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!
Tuesday, February 21, 2012
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!!
Thursday, December 29, 2011
Thursday Evening Updates
This morning Eli and I got to cuddle for about 30 minutes. He was fidgetty and upset so the nurse thought it would be a good opportunity to give it a try. He did pretty decent. His resps were higher and his O2 was a bit lower, but all in all he did pretty well.
This morning Eli was also a bit wheezy with more crackle in his lungs. By early afternoon his sats were hanging out in the low 90's. So they did his IPPB and decided to leave him on BiPAP to try and help inflate his lungs some more. At this point we were informed that the CT showed full on pneumonia in BOTH lungs as well as lung collapse. They decided with his increased need for O2, the fact that he was still retracting, and the sounds of his lungs that it was going to be best to move him back into a full PICU setting. So here we sit. Since being back in PICU he has done great on high flow O2 mask and hasn't required BiPAP. The intensivist came in and spent some time going over his history and all of this current illness. She understand him being a super complex kiddo and does agree that Eli can do things quickly and dramatically. That being said at the moment he's doing really well considering everything that is going on. The secretions are still super thick and super far down so that's still a major hurdle we have to get over. They are unsure of if he's at the worst of it or if it's going to continue to get worse before it gets better. So right now it's a wait and see game. It's really up to his little body.
So currently PICU is maintianing where he is at and waiting to see what he does this evening. Bob and I are beyond exhausted, especially in light of all of the last minute dramatic changes today.
We will have alot better idea of where we are in the next 24-48 hrs.
oh and on an extra side note...Eli woke for a few while here in PICU and smiled!!! :) It was the most beautiful smile ever!!!
More updates tomorrow!
In closing here is a pic of little man with his brand new sock monkey with a mito ribbon!!!
This morning Eli was also a bit wheezy with more crackle in his lungs. By early afternoon his sats were hanging out in the low 90's. So they did his IPPB and decided to leave him on BiPAP to try and help inflate his lungs some more. At this point we were informed that the CT showed full on pneumonia in BOTH lungs as well as lung collapse. They decided with his increased need for O2, the fact that he was still retracting, and the sounds of his lungs that it was going to be best to move him back into a full PICU setting. So here we sit. Since being back in PICU he has done great on high flow O2 mask and hasn't required BiPAP. The intensivist came in and spent some time going over his history and all of this current illness. She understand him being a super complex kiddo and does agree that Eli can do things quickly and dramatically. That being said at the moment he's doing really well considering everything that is going on. The secretions are still super thick and super far down so that's still a major hurdle we have to get over. They are unsure of if he's at the worst of it or if it's going to continue to get worse before it gets better. So right now it's a wait and see game. It's really up to his little body.
So currently PICU is maintianing where he is at and waiting to see what he does this evening. Bob and I are beyond exhausted, especially in light of all of the last minute dramatic changes today.
We will have alot better idea of where we are in the next 24-48 hrs.
oh and on an extra side note...Eli woke for a few while here in PICU and smiled!!! :) It was the most beautiful smile ever!!!
More updates tomorrow!
In closing here is a pic of little man with his brand new sock monkey with a mito ribbon!!!
Final Cultures and Labs Bearing Answers
Well we just got Eli's final cultures and labs back. Not only is Eli's right lung full of pneumonia but he also has Metapneumovirus (closely related to RSV). So not only are his lungs blocked and full of fluid but so are all of the tiny tubes that carry O2 back and forth. She said that Eli is very ill and that this isn't something he will move past quickly. She expects to see him hospital for a few more weeks. The meds we are on and all of the treatments are the best that they can do right now. They aren't at the point of leveling off yet, so we still have to reach the plateau of it all and then finally start the weaning off process. They are hoping that they can keep his lungs expanded as much as possible to help keep secretions from settling. He will continue to receive high O2 supports as well. They are hoping that the increase in feeds won't put to much pressure on his lungs and his breathing so this is something that will be watched closely.
Neuro never came yesterday so she is pushing for them to come today. She is hopeful that he will fully recover and go back to the same neurological state we were at before but that it is to early to tell. She said he is unfortunately dealt with being hypoxic and that is what is causing him pain and panic. She said that she isn't surprised that he isn't comfortable with allowing us to move him as when he's moved it's even harder for him to breath causing more hypoxia and she said he can feel that when it is occuring.
So again we are trying to absorb all of this information and hoping that we are as strong of fighters as our little man because the doctor made it very clear that we have a long road ahead.
