I don't mean to keep getting behind on updates but so much is happening and it is taking everything to just keep getting thru it all, so getting on here to update sometimes just feels like to much.
Eli is not "doing as expected or understood". This seems to be pretty damn typical. We met with the dermatologist last week. He is covered in multiple types of rashes, lesions, cysts, and skin breakdowns from head to toe. It's on his scalp, eyes, nose, in his ears, over his face, down his chest, shoulders and back, his diaper area, palms of his hands, his legs and feet, basically everywhere. He has been followed by a derm for months because of all of his skin conditions but this is way past what we have ever seen and non of the meds were working anymore. The derm is stumped. He swapped out all of Eli's derm meds and added 4 new ones. He is wondering if it is a reaction to all of eli's medications (which at this point are around 25 different meds). He did scrapings and sent them in for cultures. He is going to work with Eli's doctor to figure out what is happening and what we can safely do about it.
Then last week we meet with Eli's PT and the bracing dept at CMH. We are changing Eli's AFO's again. He has outgrown his old AFO's and he is still not able to use the SMO's. They simply don't give him enough support. We were really hoping to be able to step down to the lower bracing but it's not happening. We are changing up his AFO's a bit to give him a bit of a spring and some extra movement. If he doesn't do well with that we will have to go back to a full AFO.
Then we met with Eli's eye doctor. It was again not good news, although we were expecting that. We had noticed changes at home. Eli was cutting corners, running into the edges of walls and furniture, refusing to look at things close up, and back to looking over his glasses again. His script has again changed, and because of this newest change his right eye has again stopped working entirely. He ordered new lenses and wants to get Eli re-used to them and then we will most likely have to go back to patching again. The lens for the right side is now so thick it doesn't fit all the way in the frame of his glasses anymore. He is going to continue following Eli closely and we have also chosen to get a 2nd opinion to make sure there isn't something we need to be doing differently. The vision specialist came out to our home and is working with us on activities to teach Eli tracking and to make uneven surfaces safer for him. We have run red tape over the floors at all of the steps and such to see if that helps him notice them.
Eli's feeding tube broke AGAIN. For the 5th time this year (each tube should last 3+ months). The silicone was literally eaten away and corroded. We went in and it was worse than realized. Again the balloon was full of bile and stomach contents and the tube was corroded. They have never seen this happen. They have sent his tube into the company for testing. Nobody knows if it is because of all of the medication we are putting thru the tube, or because of the bad placement in his stomach causing alot of extra acids, or both. This brought everyone around full circle to a conversation about his stoma placement. Eli got it when he was 2 months old and SOOOO tiny. It is now at the very bottom of his stomach right outside his intestines. This causes some issues, especially with venting and draining. His GI looked thru his past scans and xrays and they have decided that Eli needs to have a consult with the leading GI surgeon in our area. We will be meeting with him on the 5th of June. I'm terrified to even consider doing that surgery all over again. It was Eli's toughest surgery by far, to date. During the same conversation his GI doc has decided to again make changes to his miralax and also run a ton of tests. Eli is still having constant diarrhea and he is concerned about bleeding and ulcers in the small intestines, or possibly a bacteria or parasite.
Eli has also been struggling again with temp control issues and has ranged all the way up to 103, and is hanging out around 100. He has had some episodes of elevated respirations (up to 49) as well as some high heartrates. We are really having to stay on top of his fluids to try and keep him well hydrated so that doesn't all get out of control.
Lastly Eli met with his audiologist. He was fitted for new hearing aid molds and his aides were again adjusted. He is still struggling with the high tones and is still not hearing them, even with his aides on. He showed well in low tones with the aids so that is encouraging.
We have alot coming up in the next few weeks with Eli. He meets with the cardiologist this next week, his braces will be in soon, we will be meeting with the urologist, his complex doc, his GI doc, surgeon, and geneticist. We will hopefully be getting all of his test results back in as well. He is currently scheduled for surgery on the 19th of June, and we will see what the GI surgeon wants to do on his end as well.
The oldest 4 are busy winding down school. Emily, Jace, and Ben finish up on Monday and Ari finishes up on Tuesday. I will get full updates on them up next week after we get finally grades and reports and awards and such in!
Bob and I are here. Like I said the goal is just to get thru each day. It's a constant balancing act, refiguring Eli's needs minute by minute. I'm exhausted and feeling on the brink of tears or screaming often. I feel like there is always a slight knot in my chest, always wondering what next. We have ended up shutting so many people in the community temporarily out, because I feel like I have nothing to give. so many days I'm at a loss for encouraging words, because I'm right there in the trenches just like they are. Experiencing our own pain and agony, and attempting to make our way thru our own journey. I feel so selfish for not being there for everyone right now, but PLEASE know that you guys are in all our thoughts and we are sending hugs and thoughts and reading updates as often as possible.
More soon. Promise.
Friday, May 18, 2012
Tuesday, May 8, 2012
Slower Week
Last week was a bit slower of a week, which I'm totally ok with!
Emily, Jace & Ben are on their end stretch of school. They have 9 1/2 days left. They have finished up with choir, strings, book clubs, and even homework ends this week. They have alot of field trips, spirit assemblies, concerts, field day, and picnics with their new school and classmates. All the big end of the year activities multiplied as their school closes this year and they get to know their new school and new classmates. They are excited and all wound up!
Ariana has 10 1/2 days of school left. She has already been to her kindergarten roundup and has already been able to see her new school as well. She's sad to see school ending and will miss her classmates so very much!
Elias is the one with the big news! He's walking! On his own, without his walker! 29 months later he's doing it! We are beyond excited! He's still falling alot, and needs alot of help standing up and getting stable but he's doing it! He will be getting fitted thursday for a new pair of AFO's now that he's up and walking. He meets with his eye doctor today to discuss some of the concerns and changes with his eye sight. He has the dermatologist and AFO fittings on Thursday and has his audiologist on Friday. Makes for a busy few days. He goes to his cardiologist next week and we will be meeting with his complex doc here soon. We will also be talking with his geneticist and his GI doc about the continued stooling issues, as well as the hydration issues. Fun busy times.
Bob and I are same as always. Keeping up with the kids, the house, feeding everyone, and all those other fun things! We have found a once a month cooking vegetarian menu and are going to be trying some recipes out this month. Hopefully that will relieve some of the daily work of not having to cook quite so much each day! We are hoping it's successful!
I will get pics and videos up soon!
Emily, Jace & Ben are on their end stretch of school. They have 9 1/2 days left. They have finished up with choir, strings, book clubs, and even homework ends this week. They have alot of field trips, spirit assemblies, concerts, field day, and picnics with their new school and classmates. All the big end of the year activities multiplied as their school closes this year and they get to know their new school and new classmates. They are excited and all wound up!
Ariana has 10 1/2 days of school left. She has already been to her kindergarten roundup and has already been able to see her new school as well. She's sad to see school ending and will miss her classmates so very much!
Elias is the one with the big news! He's walking! On his own, without his walker! 29 months later he's doing it! We are beyond excited! He's still falling alot, and needs alot of help standing up and getting stable but he's doing it! He will be getting fitted thursday for a new pair of AFO's now that he's up and walking. He meets with his eye doctor today to discuss some of the concerns and changes with his eye sight. He has the dermatologist and AFO fittings on Thursday and has his audiologist on Friday. Makes for a busy few days. He goes to his cardiologist next week and we will be meeting with his complex doc here soon. We will also be talking with his geneticist and his GI doc about the continued stooling issues, as well as the hydration issues. Fun busy times.
Bob and I are same as always. Keeping up with the kids, the house, feeding everyone, and all those other fun things! We have found a once a month cooking vegetarian menu and are going to be trying some recipes out this month. Hopefully that will relieve some of the daily work of not having to cook quite so much each day! We are hoping it's successful!
I will get pics and videos up soon!
Saturday, April 28, 2012
Heck of an ending to the week
The week was decently slow. We had all the typical school stuff and all of that. There were field trips and class assignments and spelling tests and reading homework, and all of those fun things. We stayed busy.
Bob and I stayed busy as well. We are now at 77.2 logged miles in 33 days! I also started running some this week. I'm still at small runs rotating with walking but I'm doing it! I'm so excited about working towards my running goals.
The week ended with a BANG though. Friday afternoon we had storms rolling in. Jace was upset because he wasn't able to go outside and played. So he laid belly down on the entry floor between the front door and the stairs. I took the huge laundry hamper upstairs to hang clothes. It caught a picture hanging on the wall at the top of the stairs, knocking the metal picture frame down. It hit Jace in the back of the head at the bottom of the stairs. It scratched his head and we were able to easily get the bleeding to stop. He was doing well, eyes equal and reactive. He stood up and next thing we knew he passed out hitting his head on the entry table, and had a seizure on the ground. His eyes were full dilated and he was completely unresponsive and choking. We of course called 911 and within minutes we had police, fire, and EMS. Jace was transported by ambulance to the downtown Children's hospital. He was very dizzy and very nauseous. He was given meds to help with the throwing up, and he had a CT as well. There was no bleeding in the brain. He was sent home with a severe concussion. He slept 13 hrs last night. This morning he was still pretty out of it, but as the day has gone on he's done better. He definitely gave us quite the scare. All of the pictures have now been removed from the wall over the stairs, and we will never do that again. I never imagined something like that could happen.
Eli has done decent this week. He's had some struggles with body temp and has had to be watched fairly closely and kept inside alot. He's now signing 21 signs and has even put 2 signs together! We are so proud of how much he's accomplishing!
The kids have 15 school days left! I can't believe another year is wrapping up! Next year will be the only year ever that our oldest 4 will all be at the same school! We'll have a kindergartner, a 2nd grader, a 4th grader, and a 6th grader! WOW.
More updates soon.
Bob and I stayed busy as well. We are now at 77.2 logged miles in 33 days! I also started running some this week. I'm still at small runs rotating with walking but I'm doing it! I'm so excited about working towards my running goals.
The week ended with a BANG though. Friday afternoon we had storms rolling in. Jace was upset because he wasn't able to go outside and played. So he laid belly down on the entry floor between the front door and the stairs. I took the huge laundry hamper upstairs to hang clothes. It caught a picture hanging on the wall at the top of the stairs, knocking the metal picture frame down. It hit Jace in the back of the head at the bottom of the stairs. It scratched his head and we were able to easily get the bleeding to stop. He was doing well, eyes equal and reactive. He stood up and next thing we knew he passed out hitting his head on the entry table, and had a seizure on the ground. His eyes were full dilated and he was completely unresponsive and choking. We of course called 911 and within minutes we had police, fire, and EMS. Jace was transported by ambulance to the downtown Children's hospital. He was very dizzy and very nauseous. He was given meds to help with the throwing up, and he had a CT as well. There was no bleeding in the brain. He was sent home with a severe concussion. He slept 13 hrs last night. This morning he was still pretty out of it, but as the day has gone on he's done better. He definitely gave us quite the scare. All of the pictures have now been removed from the wall over the stairs, and we will never do that again. I never imagined something like that could happen.
Eli has done decent this week. He's had some struggles with body temp and has had to be watched fairly closely and kept inside alot. He's now signing 21 signs and has even put 2 signs together! We are so proud of how much he's accomplishing!
The kids have 15 school days left! I can't believe another year is wrapping up! Next year will be the only year ever that our oldest 4 will all be at the same school! We'll have a kindergartner, a 2nd grader, a 4th grader, and a 6th grader! WOW.
More updates soon.
Saturday, April 21, 2012
Busy Week
It was a busy week like always.
Emily did end up going back to school and she did well with no problems. She left this past Wednesday for camp. Her whole 5th grade class went. They were gone until Friday afternoon and she had a blast! She's pretty tired now and glad it's the weekend to get caught back up on sleep.
Jace has had a pretty quiet week. Not much has gone on for him outside of normal school activities. Today he meets with his new ADHD doc and we are excited to hear what she has to say.
Benjamin had a field trip this week with his class and really enjoyed it. He also went on a field trip to the firestation with his respite worker. He got to get on the trucks, sound the horns, put on a big fireman's coat and even got to use a fire hose! He had alot of fun! He also meets with his new doc today!
Ariana has also had a pretty quiet week. She had school as always. She's made alot of friends in the neighborhood and spends alot of time outside playing with all of her new friends and working on riding her bike!
Eli has been a busy little boy. He is working harder on harder on using his walker. He can get around the main level decently. He is also working hard on his signing and is now able to sign 19 words on his own without prompting! We are so proud of him! He can now climb up on the couch and he can apparently climb out of his crib. We will now begin the process to get him a sleep safe bed approved thru insurance. He also had his EEG last week. We got the results back late last night. The neurologist on call actually called me and explained all of the results. He did not have any seizures or fragments which is a good thing. That means that atleast during the EEG the meds were doing what they are supposed to. He did however have flowing, which is when the electrical activity in the brain doesn't flow as quickly as it should. This is something that we had seen on the last EEG so wasn't a big surprise. Eli also went in yesterday for another KUB (stomach xray). He is completely cleaned out finally so we are going to end up needing to back down on his miralax dose some as he's still shedding alot of his intestinal lining.
Bob and I are busy as always. We have been working out and/or walking every day. We are at 26 days and 62.7 miles! We have also gone to the pool multiple times! Today is my birthday so we are headed out for a special birthday date night! I'm super excited to get to eat at my favorite restaurant!
More updates and pictures soon!
Emily did end up going back to school and she did well with no problems. She left this past Wednesday for camp. Her whole 5th grade class went. They were gone until Friday afternoon and she had a blast! She's pretty tired now and glad it's the weekend to get caught back up on sleep.
Jace has had a pretty quiet week. Not much has gone on for him outside of normal school activities. Today he meets with his new ADHD doc and we are excited to hear what she has to say.
