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.
Wednesday, January 25, 2012
Super fast Update but mostly Pics...FINALLY :)
Eli's heart rate and resps have been running high today. He had a fever this morning and was pretty tired but by this evening the fever was gone but ended up needing back on O2 to help control his sats. Hoping for a quiet evening but holding my breath.
Here are some pics!
Here are some pics!
Tuesday, January 24, 2012
Super Quick Update
It has been a fairly slow few days.
The weekend was a bit rough, as they boys were in a mood. It makes for a hard few days.
Monday was NICE. My friend picked me up and we spent 4 or 5 hrs going to tons of thrift stores digging and searching for treasures! I found some cool things and had a great time getting out and about!
Today has been a bit off. Eli had a weird night and the day has continued that way. His heart rate has been high, and his GI system is still very thrown off. His sugars have been decent today but he's flushed and exhausted. He napped over 4 hrs and has still been tired this evening. I have a call into his Geneticist/Mito doc and hoping to get some more info from him. Eli also lost weight again, which simply doesn't make sense. I will update as soon as I hear back from the doc!
Emily found out at the end of last week that she was chosen to be in the 5th Grade All District Honors Choir! She will be performing at a concert at and all district assembly the beginning of February. She's super excited and we are all excited for her!
Not much is going on with everyone else. It's not been a very info heavy few days!
We are still working on training a nurse, although she is struggling a bit with the stairs and the floor. We still don't have other prospects on nurses. It leaves us pretty close to home right now!
In closing...Comments on my blog are all moderated. I have a few readers who seem to have nothing better to do with their time but harass me. Because of this all comments have to be approved before they are posted. If you sign your name to your comment, it has a higher chance of being published.
Lastly...If you think you can do it better, or if you disagree with how we are doing something, or if you think that we are making things up, feel free to shoot me an email or give me a call and I would be more than happy to set up a weekend for you to come stay with us and follow us around participating in EVERY aspect of our lives. We will then see how easy you believe it all to be.
We 120% appreciate all of the amazing people in our lives and all of the support that we receive from you guys! You all are amazing!
The weekend was a bit rough, as they boys were in a mood. It makes for a hard few days.
Monday was NICE. My friend picked me up and we spent 4 or 5 hrs going to tons of thrift stores digging and searching for treasures! I found some cool things and had a great time getting out and about!
Today has been a bit off. Eli had a weird night and the day has continued that way. His heart rate has been high, and his GI system is still very thrown off. His sugars have been decent today but he's flushed and exhausted. He napped over 4 hrs and has still been tired this evening. I have a call into his Geneticist/Mito doc and hoping to get some more info from him. Eli also lost weight again, which simply doesn't make sense. I will update as soon as I hear back from the doc!
Emily found out at the end of last week that she was chosen to be in the 5th Grade All District Honors Choir! She will be performing at a concert at and all district assembly the beginning of February. She's super excited and we are all excited for her!
Not much is going on with everyone else. It's not been a very info heavy few days!
We are still working on training a nurse, although she is struggling a bit with the stairs and the floor. We still don't have other prospects on nurses. It leaves us pretty close to home right now!
In closing...Comments on my blog are all moderated. I have a few readers who seem to have nothing better to do with their time but harass me. Because of this all comments have to be approved before they are posted. If you sign your name to your comment, it has a higher chance of being published.
Lastly...If you think you can do it better, or if you disagree with how we are doing something, or if you think that we are making things up, feel free to shoot me an email or give me a call and I would be more than happy to set up a weekend for you to come stay with us and follow us around participating in EVERY aspect of our lives. We will then see how easy you believe it all to be.
We 120% appreciate all of the amazing people in our lives and all of the support that we receive from you guys! You all are amazing!
Wednesday, January 18, 2012
Complicated. It's all so complicated.
It's been a rough week. We were training a brand new nurse and after 45 hrs she quit because Eli was to complicated. Then this week Eli's other nurse quit because she's moving to florida to get away from a bad relationship. So we ended up with no nurses.
Then to top it off Eli had a rough week. He started with alot of respiratory issues and needing alot of extra breathing treatments and CPT to get thru it all. Then the fevers started. Then for a day or two he almost seemed like he was getting better.
Then this morning his sugars started dumping fast and we kept doing his emergency meds and they just kept dropping. They ended up dropping over 30points in 40 minutes. We spent a whole lot of time on the phone with his doctor getting orders and constantly adjusting the care plan. Eli has been on continuous feeds and has ended up needing 6 rounds of emergency treatments and he's still barely above his lowest limit for sugars this evening. His GI system is also very upset by it all and he's having diapers multiple times an hr which is making it even harder to keep up with his sugars and hydration. His doctor has been amazing today at calling me frequently to keep up with everything going on.
This afternoon Eli had an appt with his neurologist. We discussed the grand mal seizure and Eli's neurological state in general. He believes we will see even more seizure activity with each illness and that there aren't medication options to keep that from occurring. He also discussed Eli's therapies and where he was with his growth and advancement. He informed me that he thinks with Eli's "severe neurological and cognitive delays and impairments that we will need to make a choice at some point if we continue aggressive therapy." He doesn't believe that Eli will learn these skills and he says by the age of 3 or 4 we will definitely need to be ready to stop intensive therapy and pushing. I was very offended by all of this and will be requesting a new neurologist. I don't think there is ever a point to stop providing therapy and a chance for him to learn. It's not a medication with tons of horrible side effects. It's simply therapy. I don't see what it can do to harm him, only help him.
Lastly Eli saw his optometrist. Eli's eyes have had a slight improvement with consistent use of his glasses. We discussed the irritation Eli is having with the patch so he has decided for now to hold off on using the patch and to continue with using his glasses during all the waking hrs.
Right now we are doing everything we can to try to keep Eli as stable as possible. We are working round the clock to keep his respiration and heart rate down, his O2 up, and his sugars up. He has lost 1 1/2 lbs in the last 2 weeks and is constantly bordering on dehydration. The doctors have no idea why this is all happening or what to do about it all.
In other kids news.
They all had doc appts this week.
Emily ~ She's up to 5ft 3 in. The doc ran some lab work to check on some issues she had been having and the tests all came back OK on that. They are going to watch for 2 months and check back in. They also did some lung function tests. The first go around showed some issues, but after the breathing treatment she did much better on the 2nd go around. They are changing around some of her meds and hoping to get her at a better point with her asthma. She also showed some struggles with the vision test so she meets with the optometrist on Friday. We also talked about Emily's sleep walking and they are referring her to sleep clinic for a full evaluation.