Neuro never came yesterday so she is pushing for them to come today. She is hopeful that he will fully recover and go back to the same neurological state we were at before but that it is to early to tell. She said he is unfortunately dealt with being hypoxic and that is what is causing him pain and panic. She said that she isn't surprised that he isn't comfortable with allowing us to move him as when he's moved it's even harder for him to breath causing more hypoxia and she said he can feel that when it is occuring.
So again we are trying to absorb all of this information and hoping that we are as strong of fighters as our little man because the doctor made it very clear that we have a long road ahead.
Wednesday, December 28, 2011
Wednesday ( I think)
days are running as a blur at this point. Here are a list of facebook posts for the day to atleast keep those people updated that aren't on facebook but do read my blog!
Morning resident rounds have finished up. Eli's right lung is sounding worse and he's wheezing and secretions are sooo sooo thick. Neurologically something is still very deeply off. Pain is controlled until he's touched or moved. Fevers still. They are calling in Eli's pulmonologist and neurologist for consults today. We appear to still be missing something, but unsure what. We will update today as we know more. All of the thoughts, prayers, texts, posts, and emails are greatly appreciated!!!! Thank you!
docs all rounded. pulm was called and they came by. Waiting on neuro. The did critical labs to check his blood gas. pulm thinks we need to back down greatly on robanul, adding a new med, and is thinking bipap full time is needed. He's concerned on how thick the secretions are. Also breathing is wearing eli out so bad. he's still dehydrated although he's getting almost double his fluid needs. we are waiting on neuro as everyone agrees he isn't neurologically normal. Also we are losing the IV so they want to put in a midline, which is like a picc line. So they are calling hemoc to discuss the risk of clots and what we need to do to prevent. Eli has opened his eyes once or twice briefly, still having alot of pain response to movements and touch, and hasn't peed since 6am.
Vascular access is getting ready to run a midline, which is like a picc line but doesnt go all the way into the chest. Lasts 1-2 weeks but can be rethreaded to make into a picc. Hemoc wants lovenox restarted. :( With the line and eli refusing repositioning because of pain we will now go on lovenox injections BID. They are starting IPPB as well and hoping that will help him some with his breathing. They have also started J feeds at 10ml/hr to see how his body will handle. Still waiting on Neuro.
Intermittent Positive Pressure Breathing (IPPB). how it was explained to us is that it is like a bipap concept where it will help push special meds and breathing treatments down into his lungs which opens things up deeper helping to get more meds in there better and can also help push out and break up some of the pneumonia. He gets his first one here in a few so I will have a way better answer after actually seeing it in action. :
And lastly in news the oldest 4 kiddos have headed for a mini vacation in Wichita with my parents. My parents have been up here over Christmas but have taken the kids back there for a few days. The kids will enjoy a mini break away!
More updates later this evening!
Morning resident rounds have finished up. Eli's right lung is sounding worse and he's wheezing and secretions are sooo sooo thick. Neurologically something is still very deeply off. Pain is controlled until he's touched or moved. Fevers still. They are calling in Eli's pulmonologist and neurologist for consults today. We appear to still be missing something, but unsure what. We will update today as we know more. All of the thoughts, prayers, texts, posts, and emails are greatly appreciated!!!! Thank you!
docs all rounded. pulm was called and they came by. Waiting on neuro. The did critical labs to check his blood gas. pulm thinks we need to back down greatly on robanul, adding a new med, and is thinking bipap full time is needed. He's concerned on how thick the secretions are. Also breathing is wearing eli out so bad. he's still dehydrated although he's getting almost double his fluid needs. we are waiting on neuro as everyone agrees he isn't neurologically normal. Also we are losing the IV so they want to put in a midline, which is like a picc line. So they are calling hemoc to discuss the risk of clots and what we need to do to prevent. Eli has opened his eyes once or twice briefly, still having alot of pain response to movements and touch, and hasn't peed since 6am.
Vascular access is getting ready to run a midline, which is like a picc line but doesnt go all the way into the chest. Lasts 1-2 weeks but can be rethreaded to make into a picc. Hemoc wants lovenox restarted. :( With the line and eli refusing repositioning because of pain we will now go on lovenox injections BID. They are starting IPPB as well and hoping that will help him some with his breathing. They have also started J feeds at 10ml/hr to see how his body will handle. Still waiting on Neuro.