Benjamin had a field trip this week with his class and really enjoyed it. He also went on a field trip to the firestation with his respite worker. He got to get on the trucks, sound the horns, put on a big fireman's coat and even got to use a fire hose! He had alot of fun! He also meets with his new doc today!
Ariana has also had a pretty quiet week. She had school as always. She's made alot of friends in the neighborhood and spends alot of time outside playing with all of her new friends and working on riding her bike!
Eli has been a busy little boy. He is working harder on harder on using his walker. He can get around the main level decently. He is also working hard on his signing and is now able to sign 19 words on his own without prompting! We are so proud of him! He can now climb up on the couch and he can apparently climb out of his crib. We will now begin the process to get him a sleep safe bed approved thru insurance. He also had his EEG last week. We got the results back late last night. The neurologist on call actually called me and explained all of the results. He did not have any seizures or fragments which is a good thing. That means that atleast during the EEG the meds were doing what they are supposed to. He did however have flowing, which is when the electrical activity in the brain doesn't flow as quickly as it should. This is something that we had seen on the last EEG so wasn't a big surprise. Eli also went in yesterday for another KUB (stomach xray). He is completely cleaned out finally so we are going to end up needing to back down on his miralax dose some as he's still shedding alot of his intestinal lining.
Bob and I are busy as always. We have been working out and/or walking every day. We are at 26 days and 62.7 miles! We have also gone to the pool multiple times! Today is my birthday so we are headed out for a special birthday date night! I'm super excited to get to eat at my favorite restaurant!
More updates and pictures soon!
Thursday, April 12, 2012
Thursday updates
Elis EEG was this morning. He did really pretty well considering he was only able to sleep for 4 hrs. He cried a lot during hook up but fell asleep quickly. unfortunately we wont get results until next week.
Emily's appt was this afternoon. The doc did a whole neuro work up and said she is able to go back to school tomorrow but not to PE or recess yet. We will see how she does.
Today bob and I got in a 3 mile walk so I was so thankful for that.
More updates soon.
Emily's appt was this afternoon. The doc did a whole neuro work up and said she is able to go back to school tomorrow but not to PE or recess yet. We will see how she does.
Today bob and I got in a 3 mile walk so I was so thankful for that.
More updates soon.
Wednesday, April 11, 2012
Quick updates
Emily is resting mostly. She has been complaining of being bored and not wanting to stay in a dark room so there has been some fighting there. She says that her head is still hurting, but her finger and leg are feeling better. She meets with her doctor tomorrow to see how she is doing and to check in.
Tomorrow is Eli's next EEG. He has to stay up until midnight tonight and then be up at 4am. We check into cmh at 7:30am. Then on Friday we meet with the audiologist and we will redo his hearing aids to give them another try.
Bob and I are doing well. We are on day 16 of working out every single day. We have logged 45.2 miles and are enjoying seeing our speeds increase.
More updates in the next few days as we get test results and such back in.
Tomorrow is Eli's next EEG. He has to stay up until midnight tonight and then be up at 4am. We check into cmh at 7:30am. Then on Friday we meet with the audiologist and we will redo his hearing aids to give them another try.
Bob and I are doing well. We are on day 16 of working out every single day. We have logged 45.2 miles and are enjoying seeing our speeds increase.
More updates in the next few days as we get test results and such back in.
Tuesday, April 10, 2012
Bike Crash
Yesterday early evening Emily and Jace were riding their bikes while we cooked dinner. Jace burst thru the garage door yelling that he needed help and that there was a problem. Apparently they had been riding in the huge drainage ditch with no helmets. Emily hit a rock and crashed, landing on her head and her left hip/leg. Jace said she passed out. He tried to get her up and she passed out again hitting her head. The third time he got her up and drug her up to the top by the street and then rode his bike home fast for help. Bob flew down there and I brought the van. She couldn't walk and didn't remember anything. She had also busted open the finger nail and top of one finger. Her and I headed straight to CMH ER. No broken bones but a badly bruised tailbone, hip and femur. She still can't walk or lay on her back or left side. She has a bad concussion though. She isn't allowed to be in light, do any physical activity, watch TV, play videos games, read books, or do ANYTHING that activates her brain to work much. She has to do this until the headaches are completely gone for a full 2 days. The doctor said to expect a week plus for recovery. She is situated sideways in the recliner sleeping and Bob has checked on her often. The doctors have her on tylenol which isn't working as well, but they don't want her taking ibuprofen because of the brain injury.
I'm so proud of Jace for how strong he was and how level headed he was during all of this. He remained really calm and did exactly what he should have!
We will be having LONG talks about helmets and where it is and isn't safe to ride bikes.
I will update more when I can!
I'm so proud of Jace for how strong he was and how level headed he was during all of this. He remained really calm and did exactly what he should have!
We will be having LONG talks about helmets and where it is and isn't safe to ride bikes.
I will update more when I can!
Sunday, April 8, 2012
Easter 2012
I don't have time at the moment for a big post BUT I wanted to get the promised pics up! :)
Last night we went out for my birthday dinner to Cheesecake Factory. There were all 10 of us and everyone did really well!
This morning we all went to church for service and the easter egg hunt. Here are some pics of the kids and the family!
Last night we went out for my birthday dinner to Cheesecake Factory. There were all 10 of us and everyone did really well!
This morning we all went to church for service and the easter egg hunt. Here are some pics of the kids and the family!
Tuesday, April 3, 2012
April Already
Wow. Like always time is flying. We've been so darned busy there has been hardly any time to get on the computer. I've been very behind with blogging, Facebook, and pinterest....and honestly I'm as happy as could be.
Emily ~ She's doing pretty good. Her grades are great, again making principals honor roll with all A's. She's staying busy with choir and violin and still really enjoying both. She's been working hard on making some friends and has enjoyed playing outside and riding her bike lately, or walking Tebow. She's been reading alot as well and seems to be rekindling her love of books. We are hoping that she continues this much better mood and finishes out the year strong.
Jace ~ He's ok. His meds had an issue on refill and we definitely saw a huge shift in his behavior and moods. Hoping it all levels quickly. He's doing decent with school. He's working hard on his handwriting and slowing down a bit on his work so it's readable and correct. He is finishing up all of his state assessment as well. this was his first year to do them out loud with his speech therapist and it really seems to have helped. We are looking forward to getting the results. He got a brand new trickster stunt bike and has spent every waking moment outside with the neighborhood kids riding his bike. He loves it! He's already getting his dark tan and stronger freckles that will last all summer.
Benjamin ~ Ben is really changing lately. He's had alot of changes at school and they seem to be helping. They are having him do alot of sensory activities, including heavy work. He's sitting on a special cushion, pushes the teacher around in her chair, walks thru the hallway, carries a heavy tote full of books, does jumping jacks, wraps up in a pillow, and they are looking into him using a weighted vest or a lap pad. His teacher said they really seem to help and she's even been able to use some as a reward if he gets his work done. At home he's done really well with Brian, his respite worker. They get homework done and then head outdoors. Ben is loving riding his bike and enjoys going all over the neighborhood. They also explore the "secret" walking paths and the creek that runs thru our neighborhood. Ben also had 2 separate play dates this past weekend with 2 friends from his class. Academically he is still doing really well.
Ariana ~ She's doing well academically and socially. Still alot of speech concerns and OT issues that we are working with the school to address. She will get these services thru the school and potentially some extras from CMH, our local children's hospital. Like always she loves school and has been making lots of friends. She can now write her entire name as well as sign it without any prompting! She got her first big girl bike a few weeks ago and is loving riding up and down our street. She's hasn't tried her first walk yet, but she's not far. She spends alot of time in the backyard playing with Tebow. Her meds seem to be working well, and that really helps as she isn't having to run to the bathroom 20 times a day any more. She meets back with her kidney doctor next month.
Elias ~ He's my little man. He was doing really well. After he was diagnosed with a severe adrenal insufficiency and started on all of his new meds it seemed like things had leveled well. Next thing we knew though his sugars were dumping again and we were back to doing rescue boluses. Then he became horribly constipated (2 movements in 2 1/2 wks). He went into his new GI and they did xrays. He was completely backed up. The GI is concerned that between his gastric motility and the Mito that this is something we really need to get a handle on. He has cancelled all surgeries and procedures until this is better under control. He did a 3 day clean out, which of course resulted in some dehydration and sugar issues. Now we are on 1/2 doses of miralax 2 times a day, plus dulcolax suppositories every 2 days if no movement. He also spoke with Eli's geneticist and they discussed their concerns with Eli's sugars. Apparently with the Mito and adrenal issues Eli's sugars will forever be on this roller coaster. The geneticist says ultimately there is nothing we can do, but try and support him as best as we can. Everyone is in agreement that there is no fixing it and our only goal is to try and stay in the stable point and keep Eli safe. Like always not what we want to hear. Eli ended up getting an eye infection, followed by his body's lovely response of a rash all over his arms and shoulders. Now 3 days later he has bruises popping up all over his extremities. His doctor and I have spent alot of time emailing and sending pics and orders back and forth. We are hoping soon to get back to a stable point as we LOVE the Eli we get during those times. He is becoming so animated and lively and we cherish those times. He is working harder and harder to master his walker and can get around pretty well with it. He's signing 15 words now, and can understand even more. He's finally starting to do a crude pincher grasp and is so proud of himself when he plays peek-a-boo on his own! He's learned how to go out the doggy door and loves "sneaking out" and playing on the back deck. He can crawl up the stairs all by himself and is working hard on getting back down them. So many advancements during our stable times!
The kids are at the end of the school year. Ariana has kindergarten rounded later this week, and all of the kids are going to open house at their new school next year. Next year will be our only year to have all 4 of our kids in the same school, as it's Emily's last year (6th grade) at the elementary school. We will miss their school this year as it's in our neighborhood, only 2 blocks from our house. Luckily their new school isn't far, but not walking distance anymore. Our kids are a bit sad, but glad that their classmates are all going with them, as well as most of the teachers. The schools have had alot of joint activities for the kids to all get to know each other, and a few more are coming up as well before the big merger. We are curious to see who ends up buying the school here that is closing. Our guess is a church.
Bob and I are doing well. We've been busy as could be with the kids, and the house. I've been working on some pinterest projects, I've read some books, gotten thru multiple knitting and sewing projects, gone to a fundraiser, been out with friends, been on numerous dates nights just the 2 of us, and a double date with some friends of ours, walks once maybe twice a day, some workouts, and even a 6 day vacation to Wichita over spring break. We also headed to the zoo, a movie (The Lorax), and the Money Museum at the KC Federal Reserve. We have been enjoying this mild weather outdoors where we can spend time as a family, all 7 of us! In my free time I've also maintained all of Eli's medical files, organized all the kids papers from this school year, organized all of our household info and papers, done Ben's newest paperwork for his MR/DD waiver, met Eli's new case manager for the TA waiver, hired a 2nd nursing agency, interviewed for/hired/trained a new nurse, interviewed/hired/trained Ben's respite worker, been to 2 IEP meetings, 3 parent/teacher conferences, and who knows how many other things. It's been busy but good and satisfying.
This coming weekend my parents are coming up for spring break and we will celebrate my birthday (April 21st) early with them. We are going to go out as a family for dinner on Saturday evening, although I haven't picked where yet. The kids are excited for church Sunday and the big Easter egg hunt between services with all of their friends. We have officially decided to join our church (Unitarian Universalist Church) that we've been visiting for the last few months, and the kids are super excited about that as they love it there!
Other than that it's just same old same old. I promise to try to get on more often and update. My goal is to get back to 3 times a week. No matter if I have time or not to get on here know that I'm always open to emails, texts, calls, or skype! My goal this weekend is to get some good pics of the kiddos so I will get those posted by Monday!
Emily ~ She's doing pretty good. Her grades are great, again making principals honor roll with all A's. She's staying busy with choir and violin and still really enjoying both. She's been working hard on making some friends and has enjoyed playing outside and riding her bike lately, or walking Tebow. She's been reading alot as well and seems to be rekindling her love of books. We are hoping that she continues this much better mood and finishes out the year strong.
Jace ~ He's ok. His meds had an issue on refill and we definitely saw a huge shift in his behavior and moods. Hoping it all levels quickly. He's doing decent with school. He's working hard on his handwriting and slowing down a bit on his work so it's readable and correct. He is finishing up all of his state assessment as well. this was his first year to do them out loud with his speech therapist and it really seems to have helped. We are looking forward to getting the results. He got a brand new trickster stunt bike and has spent every waking moment outside with the neighborhood kids riding his bike. He loves it! He's already getting his dark tan and stronger freckles that will last all summer.
Benjamin ~ Ben is really changing lately. He's had alot of changes at school and they seem to be helping. They are having him do alot of sensory activities, including heavy work. He's sitting on a special cushion, pushes the teacher around in her chair, walks thru the hallway, carries a heavy tote full of books, does jumping jacks, wraps up in a pillow, and they are looking into him using a weighted vest or a lap pad. His teacher said they really seem to help and she's even been able to use some as a reward if he gets his work done. At home he's done really well with Brian, his respite worker. They get homework done and then head outdoors. Ben is loving riding his bike and enjoys going all over the neighborhood. They also explore the "secret" walking paths and the creek that runs thru our neighborhood. Ben also had 2 separate play dates this past weekend with 2 friends from his class. Academically he is still doing really well.