Jace ~ He's up to 4ft 6in. The doc said he's looking pretty good. She's happy where he is with all of his stomach meds and is leaving all that to be followed by Jace's GI doc. She didn't currently have any concerns with Jace!
Benjamin ~ He's up to 4ft. The doc looked him over and all looked good till she got to his ears. All she could see in his left ear canal was green. After much work it was determined that Ben had a large green eraser stuffed all the way into his ear canal. She was finally able to remove it and it doesn't appear like any permanent damage has occurred. Other than that Ben looked pretty good as well. He's still definitely under weight but has gained some so we will continue with what we are currently doing.
Ariana ~ She's up to 3ft 8in. She was the roughest appt. First we went over her hand issues and she has been referred to the OT dept. She is also being referred to the speech dept for her trouble with making certain sounds. Then we discussed Ari's urinary issues. The doctor agreed that the cluster peeing and not being able to fully empty her bladder was a concern. She ran some tests (blood and urine). It looks like Ari might have a UTI and that she also has an abnormally high PH level in her urine. The UTI doesn't explain away the other issues as they have been going on for a long time but it is obviously something that needs fixed. She is referring Ari to the renal clinic for a full work up. Ari also failed her vision test and will be seeing the optometrist on Friday with Emily.
Bob and I like always are exhausted. Earlier in the week I cried, really cried for the first time in a long time. Everything just hit me and the emotions were overwhelming. At this point I feel numb. I keep hearing doctors say there is nothing more we can do, it's the mito, etc.... Eli's medical care is at the point of simply waiting for his next crisis. There is no more trying to fix it, very minimal prevention, it's simply waiting and planning for the next crisis. Nobody worries about baseline anymore, we don't shoot for baseline. We just take slightly stable and run with it. Every morning I'm scared to find out what that day will medically bring. I can never quite relax, already ready to jump up when the next beep happens. Every time my phone rings I'm wondering which doctor it is and already getting all the information straight in my mind, knowing exactly what they want to know. I feel like I'm always planning for the next crisis. I can't really blame the doctors because we do it here at home as well. It's always right around the corner. I don't know how much longer my nerves can handle it. We just float thru the middle point planning and organizing and waiting. The waiting is the worst.
Every special time and moment has been taken from us. It's simply going thru the motions for the family. I can't remember the last time we were able to celebrate a holiday. Eli has been sick, and by sick I mean very sick and unstable for each and everyone. This last monday was Bob and I's first anniversary. It was a horrible day. Our nurse called in, Eli was very sick, and the day was a mess. All I could think about is how I felt as though every special moment had been stolen from us. It's very depressing and hard to stay positive.
Most days are simply going thru the motions of it all. Numb is where I try to remain, but that being said real emotions sneak in there sometimes no matter how hard I try to hold them off.
I apologize to all those I'm ignoring right now. I'm not purposefully doing it, well mostly not. I'm depressed and tired and exhausted and honestly grumpy. I feel horrible putting that burden on my friends. I know most all of you are going thru so many of the same things, and I'm assuming many of the same emotions. I don't want to drag my medical friends deeper down into their own struggles and battles....and for my non medical friends...I know you don't understand and that's ok. You ask how Eli is, not really wanting to know the answer. Eli scares you and I get that. Eli scares me sometimes too. I want to talk to you about non-medical stuff, I want to know about your life, I want to talk about the latest gossip, but for some reason everyone seems scared to talk about those things with me. I NEED those conversations. I need life outside of this medical vortex.
I know I'm being a horrible friend to all of you out there and I want to change it I really do, but I'm so exhausted and blah...It's just not easy. It's never easy anymore.
I guess enough rambling for today. Congrats if you made it all the way thru all of that! :)
I guess what I was trying to get at is be a pain, reach out to me, bug the heck out of me, show up at my house unannounced to chat or drag me out to a movie. Call me and complain about your boss, or you kids, or your childs doctor. Don't be afraid to reach out, it's ok.
love to all.
Then to top it off Eli had a rough week. He started with alot of respiratory issues and needing alot of extra breathing treatments and CPT to get thru it all. Then the fevers started. Then for a day or two he almost seemed like he was getting better.
Then this morning his sugars started dumping fast and we kept doing his emergency meds and they just kept dropping. They ended up dropping over 30points in 40 minutes. We spent a whole lot of time on the phone with his doctor getting orders and constantly adjusting the care plan. Eli has been on continuous feeds and has ended up needing 6 rounds of emergency treatments and he's still barely above his lowest limit for sugars this evening. His GI system is also very upset by it all and he's having diapers multiple times an hr which is making it even harder to keep up with his sugars and hydration. His doctor has been amazing today at calling me frequently to keep up with everything going on.
This afternoon Eli had an appt with his neurologist. We discussed the grand mal seizure and Eli's neurological state in general. He believes we will see even more seizure activity with each illness and that there aren't medication options to keep that from occurring. He also discussed Eli's therapies and where he was with his growth and advancement. He informed me that he thinks with Eli's "severe neurological and cognitive delays and impairments that we will need to make a choice at some point if we continue aggressive therapy." He doesn't believe that Eli will learn these skills and he says by the age of 3 or 4 we will definitely need to be ready to stop intensive therapy and pushing. I was very offended by all of this and will be requesting a new neurologist. I don't think there is ever a point to stop providing therapy and a chance for him to learn. It's not a medication with tons of horrible side effects. It's simply therapy. I don't see what it can do to harm him, only help him.
Lastly Eli saw his optometrist. Eli's eyes have had a slight improvement with consistent use of his glasses. We discussed the irritation Eli is having with the patch so he has decided for now to hold off on using the patch and to continue with using his glasses during all the waking hrs.
Right now we are doing everything we can to try to keep Eli as stable as possible. We are working round the clock to keep his respiration and heart rate down, his O2 up, and his sugars up. He has lost 1 1/2 lbs in the last 2 weeks and is constantly bordering on dehydration. The doctors have no idea why this is all happening or what to do about it all.
In other kids news.
They all had doc appts this week.