Intermittent Positive Pressure Breathing (IPPB). how it was explained to us is that it is like a bipap concept where it will help push special meds and breathing treatments down into his lungs which opens things up deeper helping to get more meds in there better and can also help push out and break up some of the pneumonia. He gets his first one here in a few so I will have a way better answer after actually seeing it in action. :
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| Resting earlier this morning |
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| Resting |
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| his brand new midline in his right foot. They got it on the 1st stick!!!! |
More updates later this evening!
Tuesday, December 27, 2011
Evening update
Docs have made evening rounds. Some changes will happen tonight. Starting him on some new pain meds and increasing some as well. Giving him some benadryl to try and help comfort. Fever is back up (103.3), and he's retracting and wheezing some again. sugars have been stable. Still only using IV. Will trial J tube tomorrow. Also attempting to lower his O2 a bit to try and figure out how much he's requiring and how much is just being given as extra. The biggest priorities for the night is to help handle the pain. His mental status is off and he's very aggitated and uncomfortable. He is still refusing to open his eyes or have any interaction with us. Hoping to see some changes tomorrow. Oh and the ECHO came back showing that his damn blood clot is still there, small but there. Damn clot.
Early Evening Update
Eli had his CT scan. They ended up having to go an LMA instead of a full intubation. He did decent. Immediately following they did his ECHO. We got back to his room and he was still having alot of trouble with breathing and secretions and such.
well the good news is he doesn't have a blood clot in his lungs. The bad news is his entire right lung has a very bad pneumonia. They are changing around his antibiotics and putting him on 2 high dose ones. They are also upping his pain meds as he's still in alot of pain, to the point we still can't hold him or touch him. He's going on 48 hrs with only 1 wet diaper. The goal for tonight is to get all the new meds going and try to get his pain a bit more under control. We are still waiting on the results of his echo.
As always we will update as soon as we know more!
well the good news is he doesn't have a blood clot in his lungs. The bad news is his entire right lung has a very bad pneumonia. They are changing around his antibiotics and putting him on 2 high dose ones. They are also upping his pain meds as he's still in alot of pain, to the point we still can't hold him or touch him. He's going on 48 hrs with only 1 wet diaper. The goal for tonight is to get all the new meds going and try to get his pain a bit more under control. We are still waiting on the results of his echo.
As always we will update as soon as we know more!
Early Afternoon Update **Updated
What an emotionally draining morning.
The residents did first rounds this morning and she was concerned about the changes in Eli's breathing. he is requiring more O2 and is retracting, wheezing, choking alot, and in general working very hard to breath. The team all met and spent a ton of time going over Eli.
They have decided to run every single virus panel that is available to them. They also have started a high dose IV antibiotic as they are concerned about pneumonia.
He still isn't awake or alert and we are at 24hrs of this. His fever is currently down, but unsure how long that will remain stable.
The doctors all voiced a deep concern over how drastically sick he is and how they are unsure why. they are also concerned about his heart and the pressure it is currently under. they have called his cardiologist and ordered echos and a full heart workup.
They have also spoken with his pulmonologist and are starting him on cough assist every 4 hrs as well as increasing all of his rescue breathing treatments.
They are going to be doing alot of things in a short amount of time. The doctors were very serious and very concerned with the downward decline of his respiratory status and the lack of waking and such.
He did go down to get his GJ checked and the placement is good, his intestines are just not sure if they want to properly function yet. Currently he's only on Iv fluids and meds but we will start some trials with the J tube at some point to see if we can get something pushed thru.
We are exhausted and so is Eli. We are nervous about what is happening and nervous about the doctors uncertainty and concerns.
Like always we will update more as we know more.
We appreciate all of the kind thoughts, prayers, emails, texts, and phone calls! It is so nice to know that we aren't alone and that so many people are joining together to support our little man!
Updated 12:35pm
The residents did first rounds this morning and she was concerned about the changes in Eli's breathing. he is requiring more O2 and is retracting, wheezing, choking alot, and in general working very hard to breath. The team all met and spent a ton of time going over Eli.
They have decided to run every single virus panel that is available to them. They also have started a high dose IV antibiotic as they are concerned about pneumonia.
He still isn't awake or alert and we are at 24hrs of this. His fever is currently down, but unsure how long that will remain stable.
The doctors all voiced a deep concern over how drastically sick he is and how they are unsure why. they are also concerned about his heart and the pressure it is currently under. they have called his cardiologist and ordered echos and a full heart workup.
They have also spoken with his pulmonologist and are starting him on cough assist every 4 hrs as well as increasing all of his rescue breathing treatments.