Ariana ~ She's doing well academically and socially. Still alot of speech concerns and OT issues that we are working with the school to address. She will get these services thru the school and potentially some extras from CMH, our local children's hospital. Like always she loves school and has been making lots of friends. She can now write her entire name as well as sign it without any prompting! She got her first big girl bike a few weeks ago and is loving riding up and down our street. She's hasn't tried her first walk yet, but she's not far. She spends alot of time in the backyard playing with Tebow. Her meds seem to be working well, and that really helps as she isn't having to run to the bathroom 20 times a day any more. She meets back with her kidney doctor next month.
Elias ~ He's my little man. He was doing really well. After he was diagnosed with a severe adrenal insufficiency and started on all of his new meds it seemed like things had leveled well. Next thing we knew though his sugars were dumping again and we were back to doing rescue boluses. Then he became horribly constipated (2 movements in 2 1/2 wks). He went into his new GI and they did xrays. He was completely backed up. The GI is concerned that between his gastric motility and the Mito that this is something we really need to get a handle on. He has cancelled all surgeries and procedures until this is better under control. He did a 3 day clean out, which of course resulted in some dehydration and sugar issues. Now we are on 1/2 doses of miralax 2 times a day, plus dulcolax suppositories every 2 days if no movement. He also spoke with Eli's geneticist and they discussed their concerns with Eli's sugars. Apparently with the Mito and adrenal issues Eli's sugars will forever be on this roller coaster. The geneticist says ultimately there is nothing we can do, but try and support him as best as we can. Everyone is in agreement that there is no fixing it and our only goal is to try and stay in the stable point and keep Eli safe. Like always not what we want to hear. Eli ended up getting an eye infection, followed by his body's lovely response of a rash all over his arms and shoulders. Now 3 days later he has bruises popping up all over his extremities. His doctor and I have spent alot of time emailing and sending pics and orders back and forth. We are hoping soon to get back to a stable point as we LOVE the Eli we get during those times. He is becoming so animated and lively and we cherish those times. He is working harder and harder to master his walker and can get around pretty well with it. He's signing 15 words now, and can understand even more. He's finally starting to do a crude pincher grasp and is so proud of himself when he plays peek-a-boo on his own! He's learned how to go out the doggy door and loves "sneaking out" and playing on the back deck. He can crawl up the stairs all by himself and is working hard on getting back down them. So many advancements during our stable times!
The kids are at the end of the school year. Ariana has kindergarten rounded later this week, and all of the kids are going to open house at their new school next year. Next year will be our only year to have all 4 of our kids in the same school, as it's Emily's last year (6th grade) at the elementary school. We will miss their school this year as it's in our neighborhood, only 2 blocks from our house. Luckily their new school isn't far, but not walking distance anymore. Our kids are a bit sad, but glad that their classmates are all going with them, as well as most of the teachers. The schools have had alot of joint activities for the kids to all get to know each other, and a few more are coming up as well before the big merger. We are curious to see who ends up buying the school here that is closing. Our guess is a church.
Bob and I are doing well. We've been busy as could be with the kids, and the house. I've been working on some pinterest projects, I've read some books, gotten thru multiple knitting and sewing projects, gone to a fundraiser, been out with friends, been on numerous dates nights just the 2 of us, and a double date with some friends of ours, walks once maybe twice a day, some workouts, and even a 6 day vacation to Wichita over spring break. We also headed to the zoo, a movie (The Lorax), and the Money Museum at the KC Federal Reserve. We have been enjoying this mild weather outdoors where we can spend time as a family, all 7 of us! In my free time I've also maintained all of Eli's medical files, organized all the kids papers from this school year, organized all of our household info and papers, done Ben's newest paperwork for his MR/DD waiver, met Eli's new case manager for the TA waiver, hired a 2nd nursing agency, interviewed for/hired/trained a new nurse, interviewed/hired/trained Ben's respite worker, been to 2 IEP meetings, 3 parent/teacher conferences, and who knows how many other things. It's been busy but good and satisfying.
This coming weekend my parents are coming up for spring break and we will celebrate my birthday (April 21st) early with them. We are going to go out as a family for dinner on Saturday evening, although I haven't picked where yet. The kids are excited for church Sunday and the big Easter egg hunt between services with all of their friends. We have officially decided to join our church (Unitarian Universalist Church) that we've been visiting for the last few months, and the kids are super excited about that as they love it there!
Other than that it's just same old same old. I promise to try to get on more often and update. My goal is to get back to 3 times a week. No matter if I have time or not to get on here know that I'm always open to emails, texts, calls, or skype! My goal this weekend is to get some good pics of the kiddos so I will get those posted by Monday!
Wednesday, March 7, 2012
Heaven and Hell
It's been a busy few days. Eli's cold has been in a holding pattern. He's not getting considerably worse but isn't really getting better either. I'm so thankful for cough assist and suction! He has had therapy for the last few days and has done really well with it. He's learned another new sign and today it looked like he may have combined 2 signs together! That's huge for him.
The older 4 have 1 more day of school and then they are on spring break for the next 10 days. We will be leaving for Wichita tomorrow and we will be there until Monday. I'm looking forward to a few days away and hopefully a bit of time to unwind.
I'm exhausted. I'm having headaches on a daily basis. We are always behind on everything. Like always we are constantly waiting for the next big hurdle.
Currently there are multiple little ones in our community who are really struggling. 1 little one is on hospice and very deeply struggling, another is in the hospital and they are unsure if he will make it thru this hurdle, and a 3rd little one is incredibly sick and was rushed to the hospital. My heart goes out to these families, so much so it makes me hurt so deeply. I read their updates and cry and ache. I wish that there was more that I could do for them, something that I could say to them, but there isn't. I know that nothing will take away their pain and nothing will make it all better.
That's the problem with Mito. Nothing will make it all better.
At church on Sunday we watched a video and discussed some of the things. I took notes of some of the things that "spoke" to me, and for some reason I feel like I need to share some of them.
"This world matters. Religion is not about transportation to another world" This struck me as huge. It's been something I've thought about, using other words, but this so immensely summed it up for me. This world does matter, and the more we go thru our journey the more I realize how VERY much this world matters. The here and now.
"Heaven and hell is inside of us, here and now." WOW. I've felt this so many times. I feel like so many days have been a real life hell for us. The things I witness in my life. The things that we go thru and that so many families go thru. These little ones are going thru HELL. The counterpart to that is there are times I glimpse my heaven. In Benjamin's smile, in Jace's beautiful eyes, in Emily singing, in Ariana's little twinkle in her eyes, in the way my little man cuddles up against me with his head tucked into my neck. I feel it sometimes in the quietest moments, in the song that plays at just the right moment.
I crave those glimpses, but sometimes I think I'm so busy living in my own personal hell that I may miss some of them. I realize this may be, but I'm so deep in my thoughts and feelings and fears that I'm unsure how to move past it all. I never used to be afraid of things, of life, I used to feel as though I had hope and excitement for life and such.
It never ceases to amaze me the things that Mito has given me and my family and the things that it has taken from us, continues to take from us, and will ultimately take from us.
My heart goes out to these families right now who are struggling. I hope they can feel the love from all of us surrounding them and their families in these beyond difficult times, in this hell.
The older 4 have 1 more day of school and then they are on spring break for the next 10 days. We will be leaving for Wichita tomorrow and we will be there until Monday. I'm looking forward to a few days away and hopefully a bit of time to unwind.
I'm exhausted. I'm having headaches on a daily basis. We are always behind on everything. Like always we are constantly waiting for the next big hurdle.
Currently there are multiple little ones in our community who are really struggling. 1 little one is on hospice and very deeply struggling, another is in the hospital and they are unsure if he will make it thru this hurdle, and a 3rd little one is incredibly sick and was rushed to the hospital. My heart goes out to these families, so much so it makes me hurt so deeply. I read their updates and cry and ache. I wish that there was more that I could do for them, something that I could say to them, but there isn't. I know that nothing will take away their pain and nothing will make it all better.
That's the problem with Mito. Nothing will make it all better.
At church on Sunday we watched a video and discussed some of the things. I took notes of some of the things that "spoke" to me, and for some reason I feel like I need to share some of them.
"This world matters. Religion is not about transportation to another world" This struck me as huge. It's been something I've thought about, using other words, but this so immensely summed it up for me. This world does matter, and the more we go thru our journey the more I realize how VERY much this world matters. The here and now.
"Heaven and hell is inside of us, here and now." WOW. I've felt this so many times. I feel like so many days have been a real life hell for us. The things I witness in my life. The things that we go thru and that so many families go thru. These little ones are going thru HELL. The counterpart to that is there are times I glimpse my heaven. In Benjamin's smile, in Jace's beautiful eyes, in Emily singing, in Ariana's little twinkle in her eyes, in the way my little man cuddles up against me with his head tucked into my neck. I feel it sometimes in the quietest moments, in the song that plays at just the right moment.
I crave those glimpses, but sometimes I think I'm so busy living in my own personal hell that I may miss some of them. I realize this may be, but I'm so deep in my thoughts and feelings and fears that I'm unsure how to move past it all. I never used to be afraid of things, of life, I used to feel as though I had hope and excitement for life and such.
It never ceases to amaze me the things that Mito has given me and my family and the things that it has taken from us, continues to take from us, and will ultimately take from us.
My heart goes out to these families right now who are struggling. I hope they can feel the love from all of us surrounding them and their families in these beyond difficult times, in this hell.
Monday, March 5, 2012
Check in
Eli - we have finally gotten to the guessed bottom of what's going on with Eli's blood sugars. The geneticist ordered a pancreatic ultrasound and a bunch of lab work. We had all of this testing last week. We got a call the next day with the lab info. Hs cortisol levels were almost non existent at a morning draw. That's not good, they have diagnosed Eli with a major adrenal insufficiency. They started him on hydrocortisone and his sugars have actually been pretty decent so far. They haven't been good enough to stop the cornstarch but good enough to avoid a central line and Tpn. So we are super happy with that. Eli was scheduled to have surgery tomorrow but in true Eli fashion he got sick. As of right now it appears to simply be a cold but we will see how it goes in the next few days. Docs and anesthesia have said if it stays as a cold he can have surgery in 2 weeks, pneumonia 6 wks, and collapsed lungs 8 weeks. So we will see how it goes. Other than that he has been pretty decent. he has been able to play outside some and go on a few walks, 2 things he really loves. We met with his nutritionist today to discuss some formula changes that will be coming up. We all seem to be on the same page so we will see what his new GI doc says on the 22nd. We also have Afo and smo refits this month, muscle and nerve clinic, neurology, and his next audiology appt. a fairly busy next few weeks.
Ariana - we will be meeting with her school in the next week or two to work on getting an Iep set up for speech therapy. Shes loving school like always. At home she's been enjoying riding her tricycle and is begging for her first big girl bike. We promised her one by summer and she's super excited about that.
Benjamin - he's spending most of his life in trouble lately. It's constant at school and very frequent at home. His teacher ended up calling in the autism specialist with the district and they are trying to work out some plans to help better manage behaviors in the classroom. We met with his behavioral psychologist today and she has a few ideas but not a lot of new Ideas that haven't already been tried. A few of them will require more on the schools part than they are probably willing to do. We meet with the school later this week to hopefully get a new plan set to help. Ben's new respite worker comes 5 afternoons a week and he is working to get used to ben and find ways to deal with homework and bens behaviors. Ben has officially learned to ride his bike and is loving being outside and practicing.
Jace - he's doing good. He just finished up his first runs of the new standardized testing accommodations and we are looking forward to finding out how he did with the new helps in place. He's doing pretty good in school and seems to be actually enjoying some of the class work and the things they are learning. If he's home he is mostly outside, meeting more of the neighbor kids and playing. He is my little outdoorsman.
Emily - wow. I'm not even sure what to say. Is been a loooooong week or two. Academically she's doing pretty good. There have been some issues but not because she's struggling, it's because she's not focused and not turning in her work on time. She is also struggling socially, and has done some things in the last week or two to make that issue even worse. We are unsure of how to handle everything that is happening. We will be meeting with Emily and her teacher so we can all come up with an idea of how to salvage this situation. She had a violin concert and choir concert this last week and did well with both of them. She is also spending lot of time outdoors and loving it.
Bob and I are exhausted. It's been a whole lot of stress and we like always are struggling to keep up. A lot of information has come at us and it's been hard for us to process it all and come up with the best plan of how to deal with it all. Bob slammed his finger in the car door and finally ended up at the er to have it drained. It's finally healing. We have been going to a new church for the last 6 weeks and we are really enjoying. It's a Unitarian universalist church and we feel very comfortable and welcomed there. The kids are loving it and so are we, so it's perfect.
I will get some pics up in the next few days. It looks like we will be going to Wichita at the end of this week for a few days. We need to get away from here for a few. A much needed break. Hopefully that will give me time to get caught up on pics.
Ariana - we will be meeting with her school in the next week or two to work on getting an Iep set up for speech therapy. Shes loving school like always. At home she's been enjoying riding her tricycle and is begging for her first big girl bike. We promised her one by summer and she's super excited about that.
Benjamin - he's spending most of his life in trouble lately. It's constant at school and very frequent at home. His teacher ended up calling in the autism specialist with the district and they are trying to work out some plans to help better manage behaviors in the classroom. We met with his behavioral psychologist today and she has a few ideas but not a lot of new Ideas that haven't already been tried. A few of them will require more on the schools part than they are probably willing to do. We meet with the school later this week to hopefully get a new plan set to help. Ben's new respite worker comes 5 afternoons a week and he is working to get used to ben and find ways to deal with homework and bens behaviors. Ben has officially learned to ride his bike and is loving being outside and practicing.
Jace - he's doing good. He just finished up his first runs of the new standardized testing accommodations and we are looking forward to finding out how he did with the new helps in place. He's doing pretty good in school and seems to be actually enjoying some of the class work and the things they are learning. If he's home he is mostly outside, meeting more of the neighbor kids and playing. He is my little outdoorsman.