Emily ~ She's up to 5ft 3 in. The doc ran some lab work to check on some issues she had been having and the tests all came back OK on that. They are going to watch for 2 months and check back in. They also did some lung function tests. The first go around showed some issues, but after the breathing treatment she did much better on the 2nd go around. They are changing around some of her meds and hoping to get her at a better point with her asthma. She also showed some struggles with the vision test so she meets with the optometrist on Friday. We also talked about Emily's sleep walking and they are referring her to sleep clinic for a full evaluation.
Jace ~ He's up to 4ft 6in. The doc said he's looking pretty good. She's happy where he is with all of his stomach meds and is leaving all that to be followed by Jace's GI doc. She didn't currently have any concerns with Jace!
Benjamin ~ He's up to 4ft. The doc looked him over and all looked good till she got to his ears. All she could see in his left ear canal was green. After much work it was determined that Ben had a large green eraser stuffed all the way into his ear canal. She was finally able to remove it and it doesn't appear like any permanent damage has occurred. Other than that Ben looked pretty good as well. He's still definitely under weight but has gained some so we will continue with what we are currently doing.
Ariana ~ She's up to 3ft 8in. She was the roughest appt. First we went over her hand issues and she has been referred to the OT dept. She is also being referred to the speech dept for her trouble with making certain sounds. Then we discussed Ari's urinary issues. The doctor agreed that the cluster peeing and not being able to fully empty her bladder was a concern. She ran some tests (blood and urine). It looks like Ari might have a UTI and that she also has an abnormally high PH level in her urine. The UTI doesn't explain away the other issues as they have been going on for a long time but it is obviously something that needs fixed. She is referring Ari to the renal clinic for a full work up. Ari also failed her vision test and will be seeing the optometrist on Friday with Emily.
Bob and I like always are exhausted. Earlier in the week I cried, really cried for the first time in a long time. Everything just hit me and the emotions were overwhelming. At this point I feel numb. I keep hearing doctors say there is nothing more we can do, it's the mito, etc.... Eli's medical care is at the point of simply waiting for his next crisis. There is no more trying to fix it, very minimal prevention, it's simply waiting and planning for the next crisis. Nobody worries about baseline anymore, we don't shoot for baseline. We just take slightly stable and run with it. Every morning I'm scared to find out what that day will medically bring. I can never quite relax, already ready to jump up when the next beep happens. Every time my phone rings I'm wondering which doctor it is and already getting all the information straight in my mind, knowing exactly what they want to know. I feel like I'm always planning for the next crisis. I can't really blame the doctors because we do it here at home as well. It's always right around the corner. I don't know how much longer my nerves can handle it. We just float thru the middle point planning and organizing and waiting. The waiting is the worst.
Every special time and moment has been taken from us. It's simply going thru the motions for the family. I can't remember the last time we were able to celebrate a holiday. Eli has been sick, and by sick I mean very sick and unstable for each and everyone. This last monday was Bob and I's first anniversary. It was a horrible day. Our nurse called in, Eli was very sick, and the day was a mess. All I could think about is how I felt as though every special moment had been stolen from us. It's very depressing and hard to stay positive.
Most days are simply going thru the motions of it all. Numb is where I try to remain, but that being said real emotions sneak in there sometimes no matter how hard I try to hold them off.
I apologize to all those I'm ignoring right now. I'm not purposefully doing it, well mostly not. I'm depressed and tired and exhausted and honestly grumpy. I feel horrible putting that burden on my friends. I know most all of you are going thru so many of the same things, and I'm assuming many of the same emotions. I don't want to drag my medical friends deeper down into their own struggles and battles....and for my non medical friends...I know you don't understand and that's ok. You ask how Eli is, not really wanting to know the answer. Eli scares you and I get that. Eli scares me sometimes too. I want to talk to you about non-medical stuff, I want to know about your life, I want to talk about the latest gossip, but for some reason everyone seems scared to talk about those things with me. I NEED those conversations. I need life outside of this medical vortex.
I know I'm being a horrible friend to all of you out there and I want to change it I really do, but I'm so exhausted and blah...It's just not easy. It's never easy anymore.
I guess enough rambling for today. Congrats if you made it all the way thru all of that! :)
I guess what I was trying to get at is be a pain, reach out to me, bug the heck out of me, show up at my house unannounced to chat or drag me out to a movie. Call me and complain about your boss, or you kids, or your childs doctor. Don't be afraid to reach out, it's ok.
love to all.
Thursday, January 12, 2012
Geneticist / Mito Doc
We met with Eli's geneticist and Mito doc today. We spent a little over 2 hrs there.
1. Blood Sugars. He agrees that this is a huge issue that needs to be immediately gotten under control. He agrees that we need to try one more option before our final 2 options. Right now we are going to try water and cornstarch. He's hoping that it will be enough to help increase his sugars enough to protect from these big hypoglycemic drops. If this doesn't work we are left with 2 options. If this doesn't work we will discuss Glucagon injections, and if that doesn't work we will be discussing (AGAIN) permanent access to allow for Iv fluids to help keep everything up.
2. Next we discussed Eli's growth and weight. He knows that Eli is in on the technical highest dose of HGH BUT we CAN go up if we need to. Currently Eli is back on a downward spiral on his weight and his still struggling to stay hydrated. He's not sure why this is happening as he is technically getting way more than what he needs in calories, fluids, and everything else. He ran some lab tests today and is going to go over everything with a fine tooth comb and see if he can come up with a better feed/fluid schedule. Again this could end up with permanent access that could allow for some IV fluids and TPN as needed.
3. We then discussed Eli's secretions and his sleep apnea. He is concerned about the size of Eli's nasal passages...this is something that has been a concern since birth. It was always assumed that they would grow and adjust. That's not happened. We can barely get a 5Fr down one side and a 6Fr down the other. He has put in a referral for plastic surgery and ENT to see about dilating the nasal passages.
4. We discussed Eli's seizures. He's not surprised that we are seeing an increase and a change in those. He warned us that the brain is a weaker point in Mito kiddos like Eli and that Eli is very susceptible to seizures and such, especially when he's body is under any kind of stress. He is in favor of Eli's seizure care being switched over to the epileptologist instead of just the neurologist, and he really likes the one that Eli has already seen.