They are going to be doing alot of things in a short amount of time. The doctors were very serious and very concerned with the downward decline of his respiratory status and the lack of waking and such.
He did go down to get his GJ checked and the placement is good, his intestines are just not sure if they want to properly function yet. Currently he's only on Iv fluids and meds but we will start some trials with the J tube at some point to see if we can get something pushed thru.
We are exhausted and so is Eli. We are nervous about what is happening and nervous about the doctors uncertainty and concerns.
Like always we will update more as we know more.
We appreciate all of the kind thoughts, prayers, emails, texts, and phone calls! It is so nice to know that we aren't alone and that so many people are joining together to support our little man!
Updated 12:35pm
how things change so quickly in the hospital. 103 fever. doc came in. apparently eli is the talk of the hospital. They are taking him to a CT scan to make sure he doesn't have a blood clot in his lungs. With a blood clotting disorder and a history of blood clots they think it's a good idea to check. they are hoping to make it thru the CT without any anesthesia or intubation as it will be sooo hard to wean him off afterwards with him being sick.
Eli updates
Eli woke sick Christmas eve. By mid afternoon his heartrate and resps were very high and his temp was around 101.5. Called the doc and they had us take him in to the ER. They did Xrays and ran alot of labs. His lungs looked pretty good, and his stomach xrays showed alot of gas but didn't appear to be an issue either. We were sent home, thinking it was a virus and to just see how he did.
Christmas morning Eli had a 103.4 fever and was very lethargic. Still very high heart rate and resps. Doc called. He had us give a higher dose of tylenol in hopes of getting everything back under control. Eli pretty much slept the day away.
Eli woke up the day after really struggling. his temp was still pretty high and his heart rate and resps as well. But to add to it all he was retracting a bit and grunting with his breathing. By this point he could barely hold himself up. Called the docs again and they had us take him into the main campus trauma center. We walked in the front door of the ER and Eli started choking. Next thing everyone knew there was blood coming out of his nose, mouth and stomach. We are obviously rushed back to a trauma room and people came from every direction. They immediately type and crossed him and had the blood bank hold blood. Ran tons of labs and xrays. Eli had to be put on 6liters/min O2 by mask and was put on tons of monitors. By this point his heart rate was 180's and his resps were around 77. His J tube and intestines stopped working and so did his urinary system. Eli was quickly admitted and transferred to the surgical / PICU floor so he would be close to all units. He became even more unstable once in his room. His temp shot up to 104.4, heart rate and resps even higher. His blood sugar dropped fast and he had a full body grand mal seizure, followed by 2 hrs of shaking. It took a while for his blood sugar to finally stabilize. He has yet to wake and has been in quite a bit of pain. If he's touched or moved he winces and cries out. His secretions are unmanageable for him. He's not got the energy to cough and with his stomach and intestines not moving there is no where for it all to go. The docs are concerned to suction to much with the major bleeding from earlier. Eli will start choking and you can hear it all in there, and he starts panicking which makes it even worse. We are doing everything we can to help him, and trying not to move him. Within the last hr his blood pressure has dropped as well, now resting around 70/32. His O2 has also dropped some, but not wanting to turn his O2 up much more, because we don't want to dry him out to much, again after all the bleeding earlier.
The plan is to simply get thru the night so we can start investigating in the morning. They have a ton of tests ordered and need to get his main docs on board. Right now he's getting vitals every hr, a TON of tylenol, he's on IV fluids and meds, and has cold rags being constantly rotated out. He's only peed once in 24hrs, so that is being watched closely as well. There are emergency meds and emergency plans in place to deal with the blood sugars and seizures and all of that. His doc and nurse tonight are really good and have been communicating well and really staying on top of things.
bob and I are resting in shifts, with no actual sleep involved. We are exhausted and really scared. Eli has never been this sick and the docs have never been this unsure of what is happening. Please keep my little guy in your thoughts and prayers as he really needs it!
Here are 2 pics from last night.
Christmas morning Eli had a 103.4 fever and was very lethargic. Still very high heart rate and resps. Doc called. He had us give a higher dose of tylenol in hopes of getting everything back under control. Eli pretty much slept the day away.