Emily - wow. I'm not even sure what to say. Is been a loooooong week or two. Academically she's doing pretty good. There have been some issues but not because she's struggling, it's because she's not focused and not turning in her work on time. She is also struggling socially, and has done some things in the last week or two to make that issue even worse. We are unsure of how to handle everything that is happening. We will be meeting with Emily and her teacher so we can all come up with an idea of how to salvage this situation. She had a violin concert and choir concert this last week and did well with both of them. She is also spending lot of time outdoors and loving it.
Bob and I are exhausted. It's been a whole lot of stress and we like always are struggling to keep up. A lot of information has come at us and it's been hard for us to process it all and come up with the best plan of how to deal with it all. Bob slammed his finger in the car door and finally ended up at the er to have it drained. It's finally healing. We have been going to a new church for the last 6 weeks and we are really enjoying. It's a Unitarian universalist church and we feel very comfortable and welcomed there. The kids are loving it and so are we, so it's perfect.
I will get some pics up in the next few days. It looks like we will be going to Wichita at the end of this week for a few days. We need to get away from here for a few. A much needed break. Hopefully that will give me time to get caught up on pics.
Tuesday, February 21, 2012
Fast Check IN
Wow. This is one of my longest gaps in updating. Things were good with Eli and horrible with Ben. My focus and energy had dramatically shifted and I simply didn't have the time or the energy to get to updating.
Ben has been a disaster. He's been struggling in school alot as well as his struggles at home. His teacher is struggling to keep him involved in the classroom and on task with his work. He has been beyond hyper and stimming or sound asleep on the floor. We can't seem to get alot of in between time. He has also been struggling alot with physical boundaries and has had to be frequently separated from multiple kids in his class. We are trying to get in touch with his doctor to figure out what needs to be changed or adjusted with his meds or his behavior plan. Ben had a new in home respite worker start yesterday and they seem to be doing well together. He joins Ben after school and helps him with his school work and reading. They play for a bit, work thru dinner, and then have some more reading time before bed. On the weekends they will go on some outings in the community.
Eli had some decent weeks. We had been able to come off of his full time O2, only using it for all naps and nights. He has learned how to walk well with his walker and is able to move thru the house with it with help. He's also doing well walking with only holding onto 1 adult hand. This is a huge improvement over where we were. He has learned another new sign, "help" and has been using it very often. On Sunday we took Eli out to church and then out to a store, and then 1 more store later in the evening. By that evening his sugars were horrible, and come bed time he was struggling with his O2. We are on his 3rd day of trying to re-coop from going out. We have a call into his Geneticist trying to figure out what we need to do differently. It's not fair to Eli to never be able to leave the house. We are hoping he can help figure out a better plan.
Today was Ariana's hearing and speech evaluation. We have had constant concerns about how hard she is for us and others to understand. Her teacher has voiced concerns about understanding her in the classroom as well. She failed the OEM on the left side, but over-all she passed all of her hearing tests. Then we moved onto speech. They agreed that she has no problems with language, vocabulary, and her understanding of what we say. However she has a moderate to severe Articulation - Phonology Disorder. Ari ranked as a 2 yr old, and she is 5 yrs old. She has recommended aggressive speech therapy for a minimum of 45 minutes a week. The speech pathologist is sending all of her paperwork to the school district and she will be put on the waiting list for speech therapy in the hospital as well. We are still waiting on her OT evaluation.
We are working our way thru training another nurse. Today is his first day and he is doing well so far. Eli's next surgery is fast approaching and I'm so not ready to do this again. We haven't even gotten his blood sugars or weight re-stabilized and we are getting ready to head into another major surgery on March 6th.
Gotta run and help get Eli to bed!
I will update more in the next few days with pics!
Ben has been a disaster. He's been struggling in school alot as well as his struggles at home. His teacher is struggling to keep him involved in the classroom and on task with his work. He has been beyond hyper and stimming or sound asleep on the floor. We can't seem to get alot of in between time. He has also been struggling alot with physical boundaries and has had to be frequently separated from multiple kids in his class. We are trying to get in touch with his doctor to figure out what needs to be changed or adjusted with his meds or his behavior plan. Ben had a new in home respite worker start yesterday and they seem to be doing well together. He joins Ben after school and helps him with his school work and reading. They play for a bit, work thru dinner, and then have some more reading time before bed. On the weekends they will go on some outings in the community.
Eli had some decent weeks. We had been able to come off of his full time O2, only using it for all naps and nights. He has learned how to walk well with his walker and is able to move thru the house with it with help. He's also doing well walking with only holding onto 1 adult hand. This is a huge improvement over where we were. He has learned another new sign, "help" and has been using it very often. On Sunday we took Eli out to church and then out to a store, and then 1 more store later in the evening. By that evening his sugars were horrible, and come bed time he was struggling with his O2. We are on his 3rd day of trying to re-coop from going out. We have a call into his Geneticist trying to figure out what we need to do differently. It's not fair to Eli to never be able to leave the house. We are hoping he can help figure out a better plan.
Today was Ariana's hearing and speech evaluation. We have had constant concerns about how hard she is for us and others to understand. Her teacher has voiced concerns about understanding her in the classroom as well. She failed the OEM on the left side, but over-all she passed all of her hearing tests. Then we moved onto speech. They agreed that she has no problems with language, vocabulary, and her understanding of what we say. However she has a moderate to severe Articulation - Phonology Disorder. Ari ranked as a 2 yr old, and she is 5 yrs old. She has recommended aggressive speech therapy for a minimum of 45 minutes a week. The speech pathologist is sending all of her paperwork to the school district and she will be put on the waiting list for speech therapy in the hospital as well. We are still waiting on her OT evaluation.
We are working our way thru training another nurse. Today is his first day and he is doing well so far. Eli's next surgery is fast approaching and I'm so not ready to do this again. We haven't even gotten his blood sugars or weight re-stabilized and we are getting ready to head into another major surgery on March 6th.
Gotta run and help get Eli to bed!
I will update more in the next few days with pics!
Monday, February 6, 2012
Quick Updates
It's been a long day.
Eli's new nutritionist called. She has been working with Eli's Geneticist/Mito doc, as well a specialized GI. They have been discussing all of Eli's blood sugar and feeding issues. They are concerned that he's impacted and are ordering a KUB. Then they are wanting to work out a plan for dealing with bowel issues. Next they are wanting to increase his fluids by another 80ml's a day because of the increased calories from the cornstarch. Right now Eli's free water is at 273ml's a day, and that's on top of his 975ml's of elecare a day. So if we add another 80 ml's that's 353ml's of water for a total of 1328 ml's a day of fluid. That's 44.26 oz a day. Mind you I would need to do the 353 ml's of free water during 4 hrs off the pump. She's taking away his 1/2 hr extra off the pump and putting it back to calories. That's the end of the line. The 4 hrs he's off the pump (2 in the morning and 2 in the evening) are required to get medication done that can't be during a feed. After his surgery they have also decided that they want to change his formula. They want him on a more complete protein formula. She wants to switch him over to peptamen jr w/fiber. Apparently this is normally only used for G tube feedings but they think by adding in the fiber it will be a good fit for Eli's J tube. This change will be made very slowly over time. We will still need to add in the extra salts, iron, vitamins, and cornstarch. We are overwhelmed with all of the changes and concerned on how his system will handle this much drastic change. Working with a J tube, and a system of sensitive as Eli's changes this large can be catastrophic. In the next few weeks they will be running alot of lab work and preparing a full detailed plan. In the mean time we will again work to increase his fluids, but we seem to be pretty close to our peak.
Eli's been pretty good. He's been busy during the day practicing alot with his walker. He's also been working alot on his signing. He's learned how to sign "help" and now uses it for everything! He's been pretty exhausted making for a decent bit of O2 sat drops during nights and naps so the O2 has been very helpful during those times.
Emily is preparing for her all district 5th grade honor choir concert at the end of the week. She's super excited! She's been going thru a little bit of a struggle, working to figure out who SHE is and what SHE thinks and feels. We are confident she will figure it all out!
Jace has been busy as always outdoors. He spends as much time as possible outside with his friends!
Benjamin has been a disaster. He stole an Ipod from one of his classmates, and then his teacher caught him with some stolen items in his desk today. He's back to swiping everything and nothing anyone is saying/doing is making any difference. He's currently grounded from all electronics and that's a rough one for him. We are hoping to get our point across!
Ariana is preparing for her 5th bday! She's having her birthday party this weekend and is planning what colored sprinkles she wants for her cupcakes. She's still loving school. She's currently dancing around the living room to pandora!
Ari had her appt with the renal clinic last week. They did some testing and asked her alot of questions. They have determined that she has an overactive bladder and that it is causing alot of her issues. They are going to try her on a medication to help lessen some of the impulses and urges that her bladder is constantly sending. They will recheck in 3 months and if no change they will begin deeper testing!
As a family we have spent the last 2 sundays checking out a new church in our area, Shawnee Mission UU church. We have LOVED it! We all have really enjoyed the services and classes and have met some really neat people. We all enjoy the openness and accepting atmosphere and are excited to go back next week!
I will update more in the next few days as we get more information and test dates and results!
Eli's new nutritionist called. She has been working with Eli's Geneticist/Mito doc, as well a specialized GI. They have been discussing all of Eli's blood sugar and feeding issues. They are concerned that he's impacted and are ordering a KUB. Then they are wanting to work out a plan for dealing with bowel issues. Next they are wanting to increase his fluids by another 80ml's a day because of the increased calories from the cornstarch. Right now Eli's free water is at 273ml's a day, and that's on top of his 975ml's of elecare a day. So if we add another 80 ml's that's 353ml's of water for a total of 1328 ml's a day of fluid. That's 44.26 oz a day. Mind you I would need to do the 353 ml's of free water during 4 hrs off the pump. She's taking away his 1/2 hr extra off the pump and putting it back to calories. That's the end of the line. The 4 hrs he's off the pump (2 in the morning and 2 in the evening) are required to get medication done that can't be during a feed. After his surgery they have also decided that they want to change his formula. They want him on a more complete protein formula. She wants to switch him over to peptamen jr w/fiber. Apparently this is normally only used for G tube feedings but they think by adding in the fiber it will be a good fit for Eli's J tube. This change will be made very slowly over time. We will still need to add in the extra salts, iron, vitamins, and cornstarch. We are overwhelmed with all of the changes and concerned on how his system will handle this much drastic change. Working with a J tube, and a system of sensitive as Eli's changes this large can be catastrophic. In the next few weeks they will be running alot of lab work and preparing a full detailed plan. In the mean time we will again work to increase his fluids, but we seem to be pretty close to our peak.
Eli's been pretty good. He's been busy during the day practicing alot with his walker. He's also been working alot on his signing. He's learned how to sign "help" and now uses it for everything! He's been pretty exhausted making for a decent bit of O2 sat drops during nights and naps so the O2 has been very helpful during those times.
Emily is preparing for her all district 5th grade honor choir concert at the end of the week. She's super excited! She's been going thru a little bit of a struggle, working to figure out who SHE is and what SHE thinks and feels. We are confident she will figure it all out!
Jace has been busy as always outdoors. He spends as much time as possible outside with his friends!
Benjamin has been a disaster. He stole an Ipod from one of his classmates, and then his teacher caught him with some stolen items in his desk today. He's back to swiping everything and nothing anyone is saying/doing is making any difference. He's currently grounded from all electronics and that's a rough one for him. We are hoping to get our point across!
Ariana is preparing for her 5th bday! She's having her birthday party this weekend and is planning what colored sprinkles she wants for her cupcakes. She's still loving school. She's currently dancing around the living room to pandora!
Ari had her appt with the renal clinic last week. They did some testing and asked her alot of questions. They have determined that she has an overactive bladder and that it is causing alot of her issues. They are going to try her on a medication to help lessen some of the impulses and urges that her bladder is constantly sending. They will recheck in 3 months and if no change they will begin deeper testing!
As a family we have spent the last 2 sundays checking out a new church in our area, Shawnee Mission UU church. We have LOVED it! We all have really enjoyed the services and classes and have met some really neat people. We all enjoy the openness and accepting atmosphere and are excited to go back next week!
I will update more in the next few days as we get more information and test dates and results!
Thursday, February 2, 2012
Quick General Update
It's been a quiet few days on the doctor front. We have kept in close contact with Eli's medically complex doc and have spoken with the geneticist's dietitian multiple times but other than that not much. The dietitian is working hard to come up with the perfect feeding and fluid schedule for Eli. That's tough to do taking into account all of the issues that are going on with him. She's not rushing into any changes or decisions so we are patiently waiting for her final recommendations. Eli is up to 2 teaspoons of cornstarch a day mixed into feeds, and today we will trial out 3 teaspoons. So far his GI system seems to be handling it a bit better and this morning was one of his highest blood sugars in quite some time. He has an issue going on with a lymph node in his groin that we are keeping a close eye on. He also seems to be currently having a flare up of his skin conditions and we are working to keep that under control.
We are laying low this month and allowing his body to rest as much as possible. As of right now he is rescheduled for surgery on March 6th. We are hoping to keep life as calm as possible for him between now and then. Also hoping to get the feeds and fluids and sugars nice and stable by that point as well.
We have just finished up training a nurse and we are currently working to train another nurse. We are going to end up having to have 3 nurses to get our weeks schedule covered. They are working to find a 3rd nurse and we will see what we think tomorrow when we possibly meet an option.
The older 4 are doing pretty good. Emily is staying busy. She's been hanging out after school with a friend next door and has really enjoyed getting to know her. She's getting prepared for her honor choir concert next week and she is also making her final selections for her song for the talent show.