5. There was also some discussions on a brand new clinical lab that will be opening here in KC in the next 2 or 3 months. They are almost finished with the research labs. They are testing Mitochondria fully for mutations and deletions and such. He has had 1 patient go thru the research piece and they were able to get the last piece of the puzzle and he strongly encourages us to finish this testing with Eli as well. We will go ahead with it, although we don't know how many more diagnosis' we can handle.
6. Lastly we discussed Eli's critical care plans. I voiced my concerns over doctors giving up because of the Mito diagnosis. He discussed end of life, terminal care, and agrees that we aren't at that point and at this point it simply isn't fair to deny Eli ANY medical helps that can possibly help him medically and quality of life wise. He did forewarn that there will come a point where we will need to start questioning EVERY single intervention and picking what is truly "worth" doing, but he strongly believes that we aren't there yet. This was an awkward conversation to have. We know the in's and out's of Mito. We know the statistics. We know what can/will/could happen. These are obviously things that Bob and I have discussed quietly...privately. That being said when a doctor openly discusses these things it's scary and comforting all at the same time. He is going to put together a FULL critical care plan so there shouldn't be as much question as to what we need to do in situations where Eli is struggling.
He mentioned to me that it is hard to expect 1 doctor to know everything about a child as complex as Eli. I told him I understand that, and that Eli has 36 doctors, and I looked him right in the eyes and said..."In the same turn it is hard to expect 2 parents with NO medical training to know everything about what to do." He looked right at me, and quietly responded "We can't be putting this on you, we will get it done." I sure hope he's right. Bob and I can't continue to guess and struggle thru each and every day, it's not fair to Eli. On a slightly funny side note, his geneticist/Mito doctor informed me with a small laugh, that he can see why some are afraid of Eli's complexities, he said that honestly he is too! :)
He has decided to follow Eli every 3 months. He says he normally follows his patients yearly when they are stable, but believes that every 3 months is best for Eli. We tend to agree.
Eli had a rough day with the temps and being out and about. He couldn't handle sitting up in his wheelchair that long and got very tired and droopy. The afternoon brought a lot of napping, and this evening a lot of laying around. Tomorrow is a slow day at home, which will help him catch up a touch.
Monday brings his new cough assist and all of the training involved with that. Next week also brings a recheck with his eye doctor and his neurologist.
I will get another update up in the next few days. Maybe I can even get organized and get some pictures up too! :)
1. Blood Sugars. He agrees that this is a huge issue that needs to be immediately gotten under control. He agrees that we need to try one more option before our final 2 options. Right now we are going to try water and cornstarch. He's hoping that it will be enough to help increase his sugars enough to protect from these big hypoglycemic drops. If this doesn't work we are left with 2 options. If this doesn't work we will discuss Glucagon injections, and if that doesn't work we will be discussing (AGAIN) permanent access to allow for Iv fluids to help keep everything up.
2. Next we discussed Eli's growth and weight. He knows that Eli is in on the technical highest dose of HGH BUT we CAN go up if we need to. Currently Eli is back on a downward spiral on his weight and his still struggling to stay hydrated. He's not sure why this is happening as he is technically getting way more than what he needs in calories, fluids, and everything else. He ran some lab tests today and is going to go over everything with a fine tooth comb and see if he can come up with a better feed/fluid schedule. Again this could end up with permanent access that could allow for some IV fluids and TPN as needed.
3. We then discussed Eli's secretions and his sleep apnea. He is concerned about the size of Eli's nasal passages...this is something that has been a concern since birth. It was always assumed that they would grow and adjust. That's not happened. We can barely get a 5Fr down one side and a 6Fr down the other. He has put in a referral for plastic surgery and ENT to see about dilating the nasal passages.
4. We discussed Eli's seizures. He's not surprised that we are seeing an increase and a change in those. He warned us that the brain is a weaker point in Mito kiddos like Eli and that Eli is very susceptible to seizures and such, especially when he's body is under any kind of stress. He is in favor of Eli's seizure care being switched over to the epileptologist instead of just the neurologist, and he really likes the one that Eli has already seen.
5. There was also some discussions on a brand new clinical lab that will be opening here in KC in the next 2 or 3 months. They are almost finished with the research labs. They are testing Mitochondria fully for mutations and deletions and such. He has had 1 patient go thru the research piece and they were able to get the last piece of the puzzle and he strongly encourages us to finish this testing with Eli as well. We will go ahead with it, although we don't know how many more diagnosis' we can handle.
6. Lastly we discussed Eli's critical care plans. I voiced my concerns over doctors giving up because of the Mito diagnosis. He discussed end of life, terminal care, and agrees that we aren't at that point and at this point it simply isn't fair to deny Eli ANY medical helps that can possibly help him medically and quality of life wise. He did forewarn that there will come a point where we will need to start questioning EVERY single intervention and picking what is truly "worth" doing, but he strongly believes that we aren't there yet. This was an awkward conversation to have. We know the in's and out's of Mito. We know the statistics. We know what can/will/could happen. These are obviously things that Bob and I have discussed quietly...privately. That being said when a doctor openly discusses these things it's scary and comforting all at the same time. He is going to put together a FULL critical care plan so there shouldn't be as much question as to what we need to do in situations where Eli is struggling.
He mentioned to me that it is hard to expect 1 doctor to know everything about a child as complex as Eli. I told him I understand that, and that Eli has 36 doctors, and I looked him right in the eyes and said..."In the same turn it is hard to expect 2 parents with NO medical training to know everything about what to do." He looked right at me, and quietly responded "We can't be putting this on you, we will get it done." I sure hope he's right. Bob and I can't continue to guess and struggle thru each and every day, it's not fair to Eli. On a slightly funny side note, his geneticist/Mito doctor informed me with a small laugh, that he can see why some are afraid of Eli's complexities, he said that honestly he is too! :)
He has decided to follow Eli every 3 months. He says he normally follows his patients yearly when they are stable, but believes that every 3 months is best for Eli. We tend to agree.
Eli had a rough day with the temps and being out and about. He couldn't handle sitting up in his wheelchair that long and got very tired and droopy. The afternoon brought a lot of napping, and this evening a lot of laying around. Tomorrow is a slow day at home, which will help him catch up a touch.
Monday brings his new cough assist and all of the training involved with that. Next week also brings a recheck with his eye doctor and his neurologist.