Eli woke up the day after really struggling. his temp was still pretty high and his heart rate and resps as well. But to add to it all he was retracting a bit and grunting with his breathing. By this point he could barely hold himself up. Called the docs again and they had us take him into the main campus trauma center. We walked in the front door of the ER and Eli started choking. Next thing everyone knew there was blood coming out of his nose, mouth and stomach. We are obviously rushed back to a trauma room and people came from every direction. They immediately type and crossed him and had the blood bank hold blood. Ran tons of labs and xrays. Eli had to be put on 6liters/min O2 by mask and was put on tons of monitors. By this point his heart rate was 180's and his resps were around 77. His J tube and intestines stopped working and so did his urinary system. Eli was quickly admitted and transferred to the surgical / PICU floor so he would be close to all units. He became even more unstable once in his room. His temp shot up to 104.4, heart rate and resps even higher. His blood sugar dropped fast and he had a full body grand mal seizure, followed by 2 hrs of shaking. It took a while for his blood sugar to finally stabilize. He has yet to wake and has been in quite a bit of pain. If he's touched or moved he winces and cries out. His secretions are unmanageable for him. He's not got the energy to cough and with his stomach and intestines not moving there is no where for it all to go. The docs are concerned to suction to much with the major bleeding from earlier. Eli will start choking and you can hear it all in there, and he starts panicking which makes it even worse. We are doing everything we can to help him, and trying not to move him. Within the last hr his blood pressure has dropped as well, now resting around 70/32. His O2 has also dropped some, but not wanting to turn his O2 up much more, because we don't want to dry him out to much, again after all the bleeding earlier.
The plan is to simply get thru the night so we can start investigating in the morning. They have a ton of tests ordered and need to get his main docs on board. Right now he's getting vitals every hr, a TON of tylenol, he's on IV fluids and meds, and has cold rags being constantly rotated out. He's only peed once in 24hrs, so that is being watched closely as well. There are emergency meds and emergency plans in place to deal with the blood sugars and seizures and all of that. His doc and nurse tonight are really good and have been communicating well and really staying on top of things.
bob and I are resting in shifts, with no actual sleep involved. We are exhausted and really scared. Eli has never been this sick and the docs have never been this unsure of what is happening. Please keep my little guy in your thoughts and prayers as he really needs it!
Here are 2 pics from last night.
Tuesday, December 20, 2011
A Normal Moment
Monday evening I was working on getting Eli ready for bed. This unto itself is a LOOONG process. He was playing with some toys on the floor while I got ready to start meds. He comes over and starts playing with his fridge door. Slamming it and trying to pull it open. He grabbed it and tried to pull and I held the door so he couldn't slam it into himself. He tipped over and landed on the carpet, busting up laughing. I of course laughed back. He got up crawled over and grabbed the cup full of syringe plungers and threw it on the floor. He immediately started laughing. I laughed, picked them up, put them back, and he immediately did it again. This went on 3 or 4 times with him laughing as hard as he could each time he threw the syringes over. I of course laughed in turn. It was one of the most precious moments ever. I scooped him up and hugged him so darned hard. For Eli and I this WAS communication. This was his game. For Eli this was a total normal kid moment. It was so amazing. It was a game that Eli and I were able to simply play interacting back and forth. For us this was HUGE.
I can't wait for more experiences like this. I hope we get more, and I hope we get them soon.
I can't wait for more experiences like this. I hope we get more, and I hope we get them soon.
Thursday, December 15, 2011
Care Conference
Today was Eli's care conference. We were there for a few hrs. It was probably the most exhausting meeting we have ever been to.
I honestly don't have the energy to go into all the details so I will give highlights!
1. We are going to slowly begin backing down on the robanul.
2. We are going to add a new medication that's given by nebulizer. It helps lower secretions and supposedly has less side effects.
3. No trach right now.
4. O2 can be used from 1/2 to 1 1/2 liters without needing to call the doc on prior auth. It can be used day and night.
5. Hold on the BiPAP right now as he chokes and gags so much worse because it's pushing more secretions down.
6. Lastly and most importantly. Eli's heartrate is very high and so are his respirations still. He is also consistently running a low grade temp as well as having alot of bright red spells. His docs believe he's experiencing some respiratory distress issues. They also believe the robanul is contributing some. They also believe that Eli's heart is in general struggling to keep up. It's having a hard time keeping up with pumping enough blood to his body, keeping things regulated, dealing with the respiratory distress, and all those other things. They aren't sure why this is happening, beyond the fact that Eli has this horrible fucking disease. Damn Mito. His cardiologist is concerned about Eli's body using up so many heart beats so fast, and he's concerned the long term stress this is putting on his body. He will be watching closely for signs of Cardiac Myopathy as these issues increase the risk.
Basically we are going to try a few things, change some others, and simply deal with the fact that Eli's needs are again changing. We have settled in decently to the use of full time O2, and we do definitely see improvements with it.