Jace has been busy after school with a friend from next door who is also in his class. They spend almost every afternoon together.
Benjamin has been struggling. He's apparently been staying up half the night playing his kindle fire and nintendo and as a result of this he's incredibly grouchy and having trouble staying awake at school. He's gotten into alot of trouble in class, and ended up going to the nurses office yesterday to sleep. We keep taking his things away and then he just ends up stealing one of the other kids items. It's a challenge.
Ariana is doing good. She's getting ready for her 5th birthday! She's super excited to be turning 5 and is happily planning what special treat that she wants to take to school with her. She's also making her birthday present lists and WOW. She wants a real live pink puppy, a unicorn with wings, and the perfect dress to marry her king. :)
Other than that not much new. I will get some more updates up soon.
We are laying low this month and allowing his body to rest as much as possible. As of right now he is rescheduled for surgery on March 6th. We are hoping to keep life as calm as possible for him between now and then. Also hoping to get the feeds and fluids and sugars nice and stable by that point as well.
We have just finished up training a nurse and we are currently working to train another nurse. We are going to end up having to have 3 nurses to get our weeks schedule covered. They are working to find a 3rd nurse and we will see what we think tomorrow when we possibly meet an option.
The older 4 are doing pretty good. Emily is staying busy. She's been hanging out after school with a friend next door and has really enjoyed getting to know her. She's getting prepared for her honor choir concert next week and she is also making her final selections for her song for the talent show.
Jace has been busy after school with a friend from next door who is also in his class. They spend almost every afternoon together.
Benjamin has been struggling. He's apparently been staying up half the night playing his kindle fire and nintendo and as a result of this he's incredibly grouchy and having trouble staying awake at school. He's gotten into alot of trouble in class, and ended up going to the nurses office yesterday to sleep. We keep taking his things away and then he just ends up stealing one of the other kids items. It's a challenge.
Ariana is doing good. She's getting ready for her 5th birthday! She's super excited to be turning 5 and is happily planning what special treat that she wants to take to school with her. She's also making her birthday present lists and WOW. She wants a real live pink puppy, a unicorn with wings, and the perfect dress to marry her king. :)
Other than that not much new. I will get some more updates up soon.
Wednesday, January 25, 2012
Doc called
I know I know 2 posts in one day. Super fancy. BUT that being said this post is important and so I wanted to give it it's own post.
Eli's geneticist/Mito doc just called. We chatted for about 20 minutes. Eli's lab work showed ok on hydration and kidney function BUT his CoQ10 levels were definitely low. He wants Eli on a supplement TID (which is 3 times a day). We also discussed Eli's weight loss and frequent rounds of dehydration. We also discussed the blood sugars and the problems we are having with the cornstarch. He's having us adjust Eli's cornstarch to be continuous mixed in with his feeds. He's hoping this will help some of the GI discomfort as well as help keep his sugars a bit more stable. If this doesn't work we'll move to the emergency shot.
Lastly he discussed the possibility of getting permanent access again to allow for TPN and D10. This will be our next option. Between the sugars, lack of growth, hydration issues, and the sensitivity of his GI system we may end up with no choice. A line for Eli brings up ALOT of risks. Eli is more prone to infections because of his weakened immune system. He also has a blood clotting disorder so a line obviously puts him at a much higher risk of a clot. He would have to be on blood thinners the entire time he had the line (which it would be permanent) and he would require frequent ECHO's to keep an eye on his heart.
We are going to try the changes with cornstarch for the next few days, as well as chat with the dietitian to see if there is anything differently we can do with the feeds. His doc is afraid we are close to max on calorie concentration and feed rate for Eli's GI system but it's worth trying some basic changes.
He and I will check in here in a few days to see how it's going and determine what's next.
These aren't decisions we are taking lightly but like always we are low on choices.
Eli's geneticist/Mito doc just called. We chatted for about 20 minutes. Eli's lab work showed ok on hydration and kidney function BUT his CoQ10 levels were definitely low. He wants Eli on a supplement TID (which is 3 times a day). We also discussed Eli's weight loss and frequent rounds of dehydration. We also discussed the blood sugars and the problems we are having with the cornstarch. He's having us adjust Eli's cornstarch to be continuous mixed in with his feeds. He's hoping this will help some of the GI discomfort as well as help keep his sugars a bit more stable. If this doesn't work we'll move to the emergency shot.
Lastly he discussed the possibility of getting permanent access again to allow for TPN and D10. This will be our next option. Between the sugars, lack of growth, hydration issues, and the sensitivity of his GI system we may end up with no choice. A line for Eli brings up ALOT of risks. Eli is more prone to infections because of his weakened immune system. He also has a blood clotting disorder so a line obviously puts him at a much higher risk of a clot. He would have to be on blood thinners the entire time he had the line (which it would be permanent) and he would require frequent ECHO's to keep an eye on his heart.
We are going to try the changes with cornstarch for the next few days, as well as chat with the dietitian to see if there is anything differently we can do with the feeds. His doc is afraid we are close to max on calorie concentration and feed rate for Eli's GI system but it's worth trying some basic changes.
He and I will check in here in a few days to see how it's going and determine what's next.
These aren't decisions we are taking lightly but like always we are low on choices.
Super fast Update but mostly Pics...FINALLY :)
Eli's heart rate and resps have been running high today. He had a fever this morning and was pretty tired but by this evening the fever was gone but ended up needing back on O2 to help control his sats. Hoping for a quiet evening but holding my breath.
Here are some pics!
Here are some pics!
Tuesday, January 24, 2012
Super Quick Update
It has been a fairly slow few days.
The weekend was a bit rough, as they boys were in a mood. It makes for a hard few days.
Monday was NICE. My friend picked me up and we spent 4 or 5 hrs going to tons of thrift stores digging and searching for treasures! I found some cool things and had a great time getting out and about!
Today has been a bit off. Eli had a weird night and the day has continued that way. His heart rate has been high, and his GI system is still very thrown off. His sugars have been decent today but he's flushed and exhausted. He napped over 4 hrs and has still been tired this evening. I have a call into his Geneticist/Mito doc and hoping to get some more info from him. Eli also lost weight again, which simply doesn't make sense. I will update as soon as I hear back from the doc!
Emily found out at the end of last week that she was chosen to be in the 5th Grade All District Honors Choir! She will be performing at a concert at and all district assembly the beginning of February. She's super excited and we are all excited for her!
Not much is going on with everyone else. It's not been a very info heavy few days!
We are still working on training a nurse, although she is struggling a bit with the stairs and the floor. We still don't have other prospects on nurses. It leaves us pretty close to home right now!
In closing...Comments on my blog are all moderated. I have a few readers who seem to have nothing better to do with their time but harass me. Because of this all comments have to be approved before they are posted. If you sign your name to your comment, it has a higher chance of being published.
Lastly...If you think you can do it better, or if you disagree with how we are doing something, or if you think that we are making things up, feel free to shoot me an email or give me a call and I would be more than happy to set up a weekend for you to come stay with us and follow us around participating in EVERY aspect of our lives. We will then see how easy you believe it all to be.
We 120% appreciate all of the amazing people in our lives and all of the support that we receive from you guys! You all are amazing!
The weekend was a bit rough, as they boys were in a mood. It makes for a hard few days.
Monday was NICE. My friend picked me up and we spent 4 or 5 hrs going to tons of thrift stores digging and searching for treasures! I found some cool things and had a great time getting out and about!
Today has been a bit off. Eli had a weird night and the day has continued that way. His heart rate has been high, and his GI system is still very thrown off. His sugars have been decent today but he's flushed and exhausted. He napped over 4 hrs and has still been tired this evening. I have a call into his Geneticist/Mito doc and hoping to get some more info from him. Eli also lost weight again, which simply doesn't make sense. I will update as soon as I hear back from the doc!
Emily found out at the end of last week that she was chosen to be in the 5th Grade All District Honors Choir! She will be performing at a concert at and all district assembly the beginning of February. She's super excited and we are all excited for her!
Not much is going on with everyone else. It's not been a very info heavy few days!
We are still working on training a nurse, although she is struggling a bit with the stairs and the floor. We still don't have other prospects on nurses. It leaves us pretty close to home right now!
In closing...Comments on my blog are all moderated. I have a few readers who seem to have nothing better to do with their time but harass me. Because of this all comments have to be approved before they are posted. If you sign your name to your comment, it has a higher chance of being published.
Lastly...If you think you can do it better, or if you disagree with how we are doing something, or if you think that we are making things up, feel free to shoot me an email or give me a call and I would be more than happy to set up a weekend for you to come stay with us and follow us around participating in EVERY aspect of our lives. We will then see how easy you believe it all to be.
We 120% appreciate all of the amazing people in our lives and all of the support that we receive from you guys! You all are amazing!
Wednesday, January 18, 2012
Complicated. It's all so complicated.
It's been a rough week. We were training a brand new nurse and after 45 hrs she quit because Eli was to complicated. Then this week Eli's other nurse quit because she's moving to florida to get away from a bad relationship. So we ended up with no nurses.
Then to top it off Eli had a rough week. He started with alot of respiratory issues and needing alot of extra breathing treatments and CPT to get thru it all. Then the fevers started. Then for a day or two he almost seemed like he was getting better.
Then this morning his sugars started dumping fast and we kept doing his emergency meds and they just kept dropping. They ended up dropping over 30points in 40 minutes. We spent a whole lot of time on the phone with his doctor getting orders and constantly adjusting the care plan. Eli has been on continuous feeds and has ended up needing 6 rounds of emergency treatments and he's still barely above his lowest limit for sugars this evening. His GI system is also very upset by it all and he's having diapers multiple times an hr which is making it even harder to keep up with his sugars and hydration. His doctor has been amazing today at calling me frequently to keep up with everything going on.
This afternoon Eli had an appt with his neurologist. We discussed the grand mal seizure and Eli's neurological state in general. He believes we will see even more seizure activity with each illness and that there aren't medication options to keep that from occurring. He also discussed Eli's therapies and where he was with his growth and advancement. He informed me that he thinks with Eli's "severe neurological and cognitive delays and impairments that we will need to make a choice at some point if we continue aggressive therapy." He doesn't believe that Eli will learn these skills and he says by the age of 3 or 4 we will definitely need to be ready to stop intensive therapy and pushing. I was very offended by all of this and will be requesting a new neurologist. I don't think there is ever a point to stop providing therapy and a chance for him to learn. It's not a medication with tons of horrible side effects. It's simply therapy. I don't see what it can do to harm him, only help him.
Lastly Eli saw his optometrist. Eli's eyes have had a slight improvement with consistent use of his glasses. We discussed the irritation Eli is having with the patch so he has decided for now to hold off on using the patch and to continue with using his glasses during all the waking hrs.
Right now we are doing everything we can to try to keep Eli as stable as possible. We are working round the clock to keep his respiration and heart rate down, his O2 up, and his sugars up. He has lost 1 1/2 lbs in the last 2 weeks and is constantly bordering on dehydration. The doctors have no idea why this is all happening or what to do about it all.
In other kids news.
They all had doc appts this week.
Emily ~ She's up to 5ft 3 in. The doc ran some lab work to check on some issues she had been having and the tests all came back OK on that. They are going to watch for 2 months and check back in. They also did some lung function tests. The first go around showed some issues, but after the breathing treatment she did much better on the 2nd go around. They are changing around some of her meds and hoping to get her at a better point with her asthma. She also showed some struggles with the vision test so she meets with the optometrist on Friday. We also talked about Emily's sleep walking and they are referring her to sleep clinic for a full evaluation.
Jace ~ He's up to 4ft 6in. The doc said he's looking pretty good. She's happy where he is with all of his stomach meds and is leaving all that to be followed by Jace's GI doc. She didn't currently have any concerns with Jace!
Benjamin ~ He's up to 4ft. The doc looked him over and all looked good till she got to his ears. All she could see in his left ear canal was green. After much work it was determined that Ben had a large green eraser stuffed all the way into his ear canal. She was finally able to remove it and it doesn't appear like any permanent damage has occurred. Other than that Ben looked pretty good as well. He's still definitely under weight but has gained some so we will continue with what we are currently doing.
Ariana ~ She's up to 3ft 8in. She was the roughest appt. First we went over her hand issues and she has been referred to the OT dept. She is also being referred to the speech dept for her trouble with making certain sounds. Then we discussed Ari's urinary issues. The doctor agreed that the cluster peeing and not being able to fully empty her bladder was a concern. She ran some tests (blood and urine). It looks like Ari might have a UTI and that she also has an abnormally high PH level in her urine. The UTI doesn't explain away the other issues as they have been going on for a long time but it is obviously something that needs fixed. She is referring Ari to the renal clinic for a full work up. Ari also failed her vision test and will be seeing the optometrist on Friday with Emily.
Bob and I like always are exhausted. Earlier in the week I cried, really cried for the first time in a long time. Everything just hit me and the emotions were overwhelming. At this point I feel numb. I keep hearing doctors say there is nothing more we can do, it's the mito, etc.... Eli's medical care is at the point of simply waiting for his next crisis. There is no more trying to fix it, very minimal prevention, it's simply waiting and planning for the next crisis. Nobody worries about baseline anymore, we don't shoot for baseline. We just take slightly stable and run with it. Every morning I'm scared to find out what that day will medically bring. I can never quite relax, already ready to jump up when the next beep happens. Every time my phone rings I'm wondering which doctor it is and already getting all the information straight in my mind, knowing exactly what they want to know. I feel like I'm always planning for the next crisis. I can't really blame the doctors because we do it here at home as well. It's always right around the corner. I don't know how much longer my nerves can handle it. We just float thru the middle point planning and organizing and waiting. The waiting is the worst.