I will get another update up in the next few days. Maybe I can even get organized and get some pictures up too! :)
Wednesday, January 11, 2012
Wow I'm behind
Holy cow I didn't realize it had been so long since I had updated. It's been just one huge blur, which seems to be the story of my life lately.
Eli has been home from the hospital for a week now. We pushed and he was able to come home because we have such a medical setup here and he has nursing. He did decent after getting home, although he struggled alot with his blood sugar.
We met with Eli's new medically complex doctor 48hrs after he was discharged. They ended up needin to change all of his feeds and his fluids. His blood sugars are dropping quickly while he's off feeds, and he is still running dehydrated. So he is now on more calories and carbs, and his water has been increased. He also is not getting as much time off the pump. He gets 2 hrs in the morning and he's done decent with maintaining his blood sugar. He also gets 2 1/2 hrs at night and he is doing horrible keeping his sugars up. He has yet to actually get that whole time off the pump. We have had to put his emergency sugars plan into effect every night. We are also still seeing many signs of being a bit "dry" and are working to combat that.
He has had some wheezing issues again as well and had to go back to his complex doc. He made a bit better management plan and has also decided that we are going to ultimately need to provide Eli more support to help him conserve energy and properly handle clearing secretions so they don't settle into his lungs. He has decided to increase Eli's rescue nebulizer treatments, as well as his CPT and he has also placed an order for Eli to have a Cough Assist machine. Hopefully if we can help Eli cough and clear everything a bit better on his own, we can provide a bit of extra protection for his lungs.
Eli is still struggling with not being on O2. We had a day or 2 where he did well, and then right back to it. We are seeing his O2 sats drop and his heartrate and resps shoot right back up the moment he takes his O2 off.
We have also learned this week that Eli's endocrinologist is no longer able to manage Eli's care when it comes to his hypoglycemia. He believes it is related to the Mito and is unsure what needs to be done to help stabilize it all. He is referring Eli back to his geneticist/Mito doctor to deal with all of it.
Eli also had another nurse quit this week. Eli was yet again to complicated. We are unsure of how to prevent this from occurring so frequently. We are 110% upfront and honest with the nurses when they interview. We go over every drop of his medical care. They are again looking for a new nurse to help cover 40hrs a week. We are changing around some of the requirements, and hoping that helps weed out some of the problems a bit earlier on in the process.
Eli meets with his geneticist tomorrow. They were able to get him a rush appt. He will meet with his eye doctor and his neurologist next week as well. We are working to get back to a new "baseline" and to figure out where we go from here.
With each illness we are learning new things about Eli, and learning of new problems. We have definitely learned that Eli's lungs are by far his weakest point, and for Eli they seem to be the hardest thing to heal. Each illness is placing a stronger and stronger hold on his lungs and we are struggling to get back to stable, let alone baseline.
We have already informed Eli's new complex doctor that in a few weeks we would like to have a very serious sit down talk and discuss where we are, where we go from here, what we start, what we stop, what we change. We feel so many times that Eli's doctors all tip-toe around alot of subjects that we all know are right there needing discussed. We are hoping that his new primary doctor will be able to openly honestly handle these types of discussions.
Where the rest of us are...
Bob and I are exhausted. Currently Eli only has 36 if his 84 hrs a week covered. This means that Bob and I are 100% in charge of his care 132 hrs a week. It's exhausting and Eli is continuing to be more and more work each day. We are constantly reassessing and making changes. It's a games of numbers and we are always re-figuring and just trying to keep up.
Emily ~ She's busy as always with school. She is involved in her 2nd book club of the year, still in choir and strings and student counsel as well. To top it all off she has decided to audition for the school talent show and is working on picking the perfect song! She's hitting the age where she is becoming boy crazed and that's always fun for Bob and I to hear all about!
Jace ~ He's doing pretty well with school. He made some advancements on his last report card as well on his IEP speech goals. Some things are still proving to be quite the challenge. Assessments are coming up and this will be the first time that his IEP accommodation will be in place. We are really hoping that will help Jace out and allow him to feel more comfortable witht he testing. He's still enjoying school and making new friends. He won an award this month with this school and we were all super excited about that!
Benjamin ~ He's doing decent in school. Like always still struggling on many things. He has moved into the class clown role as he's learned that he can make his classmates laugh and he enjoys that interaction. That combined with his constant moving and spinning and pacing has gotten him in trouble multiple times lately. He's still getting all of his IEP accommodation and is making VERY slow progress towards reaching his goals. At home he still stays super busy on his kindle fire or the nintendo or Wii.
Ariana ~ She's turning into such a stubborn little lady. She's girly as could be but beyond rough and tough. Just last week she used Emily's razor to "practice" shaving like Emily and Bob. She shaved all of the skin right off her chin. Then 2 days later she got a huge splinter in the palm of her hand. She makes it thru all of these events with virtually no tears and her hair perfectly in pig tails or braids. It's interesting to watch. She is loving school and doing well. She has learned almost all of her ABC's and now knows her numbers up to 13! She knows all of her shapes and colors!
I think that sums us all up for now. I will get on tomorrow after the geneticist and update. By that point I should hopefully have some more detailed information on where we go for here.
We are frequently asked for specific things that people can send thoughts or prayers for...
1. For Eli. He is my little fighter and I'm constantly amazed by his strength. That being said his lungs are really slowing him down. He's struggling with keeping up with what he wants to do and it's really interfering with his desire to play. He ends up needing to take frequent breaks and have others help him do some of the things he would normally on his own. He so badly wants to be a normal 2 yr old and play and his lungs are making that impossible.
2. For Eli's doctors and nurses. We are losing so many people to the complexities of our little man. We need a strong team that is as strong a fighter as our little man. We need them to be able to make good decisions that balance Eli body AND Eli's quality of life. We also need them to communicate with us openly and honestly and clearly.
3. For us. Bob and I struggle each day to just get thru it. We are lonely, so lonely. We feel isolated and honestly very depressed quite often. It is such a struggle caring for a little one like Eli. It is literally taking EVERYTHING that we have. It is also tough for the oldest 4. They understand only pieces of it, and it can be scary for them. They do such an amazing job staying strong for our little man and they shower him with so much love it's overwhelming to watch. Their connection with him is intense.