We are most concerned about the heart issues. There are a few organs that are obviously the scariest for us as parents and this is definitely one of them. We are concerned about the risks, and so are his doctors. We are at another brick wall, where the doctors can't fix it and they have nothing more they can test, nothing more they can try, nothing more they can do, but wait and see. These are the most frightening situations for us. As parents we want it fixed, NOW.
There was alot of emotion at the meeting, by all of us. After we left we stood in the parking garage with Eli's primary speech therapist talking and crying. She has gotten to be a close friend of our families and we value her so very much.
We came home from the meeting and immediately following I got another phone call from Emily's school. Her asthma was flaring up worse than yesterday and she had required 2 breathing treatments in less than 3 hrs. We called her doc and they said ER. We got there and her chest was hurting and she was having a decent bit of trouble breathing. They gave her steroids and changed around her entire asthma action plan. She is now on a more concentrated meds for her prevention meds and for her rescue meds. Instead of using the nebulizer she is now using inhalers with spacers to get the full dose of meds. She will also continue steroids for atleast the next 5 days. She's doing a bit better this evening but still pretty sore and wheezing a bit. Hopefully after her new meds tonight she can get some decent sleep.
Other than that the older kiddos are busy with finishing up school for the semester. Tomorrow is the oldest 3's last day and Monday is Ari's. So alot of Christmas parties coming up! The kids are super excited!
More updates soon after we have time to absorb all this information.
I honestly don't have the energy to go into all the details so I will give highlights!
1. We are going to slowly begin backing down on the robanul.
2. We are going to add a new medication that's given by nebulizer. It helps lower secretions and supposedly has less side effects.
3. No trach right now.
4. O2 can be used from 1/2 to 1 1/2 liters without needing to call the doc on prior auth. It can be used day and night.
5. Hold on the BiPAP right now as he chokes and gags so much worse because it's pushing more secretions down.
6. Lastly and most importantly. Eli's heartrate is very high and so are his respirations still. He is also consistently running a low grade temp as well as having alot of bright red spells. His docs believe he's experiencing some respiratory distress issues. They also believe the robanul is contributing some. They also believe that Eli's heart is in general struggling to keep up. It's having a hard time keeping up with pumping enough blood to his body, keeping things regulated, dealing with the respiratory distress, and all those other things. They aren't sure why this is happening, beyond the fact that Eli has this horrible fucking disease. Damn Mito. His cardiologist is concerned about Eli's body using up so many heart beats so fast, and he's concerned the long term stress this is putting on his body. He will be watching closely for signs of Cardiac Myopathy as these issues increase the risk.
Basically we are going to try a few things, change some others, and simply deal with the fact that Eli's needs are again changing. We have settled in decently to the use of full time O2, and we do definitely see improvements with it.
We are most concerned about the heart issues. There are a few organs that are obviously the scariest for us as parents and this is definitely one of them. We are concerned about the risks, and so are his doctors. We are at another brick wall, where the doctors can't fix it and they have nothing more they can test, nothing more they can try, nothing more they can do, but wait and see. These are the most frightening situations for us. As parents we want it fixed, NOW.
There was alot of emotion at the meeting, by all of us. After we left we stood in the parking garage with Eli's primary speech therapist talking and crying. She has gotten to be a close friend of our families and we value her so very much.
We came home from the meeting and immediately following I got another phone call from Emily's school. Her asthma was flaring up worse than yesterday and she had required 2 breathing treatments in less than 3 hrs. We called her doc and they said ER. We got there and her chest was hurting and she was having a decent bit of trouble breathing. They gave her steroids and changed around her entire asthma action plan. She is now on a more concentrated meds for her prevention meds and for her rescue meds. Instead of using the nebulizer she is now using inhalers with spacers to get the full dose of meds. She will also continue steroids for atleast the next 5 days. She's doing a bit better this evening but still pretty sore and wheezing a bit. Hopefully after her new meds tonight she can get some decent sleep.
Other than that the older kiddos are busy with finishing up school for the semester. Tomorrow is the oldest 3's last day and Monday is Ari's. So alot of Christmas parties coming up! The kids are super excited!
More updates soon after we have time to absorb all this information.
Wednesday, December 7, 2011
Santa
Eli's therapy group hosted a night with Santa and we were able to go this evening. Eli cried the whole time he was on Santa's lap but had fun the rest of the evening . The older 4 enjoyed themselves!
Here's a photo of all of them!
Here's a photo of all of them!
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