Every special time and moment has been taken from us. It's simply going thru the motions for the family. I can't remember the last time we were able to celebrate a holiday. Eli has been sick, and by sick I mean very sick and unstable for each and everyone. This last monday was Bob and I's first anniversary. It was a horrible day. Our nurse called in, Eli was very sick, and the day was a mess. All I could think about is how I felt as though every special moment had been stolen from us. It's very depressing and hard to stay positive.
Most days are simply going thru the motions of it all. Numb is where I try to remain, but that being said real emotions sneak in there sometimes no matter how hard I try to hold them off.
I apologize to all those I'm ignoring right now. I'm not purposefully doing it, well mostly not. I'm depressed and tired and exhausted and honestly grumpy. I feel horrible putting that burden on my friends. I know most all of you are going thru so many of the same things, and I'm assuming many of the same emotions. I don't want to drag my medical friends deeper down into their own struggles and battles....and for my non medical friends...I know you don't understand and that's ok. You ask how Eli is, not really wanting to know the answer. Eli scares you and I get that. Eli scares me sometimes too. I want to talk to you about non-medical stuff, I want to know about your life, I want to talk about the latest gossip, but for some reason everyone seems scared to talk about those things with me. I NEED those conversations. I need life outside of this medical vortex.
I know I'm being a horrible friend to all of you out there and I want to change it I really do, but I'm so exhausted and blah...It's just not easy. It's never easy anymore.
I guess enough rambling for today. Congrats if you made it all the way thru all of that! :)
I guess what I was trying to get at is be a pain, reach out to me, bug the heck out of me, show up at my house unannounced to chat or drag me out to a movie. Call me and complain about your boss, or you kids, or your childs doctor. Don't be afraid to reach out, it's ok.
love to all.
Then to top it off Eli had a rough week. He started with alot of respiratory issues and needing alot of extra breathing treatments and CPT to get thru it all. Then the fevers started. Then for a day or two he almost seemed like he was getting better.
Then this morning his sugars started dumping fast and we kept doing his emergency meds and they just kept dropping. They ended up dropping over 30points in 40 minutes. We spent a whole lot of time on the phone with his doctor getting orders and constantly adjusting the care plan. Eli has been on continuous feeds and has ended up needing 6 rounds of emergency treatments and he's still barely above his lowest limit for sugars this evening. His GI system is also very upset by it all and he's having diapers multiple times an hr which is making it even harder to keep up with his sugars and hydration. His doctor has been amazing today at calling me frequently to keep up with everything going on.
This afternoon Eli had an appt with his neurologist. We discussed the grand mal seizure and Eli's neurological state in general. He believes we will see even more seizure activity with each illness and that there aren't medication options to keep that from occurring. He also discussed Eli's therapies and where he was with his growth and advancement. He informed me that he thinks with Eli's "severe neurological and cognitive delays and impairments that we will need to make a choice at some point if we continue aggressive therapy." He doesn't believe that Eli will learn these skills and he says by the age of 3 or 4 we will definitely need to be ready to stop intensive therapy and pushing. I was very offended by all of this and will be requesting a new neurologist. I don't think there is ever a point to stop providing therapy and a chance for him to learn. It's not a medication with tons of horrible side effects. It's simply therapy. I don't see what it can do to harm him, only help him.
Lastly Eli saw his optometrist. Eli's eyes have had a slight improvement with consistent use of his glasses. We discussed the irritation Eli is having with the patch so he has decided for now to hold off on using the patch and to continue with using his glasses during all the waking hrs.
Right now we are doing everything we can to try to keep Eli as stable as possible. We are working round the clock to keep his respiration and heart rate down, his O2 up, and his sugars up. He has lost 1 1/2 lbs in the last 2 weeks and is constantly bordering on dehydration. The doctors have no idea why this is all happening or what to do about it all.
In other kids news.
They all had doc appts this week.
Emily ~ She's up to 5ft 3 in. The doc ran some lab work to check on some issues she had been having and the tests all came back OK on that. They are going to watch for 2 months and check back in. They also did some lung function tests. The first go around showed some issues, but after the breathing treatment she did much better on the 2nd go around. They are changing around some of her meds and hoping to get her at a better point with her asthma. She also showed some struggles with the vision test so she meets with the optometrist on Friday. We also talked about Emily's sleep walking and they are referring her to sleep clinic for a full evaluation.
Jace ~ He's up to 4ft 6in. The doc said he's looking pretty good. She's happy where he is with all of his stomach meds and is leaving all that to be followed by Jace's GI doc. She didn't currently have any concerns with Jace!
Benjamin ~ He's up to 4ft. The doc looked him over and all looked good till she got to his ears. All she could see in his left ear canal was green. After much work it was determined that Ben had a large green eraser stuffed all the way into his ear canal. She was finally able to remove it and it doesn't appear like any permanent damage has occurred. Other than that Ben looked pretty good as well. He's still definitely under weight but has gained some so we will continue with what we are currently doing.
Ariana ~ She's up to 3ft 8in. She was the roughest appt. First we went over her hand issues and she has been referred to the OT dept. She is also being referred to the speech dept for her trouble with making certain sounds. Then we discussed Ari's urinary issues. The doctor agreed that the cluster peeing and not being able to fully empty her bladder was a concern. She ran some tests (blood and urine). It looks like Ari might have a UTI and that she also has an abnormally high PH level in her urine. The UTI doesn't explain away the other issues as they have been going on for a long time but it is obviously something that needs fixed. She is referring Ari to the renal clinic for a full work up. Ari also failed her vision test and will be seeing the optometrist on Friday with Emily.
Bob and I like always are exhausted. Earlier in the week I cried, really cried for the first time in a long time. Everything just hit me and the emotions were overwhelming. At this point I feel numb. I keep hearing doctors say there is nothing more we can do, it's the mito, etc.... Eli's medical care is at the point of simply waiting for his next crisis. There is no more trying to fix it, very minimal prevention, it's simply waiting and planning for the next crisis. Nobody worries about baseline anymore, we don't shoot for baseline. We just take slightly stable and run with it. Every morning I'm scared to find out what that day will medically bring. I can never quite relax, already ready to jump up when the next beep happens. Every time my phone rings I'm wondering which doctor it is and already getting all the information straight in my mind, knowing exactly what they want to know. I feel like I'm always planning for the next crisis. I can't really blame the doctors because we do it here at home as well. It's always right around the corner. I don't know how much longer my nerves can handle it. We just float thru the middle point planning and organizing and waiting. The waiting is the worst.
Every special time and moment has been taken from us. It's simply going thru the motions for the family. I can't remember the last time we were able to celebrate a holiday. Eli has been sick, and by sick I mean very sick and unstable for each and everyone. This last monday was Bob and I's first anniversary. It was a horrible day. Our nurse called in, Eli was very sick, and the day was a mess. All I could think about is how I felt as though every special moment had been stolen from us. It's very depressing and hard to stay positive.
Most days are simply going thru the motions of it all. Numb is where I try to remain, but that being said real emotions sneak in there sometimes no matter how hard I try to hold them off.
I apologize to all those I'm ignoring right now. I'm not purposefully doing it, well mostly not. I'm depressed and tired and exhausted and honestly grumpy. I feel horrible putting that burden on my friends. I know most all of you are going thru so many of the same things, and I'm assuming many of the same emotions. I don't want to drag my medical friends deeper down into their own struggles and battles....and for my non medical friends...I know you don't understand and that's ok. You ask how Eli is, not really wanting to know the answer. Eli scares you and I get that. Eli scares me sometimes too. I want to talk to you about non-medical stuff, I want to know about your life, I want to talk about the latest gossip, but for some reason everyone seems scared to talk about those things with me. I NEED those conversations. I need life outside of this medical vortex.
I know I'm being a horrible friend to all of you out there and I want to change it I really do, but I'm so exhausted and blah...It's just not easy. It's never easy anymore.
I guess enough rambling for today. Congrats if you made it all the way thru all of that! :)
I guess what I was trying to get at is be a pain, reach out to me, bug the heck out of me, show up at my house unannounced to chat or drag me out to a movie. Call me and complain about your boss, or you kids, or your childs doctor. Don't be afraid to reach out, it's ok.
love to all.
Thursday, January 12, 2012
Geneticist / Mito Doc
We met with Eli's geneticist and Mito doc today. We spent a little over 2 hrs there.
1. Blood Sugars. He agrees that this is a huge issue that needs to be immediately gotten under control. He agrees that we need to try one more option before our final 2 options. Right now we are going to try water and cornstarch. He's hoping that it will be enough to help increase his sugars enough to protect from these big hypoglycemic drops. If this doesn't work we are left with 2 options. If this doesn't work we will discuss Glucagon injections, and if that doesn't work we will be discussing (AGAIN) permanent access to allow for Iv fluids to help keep everything up.
2. Next we discussed Eli's growth and weight. He knows that Eli is in on the technical highest dose of HGH BUT we CAN go up if we need to. Currently Eli is back on a downward spiral on his weight and his still struggling to stay hydrated. He's not sure why this is happening as he is technically getting way more than what he needs in calories, fluids, and everything else. He ran some lab tests today and is going to go over everything with a fine tooth comb and see if he can come up with a better feed/fluid schedule. Again this could end up with permanent access that could allow for some IV fluids and TPN as needed.
3. We then discussed Eli's secretions and his sleep apnea. He is concerned about the size of Eli's nasal passages...this is something that has been a concern since birth. It was always assumed that they would grow and adjust. That's not happened. We can barely get a 5Fr down one side and a 6Fr down the other. He has put in a referral for plastic surgery and ENT to see about dilating the nasal passages.
4. We discussed Eli's seizures. He's not surprised that we are seeing an increase and a change in those. He warned us that the brain is a weaker point in Mito kiddos like Eli and that Eli is very susceptible to seizures and such, especially when he's body is under any kind of stress. He is in favor of Eli's seizure care being switched over to the epileptologist instead of just the neurologist, and he really likes the one that Eli has already seen.
5. There was also some discussions on a brand new clinical lab that will be opening here in KC in the next 2 or 3 months. They are almost finished with the research labs. They are testing Mitochondria fully for mutations and deletions and such. He has had 1 patient go thru the research piece and they were able to get the last piece of the puzzle and he strongly encourages us to finish this testing with Eli as well. We will go ahead with it, although we don't know how many more diagnosis' we can handle.
6. Lastly we discussed Eli's critical care plans. I voiced my concerns over doctors giving up because of the Mito diagnosis. He discussed end of life, terminal care, and agrees that we aren't at that point and at this point it simply isn't fair to deny Eli ANY medical helps that can possibly help him medically and quality of life wise. He did forewarn that there will come a point where we will need to start questioning EVERY single intervention and picking what is truly "worth" doing, but he strongly believes that we aren't there yet. This was an awkward conversation to have. We know the in's and out's of Mito. We know the statistics. We know what can/will/could happen. These are obviously things that Bob and I have discussed quietly...privately. That being said when a doctor openly discusses these things it's scary and comforting all at the same time. He is going to put together a FULL critical care plan so there shouldn't be as much question as to what we need to do in situations where Eli is struggling.
He mentioned to me that it is hard to expect 1 doctor to know everything about a child as complex as Eli. I told him I understand that, and that Eli has 36 doctors, and I looked him right in the eyes and said..."In the same turn it is hard to expect 2 parents with NO medical training to know everything about what to do." He looked right at me, and quietly responded "We can't be putting this on you, we will get it done." I sure hope he's right. Bob and I can't continue to guess and struggle thru each and every day, it's not fair to Eli. On a slightly funny side note, his geneticist/Mito doctor informed me with a small laugh, that he can see why some are afraid of Eli's complexities, he said that honestly he is too! :)
He has decided to follow Eli every 3 months. He says he normally follows his patients yearly when they are stable, but believes that every 3 months is best for Eli. We tend to agree.
Eli had a rough day with the temps and being out and about. He couldn't handle sitting up in his wheelchair that long and got very tired and droopy. The afternoon brought a lot of napping, and this evening a lot of laying around. Tomorrow is a slow day at home, which will help him catch up a touch.
Monday brings his new cough assist and all of the training involved with that. Next week also brings a recheck with his eye doctor and his neurologist.
I will get another update up in the next few days. Maybe I can even get organized and get some pictures up too! :)
1. Blood Sugars. He agrees that this is a huge issue that needs to be immediately gotten under control. He agrees that we need to try one more option before our final 2 options. Right now we are going to try water and cornstarch. He's hoping that it will be enough to help increase his sugars enough to protect from these big hypoglycemic drops. If this doesn't work we are left with 2 options. If this doesn't work we will discuss Glucagon injections, and if that doesn't work we will be discussing (AGAIN) permanent access to allow for Iv fluids to help keep everything up.
2. Next we discussed Eli's growth and weight. He knows that Eli is in on the technical highest dose of HGH BUT we CAN go up if we need to. Currently Eli is back on a downward spiral on his weight and his still struggling to stay hydrated. He's not sure why this is happening as he is technically getting way more than what he needs in calories, fluids, and everything else. He ran some lab tests today and is going to go over everything with a fine tooth comb and see if he can come up with a better feed/fluid schedule. Again this could end up with permanent access that could allow for some IV fluids and TPN as needed.
3. We then discussed Eli's secretions and his sleep apnea. He is concerned about the size of Eli's nasal passages...this is something that has been a concern since birth. It was always assumed that they would grow and adjust. That's not happened. We can barely get a 5Fr down one side and a 6Fr down the other. He has put in a referral for plastic surgery and ENT to see about dilating the nasal passages.