4. Lastly and VERY importantly we ask for thoughts and prayers for all of the other families out there. I know that you are here reading our journey BUT please never forget that there are families on similar journeys. There are other little warriors out there fighting thru each and every day. There are other exhausted parents out there fighting for what is best for their kiddos, fighting to make it thru each day. Please please please never forget that there is a whole community of us, a whole community fighting thru each and every day, leaning on each other, sticking together as one big unconventional family held together by this horrible disease of Mito.
Eli has been home from the hospital for a week now. We pushed and he was able to come home because we have such a medical setup here and he has nursing. He did decent after getting home, although he struggled alot with his blood sugar.
We met with Eli's new medically complex doctor 48hrs after he was discharged. They ended up needin to change all of his feeds and his fluids. His blood sugars are dropping quickly while he's off feeds, and he is still running dehydrated. So he is now on more calories and carbs, and his water has been increased. He also is not getting as much time off the pump. He gets 2 hrs in the morning and he's done decent with maintaining his blood sugar. He also gets 2 1/2 hrs at night and he is doing horrible keeping his sugars up. He has yet to actually get that whole time off the pump. We have had to put his emergency sugars plan into effect every night. We are also still seeing many signs of being a bit "dry" and are working to combat that.
He has had some wheezing issues again as well and had to go back to his complex doc. He made a bit better management plan and has also decided that we are going to ultimately need to provide Eli more support to help him conserve energy and properly handle clearing secretions so they don't settle into his lungs. He has decided to increase Eli's rescue nebulizer treatments, as well as his CPT and he has also placed an order for Eli to have a Cough Assist machine. Hopefully if we can help Eli cough and clear everything a bit better on his own, we can provide a bit of extra protection for his lungs.
Eli is still struggling with not being on O2. We had a day or 2 where he did well, and then right back to it. We are seeing his O2 sats drop and his heartrate and resps shoot right back up the moment he takes his O2 off.
We have also learned this week that Eli's endocrinologist is no longer able to manage Eli's care when it comes to his hypoglycemia. He believes it is related to the Mito and is unsure what needs to be done to help stabilize it all. He is referring Eli back to his geneticist/Mito doctor to deal with all of it.
Eli also had another nurse quit this week. Eli was yet again to complicated. We are unsure of how to prevent this from occurring so frequently. We are 110% upfront and honest with the nurses when they interview. We go over every drop of his medical care. They are again looking for a new nurse to help cover 40hrs a week. We are changing around some of the requirements, and hoping that helps weed out some of the problems a bit earlier on in the process.
Eli meets with his geneticist tomorrow. They were able to get him a rush appt. He will meet with his eye doctor and his neurologist next week as well. We are working to get back to a new "baseline" and to figure out where we go from here.
With each illness we are learning new things about Eli, and learning of new problems. We have definitely learned that Eli's lungs are by far his weakest point, and for Eli they seem to be the hardest thing to heal. Each illness is placing a stronger and stronger hold on his lungs and we are struggling to get back to stable, let alone baseline.
We have already informed Eli's new complex doctor that in a few weeks we would like to have a very serious sit down talk and discuss where we are, where we go from here, what we start, what we stop, what we change. We feel so many times that Eli's doctors all tip-toe around alot of subjects that we all know are right there needing discussed. We are hoping that his new primary doctor will be able to openly honestly handle these types of discussions.
Where the rest of us are...
Bob and I are exhausted. Currently Eli only has 36 if his 84 hrs a week covered. This means that Bob and I are 100% in charge of his care 132 hrs a week. It's exhausting and Eli is continuing to be more and more work each day. We are constantly reassessing and making changes. It's a games of numbers and we are always re-figuring and just trying to keep up.
Emily ~ She's busy as always with school. She is involved in her 2nd book club of the year, still in choir and strings and student counsel as well. To top it all off she has decided to audition for the school talent show and is working on picking the perfect song! She's hitting the age where she is becoming boy crazed and that's always fun for Bob and I to hear all about!
Jace ~ He's doing pretty well with school. He made some advancements on his last report card as well on his IEP speech goals. Some things are still proving to be quite the challenge. Assessments are coming up and this will be the first time that his IEP accommodation will be in place. We are really hoping that will help Jace out and allow him to feel more comfortable witht he testing. He's still enjoying school and making new friends. He won an award this month with this school and we were all super excited about that!
Benjamin ~ He's doing decent in school. Like always still struggling on many things. He has moved into the class clown role as he's learned that he can make his classmates laugh and he enjoys that interaction. That combined with his constant moving and spinning and pacing has gotten him in trouble multiple times lately. He's still getting all of his IEP accommodation and is making VERY slow progress towards reaching his goals. At home he still stays super busy on his kindle fire or the nintendo or Wii.
Ariana ~ She's turning into such a stubborn little lady. She's girly as could be but beyond rough and tough. Just last week she used Emily's razor to "practice" shaving like Emily and Bob. She shaved all of the skin right off her chin. Then 2 days later she got a huge splinter in the palm of her hand. She makes it thru all of these events with virtually no tears and her hair perfectly in pig tails or braids. It's interesting to watch. She is loving school and doing well. She has learned almost all of her ABC's and now knows her numbers up to 13! She knows all of her shapes and colors!
I think that sums us all up for now. I will get on tomorrow after the geneticist and update. By that point I should hopefully have some more detailed information on where we go for here.
We are frequently asked for specific things that people can send thoughts or prayers for...
1. For Eli. He is my little fighter and I'm constantly amazed by his strength. That being said his lungs are really slowing him down. He's struggling with keeping up with what he wants to do and it's really interfering with his desire to play. He ends up needing to take frequent breaks and have others help him do some of the things he would normally on his own. He so badly wants to be a normal 2 yr old and play and his lungs are making that impossible.
2. For Eli's doctors and nurses. We are losing so many people to the complexities of our little man. We need a strong team that is as strong a fighter as our little man. We need them to be able to make good decisions that balance Eli body AND Eli's quality of life. We also need them to communicate with us openly and honestly and clearly.
3. For us. Bob and I struggle each day to just get thru it. We are lonely, so lonely. We feel isolated and honestly very depressed quite often. It is such a struggle caring for a little one like Eli. It is literally taking EVERYTHING that we have. It is also tough for the oldest 4. They understand only pieces of it, and it can be scary for them. They do such an amazing job staying strong for our little man and they shower him with so much love it's overwhelming to watch. Their connection with him is intense.