4. We discussed Eli's seizures. He's not surprised that we are seeing an increase and a change in those. He warned us that the brain is a weaker point in Mito kiddos like Eli and that Eli is very susceptible to seizures and such, especially when he's body is under any kind of stress. He is in favor of Eli's seizure care being switched over to the epileptologist instead of just the neurologist, and he really likes the one that Eli has already seen.
5. There was also some discussions on a brand new clinical lab that will be opening here in KC in the next 2 or 3 months. They are almost finished with the research labs. They are testing Mitochondria fully for mutations and deletions and such. He has had 1 patient go thru the research piece and they were able to get the last piece of the puzzle and he strongly encourages us to finish this testing with Eli as well. We will go ahead with it, although we don't know how many more diagnosis' we can handle.
6. Lastly we discussed Eli's critical care plans. I voiced my concerns over doctors giving up because of the Mito diagnosis. He discussed end of life, terminal care, and agrees that we aren't at that point and at this point it simply isn't fair to deny Eli ANY medical helps that can possibly help him medically and quality of life wise. He did forewarn that there will come a point where we will need to start questioning EVERY single intervention and picking what is truly "worth" doing, but he strongly believes that we aren't there yet. This was an awkward conversation to have. We know the in's and out's of Mito. We know the statistics. We know what can/will/could happen. These are obviously things that Bob and I have discussed quietly...privately. That being said when a doctor openly discusses these things it's scary and comforting all at the same time. He is going to put together a FULL critical care plan so there shouldn't be as much question as to what we need to do in situations where Eli is struggling.
He mentioned to me that it is hard to expect 1 doctor to know everything about a child as complex as Eli. I told him I understand that, and that Eli has 36 doctors, and I looked him right in the eyes and said..."In the same turn it is hard to expect 2 parents with NO medical training to know everything about what to do." He looked right at me, and quietly responded "We can't be putting this on you, we will get it done." I sure hope he's right. Bob and I can't continue to guess and struggle thru each and every day, it's not fair to Eli. On a slightly funny side note, his geneticist/Mito doctor informed me with a small laugh, that he can see why some are afraid of Eli's complexities, he said that honestly he is too! :)
He has decided to follow Eli every 3 months. He says he normally follows his patients yearly when they are stable, but believes that every 3 months is best for Eli. We tend to agree.
Eli had a rough day with the temps and being out and about. He couldn't handle sitting up in his wheelchair that long and got very tired and droopy. The afternoon brought a lot of napping, and this evening a lot of laying around. Tomorrow is a slow day at home, which will help him catch up a touch.
Monday brings his new cough assist and all of the training involved with that. Next week also brings a recheck with his eye doctor and his neurologist.
I will get another update up in the next few days. Maybe I can even get organized and get some pictures up too! :)
Wednesday, January 11, 2012
Wow I'm behind
Holy cow I didn't realize it had been so long since I had updated. It's been just one huge blur, which seems to be the story of my life lately.
Eli has been home from the hospital for a week now. We pushed and he was able to come home because we have such a medical setup here and he has nursing. He did decent after getting home, although he struggled alot with his blood sugar.
We met with Eli's new medically complex doctor 48hrs after he was discharged. They ended up needin to change all of his feeds and his fluids. His blood sugars are dropping quickly while he's off feeds, and he is still running dehydrated. So he is now on more calories and carbs, and his water has been increased. He also is not getting as much time off the pump. He gets 2 hrs in the morning and he's done decent with maintaining his blood sugar. He also gets 2 1/2 hrs at night and he is doing horrible keeping his sugars up. He has yet to actually get that whole time off the pump. We have had to put his emergency sugars plan into effect every night. We are also still seeing many signs of being a bit "dry" and are working to combat that.
He has had some wheezing issues again as well and had to go back to his complex doc. He made a bit better management plan and has also decided that we are going to ultimately need to provide Eli more support to help him conserve energy and properly handle clearing secretions so they don't settle into his lungs. He has decided to increase Eli's rescue nebulizer treatments, as well as his CPT and he has also placed an order for Eli to have a Cough Assist machine. Hopefully if we can help Eli cough and clear everything a bit better on his own, we can provide a bit of extra protection for his lungs.
Eli is still struggling with not being on O2. We had a day or 2 where he did well, and then right back to it. We are seeing his O2 sats drop and his heartrate and resps shoot right back up the moment he takes his O2 off.
We have also learned this week that Eli's endocrinologist is no longer able to manage Eli's care when it comes to his hypoglycemia. He believes it is related to the Mito and is unsure what needs to be done to help stabilize it all. He is referring Eli back to his geneticist/Mito doctor to deal with all of it.
Eli also had another nurse quit this week. Eli was yet again to complicated. We are unsure of how to prevent this from occurring so frequently. We are 110% upfront and honest with the nurses when they interview. We go over every drop of his medical care. They are again looking for a new nurse to help cover 40hrs a week. We are changing around some of the requirements, and hoping that helps weed out some of the problems a bit earlier on in the process.
Eli meets with his geneticist tomorrow. They were able to get him a rush appt. He will meet with his eye doctor and his neurologist next week as well. We are working to get back to a new "baseline" and to figure out where we go from here.
With each illness we are learning new things about Eli, and learning of new problems. We have definitely learned that Eli's lungs are by far his weakest point, and for Eli they seem to be the hardest thing to heal. Each illness is placing a stronger and stronger hold on his lungs and we are struggling to get back to stable, let alone baseline.
We have already informed Eli's new complex doctor that in a few weeks we would like to have a very serious sit down talk and discuss where we are, where we go from here, what we start, what we stop, what we change. We feel so many times that Eli's doctors all tip-toe around alot of subjects that we all know are right there needing discussed. We are hoping that his new primary doctor will be able to openly honestly handle these types of discussions.
Where the rest of us are...
Bob and I are exhausted. Currently Eli only has 36 if his 84 hrs a week covered. This means that Bob and I are 100% in charge of his care 132 hrs a week. It's exhausting and Eli is continuing to be more and more work each day. We are constantly reassessing and making changes. It's a games of numbers and we are always re-figuring and just trying to keep up.
Emily ~ She's busy as always with school. She is involved in her 2nd book club of the year, still in choir and strings and student counsel as well. To top it all off she has decided to audition for the school talent show and is working on picking the perfect song! She's hitting the age where she is becoming boy crazed and that's always fun for Bob and I to hear all about!
Jace ~ He's doing pretty well with school. He made some advancements on his last report card as well on his IEP speech goals. Some things are still proving to be quite the challenge. Assessments are coming up and this will be the first time that his IEP accommodation will be in place. We are really hoping that will help Jace out and allow him to feel more comfortable witht he testing. He's still enjoying school and making new friends. He won an award this month with this school and we were all super excited about that!
Benjamin ~ He's doing decent in school. Like always still struggling on many things. He has moved into the class clown role as he's learned that he can make his classmates laugh and he enjoys that interaction. That combined with his constant moving and spinning and pacing has gotten him in trouble multiple times lately. He's still getting all of his IEP accommodation and is making VERY slow progress towards reaching his goals. At home he still stays super busy on his kindle fire or the nintendo or Wii.
Ariana ~ She's turning into such a stubborn little lady. She's girly as could be but beyond rough and tough. Just last week she used Emily's razor to "practice" shaving like Emily and Bob. She shaved all of the skin right off her chin. Then 2 days later she got a huge splinter in the palm of her hand. She makes it thru all of these events with virtually no tears and her hair perfectly in pig tails or braids. It's interesting to watch. She is loving school and doing well. She has learned almost all of her ABC's and now knows her numbers up to 13! She knows all of her shapes and colors!
I think that sums us all up for now. I will get on tomorrow after the geneticist and update. By that point I should hopefully have some more detailed information on where we go for here.
We are frequently asked for specific things that people can send thoughts or prayers for...
1. For Eli. He is my little fighter and I'm constantly amazed by his strength. That being said his lungs are really slowing him down. He's struggling with keeping up with what he wants to do and it's really interfering with his desire to play. He ends up needing to take frequent breaks and have others help him do some of the things he would normally on his own. He so badly wants to be a normal 2 yr old and play and his lungs are making that impossible.
2. For Eli's doctors and nurses. We are losing so many people to the complexities of our little man. We need a strong team that is as strong a fighter as our little man. We need them to be able to make good decisions that balance Eli body AND Eli's quality of life. We also need them to communicate with us openly and honestly and clearly.
3. For us. Bob and I struggle each day to just get thru it. We are lonely, so lonely. We feel isolated and honestly very depressed quite often. It is such a struggle caring for a little one like Eli. It is literally taking EVERYTHING that we have. It is also tough for the oldest 4. They understand only pieces of it, and it can be scary for them. They do such an amazing job staying strong for our little man and they shower him with so much love it's overwhelming to watch. Their connection with him is intense.
4. Lastly and VERY importantly we ask for thoughts and prayers for all of the other families out there. I know that you are here reading our journey BUT please never forget that there are families on similar journeys. There are other little warriors out there fighting thru each and every day. There are other exhausted parents out there fighting for what is best for their kiddos, fighting to make it thru each day. Please please please never forget that there is a whole community of us, a whole community fighting thru each and every day, leaning on each other, sticking together as one big unconventional family held together by this horrible disease of Mito.
Eli has been home from the hospital for a week now. We pushed and he was able to come home because we have such a medical setup here and he has nursing. He did decent after getting home, although he struggled alot with his blood sugar.
We met with Eli's new medically complex doctor 48hrs after he was discharged. They ended up needin to change all of his feeds and his fluids. His blood sugars are dropping quickly while he's off feeds, and he is still running dehydrated. So he is now on more calories and carbs, and his water has been increased. He also is not getting as much time off the pump. He gets 2 hrs in the morning and he's done decent with maintaining his blood sugar. He also gets 2 1/2 hrs at night and he is doing horrible keeping his sugars up. He has yet to actually get that whole time off the pump. We have had to put his emergency sugars plan into effect every night. We are also still seeing many signs of being a bit "dry" and are working to combat that.
He has had some wheezing issues again as well and had to go back to his complex doc. He made a bit better management plan and has also decided that we are going to ultimately need to provide Eli more support to help him conserve energy and properly handle clearing secretions so they don't settle into his lungs. He has decided to increase Eli's rescue nebulizer treatments, as well as his CPT and he has also placed an order for Eli to have a Cough Assist machine. Hopefully if we can help Eli cough and clear everything a bit better on his own, we can provide a bit of extra protection for his lungs.
Eli is still struggling with not being on O2. We had a day or 2 where he did well, and then right back to it. We are seeing his O2 sats drop and his heartrate and resps shoot right back up the moment he takes his O2 off.
We have also learned this week that Eli's endocrinologist is no longer able to manage Eli's care when it comes to his hypoglycemia. He believes it is related to the Mito and is unsure what needs to be done to help stabilize it all. He is referring Eli back to his geneticist/Mito doctor to deal with all of it.
Eli also had another nurse quit this week. Eli was yet again to complicated. We are unsure of how to prevent this from occurring so frequently. We are 110% upfront and honest with the nurses when they interview. We go over every drop of his medical care. They are again looking for a new nurse to help cover 40hrs a week. We are changing around some of the requirements, and hoping that helps weed out some of the problems a bit earlier on in the process.
Eli meets with his geneticist tomorrow. They were able to get him a rush appt. He will meet with his eye doctor and his neurologist next week as well. We are working to get back to a new "baseline" and to figure out where we go from here.
With each illness we are learning new things about Eli, and learning of new problems. We have definitely learned that Eli's lungs are by far his weakest point, and for Eli they seem to be the hardest thing to heal. Each illness is placing a stronger and stronger hold on his lungs and we are struggling to get back to stable, let alone baseline.
We have already informed Eli's new complex doctor that in a few weeks we would like to have a very serious sit down talk and discuss where we are, where we go from here, what we start, what we stop, what we change. We feel so many times that Eli's doctors all tip-toe around alot of subjects that we all know are right there needing discussed. We are hoping that his new primary doctor will be able to openly honestly handle these types of discussions.
Where the rest of us are...
Bob and I are exhausted. Currently Eli only has 36 if his 84 hrs a week covered. This means that Bob and I are 100% in charge of his care 132 hrs a week. It's exhausting and Eli is continuing to be more and more work each day. We are constantly reassessing and making changes. It's a games of numbers and we are always re-figuring and just trying to keep up.
Emily ~ She's busy as always with school. She is involved in her 2nd book club of the year, still in choir and strings and student counsel as well. To top it all off she has decided to audition for the school talent show and is working on picking the perfect song! She's hitting the age where she is becoming boy crazed and that's always fun for Bob and I to hear all about!
Jace ~ He's doing pretty well with school. He made some advancements on his last report card as well on his IEP speech goals. Some things are still proving to be quite the challenge. Assessments are coming up and this will be the first time that his IEP accommodation will be in place. We are really hoping that will help Jace out and allow him to feel more comfortable witht he testing. He's still enjoying school and making new friends. He won an award this month with this school and we were all super excited about that!
Benjamin ~ He's doing decent in school. Like always still struggling on many things. He has moved into the class clown role as he's learned that he can make his classmates laugh and he enjoys that interaction. That combined with his constant moving and spinning and pacing has gotten him in trouble multiple times lately. He's still getting all of his IEP accommodation and is making VERY slow progress towards reaching his goals. At home he still stays super busy on his kindle fire or the nintendo or Wii.
Ariana ~ She's turning into such a stubborn little lady. She's girly as could be but beyond rough and tough. Just last week she used Emily's razor to "practice" shaving like Emily and Bob. She shaved all of the skin right off her chin. Then 2 days later she got a huge splinter in the palm of her hand. She makes it thru all of these events with virtually no tears and her hair perfectly in pig tails or braids. It's interesting to watch. She is loving school and doing well. She has learned almost all of her ABC's and now knows her numbers up to 13! She knows all of her shapes and colors!
I think that sums us all up for now. I will get on tomorrow after the geneticist and update. By that point I should hopefully have some more detailed information on where we go for here.
We are frequently asked for specific things that people can send thoughts or prayers for...
1. For Eli. He is my little fighter and I'm constantly amazed by his strength. That being said his lungs are really slowing him down. He's struggling with keeping up with what he wants to do and it's really interfering with his desire to play. He ends up needing to take frequent breaks and have others help him do some of the things he would normally on his own. He so badly wants to be a normal 2 yr old and play and his lungs are making that impossible.
2. For Eli's doctors and nurses. We are losing so many people to the complexities of our little man. We need a strong team that is as strong a fighter as our little man. We need them to be able to make good decisions that balance Eli body AND Eli's quality of life. We also need them to communicate with us openly and honestly and clearly.
3. For us. Bob and I struggle each day to just get thru it. We are lonely, so lonely. We feel isolated and honestly very depressed quite often. It is such a struggle caring for a little one like Eli. It is literally taking EVERYTHING that we have. It is also tough for the oldest 4. They understand only pieces of it, and it can be scary for them. They do such an amazing job staying strong for our little man and they shower him with so much love it's overwhelming to watch. Their connection with him is intense.
4. Lastly and VERY importantly we ask for thoughts and prayers for all of the other families out there. I know that you are here reading our journey BUT please never forget that there are families on similar journeys. There are other little warriors out there fighting thru each and every day. There are other exhausted parents out there fighting for what is best for their kiddos, fighting to make it thru each day. Please please please never forget that there is a whole community of us, a whole community fighting thru each and every day, leaning on each other, sticking together as one big unconventional family held together by this horrible disease of Mito.
Sunday, January 1, 2012
New Years Day Updates
Sorry we are so behind on updates here. Alot has happened over these last few days and Bob and I have had to process it all.
When we got to the ER monday, Eli was started choking at the triage desk. I asked for suction and they couldn't find it. So they decided to have a CNA rush us back to a room. 3 steps down the hall is when the bleeding started. She took us to the room and stood there frozen. I kept yelling at her to get me suction and a doctor. At this point Eli was choking and changing colors and blood was pouring out of his nose, mouth, and stomach. Bob and I had 1 blanket and a bulb syringe. A RN heard me yelling for help and came running in, while the CNA still stood frozen. They grabbed everything up and ran us down to the Trauma rooms. So this was issue Number 1.
Then I kept telling them they had to get D10 running because Eli wouldn't maintain his sugars for very long on his own, especially when he's sick. Doc put in orders. We were transferred from the ER upstairs to his room. I kept pushing for D10 and sugar checks. Eli started getting really shaky. I again demanded D10 and a sugar check. The care assistant said he'd never done a sugar check and stuck Eli with the big heel stick razors. Eli's sugar was 56. Finally the nurse brought D10 but it was to late. 2 minutes later Eli had a grand mal seizure. Bob yelled into the hall for help and a nurse walking by stood in the hall watching and said holy cow he's lifting off the bed. She didn't come help and ran to get a doc. The floor nurses kept saying we aren't a diabetic floor we don't know what to do. Eli was given no meds to raise his sugar. He laid there after the seizure shaking uncontrollably. Issue Number 2.
So then we had to get all of his orders fixed. It was a mess. His meds were all wrong, his feeds and fluids were jacked. The nurses had no idea what they were doing because it wasn't a neuro floor or a diabetic floor. (dumb asses it's a children's hospital you should know what you are doing.)
The residents kept screwing up his orders and his labs. When we had the CT the resident originally told me that he had some pneumonia in the right lung. Then when we got transferred to PICU we were shown the CT and talked to about it and both of Eli's lungs were full of pneumonia and there was collapse in both lungs, and the right lung had significant collapsing.
Also orders were placed for Eli to be getting his cough assist Q4, IPPB Q6, and his hypertonic saline Q8. Apparently these weren't all getting done. The RT was coming in during the night and if he was sleeping she was chosing not to do it. We ended up in the PICU because of this. He was getting so sick and so they weren't sure what was going on and decided he needed PICU. We got down there and they wanted to simply follow the orders for a few and see how he did. He immediately started improving. So he simply needed the floor orders followed, and didn't need any additional supports.
When it was time to go back out to the floor I refused the same floor we had been on. So we were sent to a new floor. As soon we got here the charge nurse called the floor supervisor complaining that they couldn't deal with this many complex kids. I was like WOW really. So then get settled and basically closed ourselves in our room.
Then we lost Eli's midline. The line they swore would last 2 weeks didn't even make it 2 full days. Not only did we lose it but Eli had streaking all the way up his leg and a large red hard spot on his groin. They were unsure if it was a clot or infection. Finally got that all fixed.
Then they couldn't draw lovenox levels. They had trouble drawing so the nurse just gave up. So we were on lovenox for days with no levels drawn. We were struggling to get any blood out of him at all and couldn't even get finger sticks. So they DC'd the lovenox finally.
Then Eli kept swelling and having weird pee issues and nobody could figure out why. Yesterday the nurse and I were trying to trouble shoot it. Come to find out they had screwed up his formula orders. They were mixing all of his formula with 28oz of pedialyte instead of water. Nobody knows why this was happening. But pedialyte and Eli don't mix. Mind you I had told them exactly what he needs for formula as well as written it all down for them 16 times by this point. Then as we were going thru the computer and every single order we found another MAJOR issue. They had been giving Eli the wrong medication. He is supposed to have 1/8 tsp of salt mixed into his days worth of formula. The resident was confused an ordered sodium chloride in a 20 ml syringe. They were giving him the whole thing. So he was getting like 10 times the sodium his little body needs. That kicked everyone into high gear. He had to have multiple sticks and alot of labs all run stat. His sodium levels weren't to the danger high but well on there was and WAY higher than when we got to the hospital.
By this point I was ready to explode. The attending were here, the hospital supervisor, charge nurses, everyone. There was a long talk over all of the mistakes that have happened since we arrived here. They admitted that they had messed up ALOT and that they had in fact made Eli sicker with some of the mistakes. I told them I didn't trust a single person here and that I was so scared that they were going to kill my child.
We spent hrs going thru every single med, formula, treatment, etc. Now the nurses are required to let me look at every med label, every formula bottle, every order in the computer, all of his MARS, etc. The residents are no longer able to change any orders and everything has to go thru me and the attending.
It's very scary. At the time we didn't know all these things were happening. It was alot of new meds and treatments and we didn't understand all of it and didn't realize that it wasn't all being done.
So currently Eli is improving, slowly. I'm spending every waking second monitoring him and all of the nurses and RT's and such. They docs are being incredibly cautious. I have been apologized to so many times I'm just going to scream if 1 more person says I'm sorry. I don't want an I'm sorry I want them to fix it.
Eli is awake more. He's still not able to sit up on his own but has been able to prop up in a tumbleform chair a few times. They have brought him a table to put in bed with him so that he can watch his Ipad and some of his Signing Times movies. He's still requiring O2 and we know immediately if he pulls his nasal canulas because he immediately drops his sats to the high 70's and low 80's. He's now getting IPPB and hypertonic saline every 6 hrs and these really seem to help him. We are on J feeds and he's tolerating them really well so far. The antibiotics are really starting to cause some issues but we are hoping to be able to keep up with that without having to get another line placed. They are holding all salts while his sodium levels try and resituate by themselves.
Bob and I are exhausted. All of the things that we have found out over the last 24 to 48 hrs have really caused us alot of concern and we needed time to absorb it all and sort it all out and to figure out where to go from there. Tomorrow we will be meeting with a special patient advocate team to file formal complaints and investigations into all of it. The doctors have already filed all of that on their end, but now we have to on our end as well.
I promise to keep up better with udpates at this point! Thank you!!
When we got to the ER monday, Eli was started choking at the triage desk. I asked for suction and they couldn't find it. So they decided to have a CNA rush us back to a room. 3 steps down the hall is when the bleeding started. She took us to the room and stood there frozen. I kept yelling at her to get me suction and a doctor. At this point Eli was choking and changing colors and blood was pouring out of his nose, mouth, and stomach. Bob and I had 1 blanket and a bulb syringe. A RN heard me yelling for help and came running in, while the CNA still stood frozen. They grabbed everything up and ran us down to the Trauma rooms. So this was issue Number 1.
Then I kept telling them they had to get D10 running because Eli wouldn't maintain his sugars for very long on his own, especially when he's sick. Doc put in orders. We were transferred from the ER upstairs to his room. I kept pushing for D10 and sugar checks. Eli started getting really shaky. I again demanded D10 and a sugar check. The care assistant said he'd never done a sugar check and stuck Eli with the big heel stick razors. Eli's sugar was 56. Finally the nurse brought D10 but it was to late. 2 minutes later Eli had a grand mal seizure. Bob yelled into the hall for help and a nurse walking by stood in the hall watching and said holy cow he's lifting off the bed. She didn't come help and ran to get a doc. The floor nurses kept saying we aren't a diabetic floor we don't know what to do. Eli was given no meds to raise his sugar. He laid there after the seizure shaking uncontrollably. Issue Number 2.
So then we had to get all of his orders fixed. It was a mess. His meds were all wrong, his feeds and fluids were jacked. The nurses had no idea what they were doing because it wasn't a neuro floor or a diabetic floor. (dumb asses it's a children's hospital you should know what you are doing.)
The residents kept screwing up his orders and his labs. When we had the CT the resident originally told me that he had some pneumonia in the right lung. Then when we got transferred to PICU we were shown the CT and talked to about it and both of Eli's lungs were full of pneumonia and there was collapse in both lungs, and the right lung had significant collapsing.
Also orders were placed for Eli to be getting his cough assist Q4, IPPB Q6, and his hypertonic saline Q8. Apparently these weren't all getting done. The RT was coming in during the night and if he was sleeping she was chosing not to do it. We ended up in the PICU because of this. He was getting so sick and so they weren't sure what was going on and decided he needed PICU. We got down there and they wanted to simply follow the orders for a few and see how he did. He immediately started improving. So he simply needed the floor orders followed, and didn't need any additional supports.
When it was time to go back out to the floor I refused the same floor we had been on. So we were sent to a new floor. As soon we got here the charge nurse called the floor supervisor complaining that they couldn't deal with this many complex kids. I was like WOW really. So then get settled and basically closed ourselves in our room.
Then we lost Eli's midline. The line they swore would last 2 weeks didn't even make it 2 full days. Not only did we lose it but Eli had streaking all the way up his leg and a large red hard spot on his groin. They were unsure if it was a clot or infection. Finally got that all fixed.
Then they couldn't draw lovenox levels. They had trouble drawing so the nurse just gave up. So we were on lovenox for days with no levels drawn. We were struggling to get any blood out of him at all and couldn't even get finger sticks. So they DC'd the lovenox finally.
Then Eli kept swelling and having weird pee issues and nobody could figure out why. Yesterday the nurse and I were trying to trouble shoot it. Come to find out they had screwed up his formula orders. They were mixing all of his formula with 28oz of pedialyte instead of water. Nobody knows why this was happening. But pedialyte and Eli don't mix. Mind you I had told them exactly what he needs for formula as well as written it all down for them 16 times by this point. Then as we were going thru the computer and every single order we found another MAJOR issue. They had been giving Eli the wrong medication. He is supposed to have 1/8 tsp of salt mixed into his days worth of formula. The resident was confused an ordered sodium chloride in a 20 ml syringe. They were giving him the whole thing. So he was getting like 10 times the sodium his little body needs. That kicked everyone into high gear. He had to have multiple sticks and alot of labs all run stat. His sodium levels weren't to the danger high but well on there was and WAY higher than when we got to the hospital.
By this point I was ready to explode. The attending were here, the hospital supervisor, charge nurses, everyone. There was a long talk over all of the mistakes that have happened since we arrived here. They admitted that they had messed up ALOT and that they had in fact made Eli sicker with some of the mistakes. I told them I didn't trust a single person here and that I was so scared that they were going to kill my child.
We spent hrs going thru every single med, formula, treatment, etc. Now the nurses are required to let me look at every med label, every formula bottle, every order in the computer, all of his MARS, etc. The residents are no longer able to change any orders and everything has to go thru me and the attending.
It's very scary. At the time we didn't know all these things were happening. It was alot of new meds and treatments and we didn't understand all of it and didn't realize that it wasn't all being done.
So currently Eli is improving, slowly. I'm spending every waking second monitoring him and all of the nurses and RT's and such. They docs are being incredibly cautious. I have been apologized to so many times I'm just going to scream if 1 more person says I'm sorry. I don't want an I'm sorry I want them to fix it.
Eli is awake more. He's still not able to sit up on his own but has been able to prop up in a tumbleform chair a few times. They have brought him a table to put in bed with him so that he can watch his Ipad and some of his Signing Times movies. He's still requiring O2 and we know immediately if he pulls his nasal canulas because he immediately drops his sats to the high 70's and low 80's. He's now getting IPPB and hypertonic saline every 6 hrs and these really seem to help him. We are on J feeds and he's tolerating them really well so far. The antibiotics are really starting to cause some issues but we are hoping to be able to keep up with that without having to get another line placed. They are holding all salts while his sodium levels try and resituate by themselves.
Bob and I are exhausted. All of the things that we have found out over the last 24 to 48 hrs have really caused us alot of concern and we needed time to absorb it all and sort it all out and to figure out where to go from there. Tomorrow we will be meeting with a special patient advocate team to file formal complaints and investigations into all of it. The doctors have already filed all of that on their end, but now we have to on our end as well.
I promise to keep up better with udpates at this point! Thank you!!
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