4. Lastly and VERY importantly we ask for thoughts and prayers for all of the other families out there. I know that you are here reading our journey BUT please never forget that there are families on similar journeys. There are other little warriors out there fighting thru each and every day. There are other exhausted parents out there fighting for what is best for their kiddos, fighting to make it thru each day. Please please please never forget that there is a whole community of us, a whole community fighting thru each and every day, leaning on each other, sticking together as one big unconventional family held together by this horrible disease of Mito.
Sunday, January 1, 2012
New Years Day Updates
Sorry we are so behind on updates here. Alot has happened over these last few days and Bob and I have had to process it all.
When we got to the ER monday, Eli was started choking at the triage desk. I asked for suction and they couldn't find it. So they decided to have a CNA rush us back to a room. 3 steps down the hall is when the bleeding started. She took us to the room and stood there frozen. I kept yelling at her to get me suction and a doctor. At this point Eli was choking and changing colors and blood was pouring out of his nose, mouth, and stomach. Bob and I had 1 blanket and a bulb syringe. A RN heard me yelling for help and came running in, while the CNA still stood frozen. They grabbed everything up and ran us down to the Trauma rooms. So this was issue Number 1.
Then I kept telling them they had to get D10 running because Eli wouldn't maintain his sugars for very long on his own, especially when he's sick. Doc put in orders. We were transferred from the ER upstairs to his room. I kept pushing for D10 and sugar checks. Eli started getting really shaky. I again demanded D10 and a sugar check. The care assistant said he'd never done a sugar check and stuck Eli with the big heel stick razors. Eli's sugar was 56. Finally the nurse brought D10 but it was to late. 2 minutes later Eli had a grand mal seizure. Bob yelled into the hall for help and a nurse walking by stood in the hall watching and said holy cow he's lifting off the bed. She didn't come help and ran to get a doc. The floor nurses kept saying we aren't a diabetic floor we don't know what to do. Eli was given no meds to raise his sugar. He laid there after the seizure shaking uncontrollably. Issue Number 2.
So then we had to get all of his orders fixed. It was a mess. His meds were all wrong, his feeds and fluids were jacked. The nurses had no idea what they were doing because it wasn't a neuro floor or a diabetic floor. (dumb asses it's a children's hospital you should know what you are doing.)
The residents kept screwing up his orders and his labs. When we had the CT the resident originally told me that he had some pneumonia in the right lung. Then when we got transferred to PICU we were shown the CT and talked to about it and both of Eli's lungs were full of pneumonia and there was collapse in both lungs, and the right lung had significant collapsing.
Also orders were placed for Eli to be getting his cough assist Q4, IPPB Q6, and his hypertonic saline Q8. Apparently these weren't all getting done. The RT was coming in during the night and if he was sleeping she was chosing not to do it. We ended up in the PICU because of this. He was getting so sick and so they weren't sure what was going on and decided he needed PICU. We got down there and they wanted to simply follow the orders for a few and see how he did. He immediately started improving. So he simply needed the floor orders followed, and didn't need any additional supports.
When it was time to go back out to the floor I refused the same floor we had been on. So we were sent to a new floor. As soon we got here the charge nurse called the floor supervisor complaining that they couldn't deal with this many complex kids. I was like WOW really. So then get settled and basically closed ourselves in our room.
Then we lost Eli's midline. The line they swore would last 2 weeks didn't even make it 2 full days. Not only did we lose it but Eli had streaking all the way up his leg and a large red hard spot on his groin. They were unsure if it was a clot or infection. Finally got that all fixed.
Then they couldn't draw lovenox levels. They had trouble drawing so the nurse just gave up. So we were on lovenox for days with no levels drawn. We were struggling to get any blood out of him at all and couldn't even get finger sticks. So they DC'd the lovenox finally.
Then Eli kept swelling and having weird pee issues and nobody could figure out why. Yesterday the nurse and I were trying to trouble shoot it. Come to find out they had screwed up his formula orders. They were mixing all of his formula with 28oz of pedialyte instead of water. Nobody knows why this was happening. But pedialyte and Eli don't mix. Mind you I had told them exactly what he needs for formula as well as written it all down for them 16 times by this point. Then as we were going thru the computer and every single order we found another MAJOR issue. They had been giving Eli the wrong medication. He is supposed to have 1/8 tsp of salt mixed into his days worth of formula. The resident was confused an ordered sodium chloride in a 20 ml syringe. They were giving him the whole thing. So he was getting like 10 times the sodium his little body needs. That kicked everyone into high gear. He had to have multiple sticks and alot of labs all run stat. His sodium levels weren't to the danger high but well on there was and WAY higher than when we got to the hospital.
By this point I was ready to explode. The attending were here, the hospital supervisor, charge nurses, everyone. There was a long talk over all of the mistakes that have happened since we arrived here. They admitted that they had messed up ALOT and that they had in fact made Eli sicker with some of the mistakes. I told them I didn't trust a single person here and that I was so scared that they were going to kill my child.
We spent hrs going thru every single med, formula, treatment, etc. Now the nurses are required to let me look at every med label, every formula bottle, every order in the computer, all of his MARS, etc. The residents are no longer able to change any orders and everything has to go thru me and the attending.
It's very scary. At the time we didn't know all these things were happening. It was alot of new meds and treatments and we didn't understand all of it and didn't realize that it wasn't all being done.
So currently Eli is improving, slowly. I'm spending every waking second monitoring him and all of the nurses and RT's and such. They docs are being incredibly cautious. I have been apologized to so many times I'm just going to scream if 1 more person says I'm sorry. I don't want an I'm sorry I want them to fix it.
Eli is awake more. He's still not able to sit up on his own but has been able to prop up in a tumbleform chair a few times. They have brought him a table to put in bed with him so that he can watch his Ipad and some of his Signing Times movies. He's still requiring O2 and we know immediately if he pulls his nasal canulas because he immediately drops his sats to the high 70's and low 80's. He's now getting IPPB and hypertonic saline every 6 hrs and these really seem to help him. We are on J feeds and he's tolerating them really well so far. The antibiotics are really starting to cause some issues but we are hoping to be able to keep up with that without having to get another line placed. They are holding all salts while his sodium levels try and resituate by themselves.
Bob and I are exhausted. All of the things that we have found out over the last 24 to 48 hrs have really caused us alot of concern and we needed time to absorb it all and sort it all out and to figure out where to go from there. Tomorrow we will be meeting with a special patient advocate team to file formal complaints and investigations into all of it. The doctors have already filed all of that on their end, but now we have to on our end as well.
I promise to keep up better with udpates at this point! Thank you!!
When we got to the ER monday, Eli was started choking at the triage desk. I asked for suction and they couldn't find it. So they decided to have a CNA rush us back to a room. 3 steps down the hall is when the bleeding started. She took us to the room and stood there frozen. I kept yelling at her to get me suction and a doctor. At this point Eli was choking and changing colors and blood was pouring out of his nose, mouth, and stomach. Bob and I had 1 blanket and a bulb syringe. A RN heard me yelling for help and came running in, while the CNA still stood frozen. They grabbed everything up and ran us down to the Trauma rooms. So this was issue Number 1.
Then I kept telling them they had to get D10 running because Eli wouldn't maintain his sugars for very long on his own, especially when he's sick. Doc put in orders. We were transferred from the ER upstairs to his room. I kept pushing for D10 and sugar checks. Eli started getting really shaky. I again demanded D10 and a sugar check. The care assistant said he'd never done a sugar check and stuck Eli with the big heel stick razors. Eli's sugar was 56. Finally the nurse brought D10 but it was to late. 2 minutes later Eli had a grand mal seizure. Bob yelled into the hall for help and a nurse walking by stood in the hall watching and said holy cow he's lifting off the bed. She didn't come help and ran to get a doc. The floor nurses kept saying we aren't a diabetic floor we don't know what to do. Eli was given no meds to raise his sugar. He laid there after the seizure shaking uncontrollably. Issue Number 2.
So then we had to get all of his orders fixed. It was a mess. His meds were all wrong, his feeds and fluids were jacked. The nurses had no idea what they were doing because it wasn't a neuro floor or a diabetic floor. (dumb asses it's a children's hospital you should know what you are doing.)
The residents kept screwing up his orders and his labs. When we had the CT the resident originally told me that he had some pneumonia in the right lung. Then when we got transferred to PICU we were shown the CT and talked to about it and both of Eli's lungs were full of pneumonia and there was collapse in both lungs, and the right lung had significant collapsing.
Also orders were placed for Eli to be getting his cough assist Q4, IPPB Q6, and his hypertonic saline Q8. Apparently these weren't all getting done. The RT was coming in during the night and if he was sleeping she was chosing not to do it. We ended up in the PICU because of this. He was getting so sick and so they weren't sure what was going on and decided he needed PICU. We got down there and they wanted to simply follow the orders for a few and see how he did. He immediately started improving. So he simply needed the floor orders followed, and didn't need any additional supports.
When it was time to go back out to the floor I refused the same floor we had been on. So we were sent to a new floor. As soon we got here the charge nurse called the floor supervisor complaining that they couldn't deal with this many complex kids. I was like WOW really. So then get settled and basically closed ourselves in our room.
Then we lost Eli's midline. The line they swore would last 2 weeks didn't even make it 2 full days. Not only did we lose it but Eli had streaking all the way up his leg and a large red hard spot on his groin. They were unsure if it was a clot or infection. Finally got that all fixed.
Then they couldn't draw lovenox levels. They had trouble drawing so the nurse just gave up. So we were on lovenox for days with no levels drawn. We were struggling to get any blood out of him at all and couldn't even get finger sticks. So they DC'd the lovenox finally.
Then Eli kept swelling and having weird pee issues and nobody could figure out why. Yesterday the nurse and I were trying to trouble shoot it. Come to find out they had screwed up his formula orders. They were mixing all of his formula with 28oz of pedialyte instead of water. Nobody knows why this was happening. But pedialyte and Eli don't mix. Mind you I had told them exactly what he needs for formula as well as written it all down for them 16 times by this point. Then as we were going thru the computer and every single order we found another MAJOR issue. They had been giving Eli the wrong medication. He is supposed to have 1/8 tsp of salt mixed into his days worth of formula. The resident was confused an ordered sodium chloride in a 20 ml syringe. They were giving him the whole thing. So he was getting like 10 times the sodium his little body needs. That kicked everyone into high gear. He had to have multiple sticks and alot of labs all run stat. His sodium levels weren't to the danger high but well on there was and WAY higher than when we got to the hospital.
By this point I was ready to explode. The attending were here, the hospital supervisor, charge nurses, everyone. There was a long talk over all of the mistakes that have happened since we arrived here. They admitted that they had messed up ALOT and that they had in fact made Eli sicker with some of the mistakes. I told them I didn't trust a single person here and that I was so scared that they were going to kill my child.
We spent hrs going thru every single med, formula, treatment, etc. Now the nurses are required to let me look at every med label, every formula bottle, every order in the computer, all of his MARS, etc. The residents are no longer able to change any orders and everything has to go thru me and the attending.
It's very scary. At the time we didn't know all these things were happening. It was alot of new meds and treatments and we didn't understand all of it and didn't realize that it wasn't all being done.
So currently Eli is improving, slowly. I'm spending every waking second monitoring him and all of the nurses and RT's and such. They docs are being incredibly cautious. I have been apologized to so many times I'm just going to scream if 1 more person says I'm sorry. I don't want an I'm sorry I want them to fix it.
Eli is awake more. He's still not able to sit up on his own but has been able to prop up in a tumbleform chair a few times. They have brought him a table to put in bed with him so that he can watch his Ipad and some of his Signing Times movies. He's still requiring O2 and we know immediately if he pulls his nasal canulas because he immediately drops his sats to the high 70's and low 80's. He's now getting IPPB and hypertonic saline every 6 hrs and these really seem to help him. We are on J feeds and he's tolerating them really well so far. The antibiotics are really starting to cause some issues but we are hoping to be able to keep up with that without having to get another line placed. They are holding all salts while his sodium levels try and resituate by themselves.
Bob and I are exhausted. All of the things that we have found out over the last 24 to 48 hrs have really caused us alot of concern and we needed time to absorb it all and sort it all out and to figure out where to go from there. Tomorrow we will be meeting with a special patient advocate team to file formal complaints and investigations into all of it. The doctors have already filed all of that on their end, but now we have to on our end as well.
I promise to keep up better with udpates at this point! Thank you!!
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