The debate on CCHS rages on. We just need the results of the gene sequencing to see if this is the definitive diagnosis. In the mean time Eli is still having some problems passing stool. He has been getting some pear juice to help loosen things up a little and now they have him on miralax, a mild laxative, in conjunction with some glycerin suppositories if he hasn't passed anything during a 12 hour period.
Overall, the constipation hasn't seemed to be too much of a problem and it is a known side effect of the iron supplements Eli was taking to help boost his red blood cell production. After the blood transfusion we stopped giving Eli the iron supplements hoping the constipation would lessen but so far we're still fighting the problem.
Unfortunately there is a known link between constipation and CCHS called Hirschsprung's Disease. Hirschsprung's Disease is a condition that affects the large intestine (colon) and causes problems passing stool. It's present when a baby is born (congenital) and results from missing nerve cells in the muscles of a portion of the baby's colon. The problem can be fixed through surgery to remove the diseased portion of the colon. So now we have one more fun thing to think about in terms of Eli's care and another possible bump in the road to overcome. Our first step on this new road is to take an x-ray of Eli's colon to see if there are any complications like loops or thickening of the colon wall that would be visible to the x-ray. Fortunately the x-ray is clean and Eli's colon looks perfect.
As Thursday wraps up we look back at one more inconclusive diagnostic test and the possibility of further complications down the road.
Wednesday, March 31, 2010
Tuesday, March 30, 2010
03/30/10 Great News
The great news today came at Rounds. The genetic test for Menke's Disease was back and it was negative. We've been living with a cloud over our heads for so long it seemed normal but I finally realized what a weight it has been. Thank God this test was negative!
The plan for today includes figuring out how to get the next CCHS test done. The doctors are going to call the lab in Chicago where they did the original CCHS test to find out what we need to do to get the gene sequencing done.
They also want to do an echocardiogram to look at Eli's heart. We've been told that this is a standard workup in a baby that presents with hypotonia so our obvious question is why have we waited until now to do it? Remember all those conversations we've had about being proactive and have we run every test we can to diagnose Eli? Somehow we missed this and it's becoming clear to us that we need to keep pushing every single day to make sure we're getting the best care for Eli.
Patricia was present during the echocardiogram this afternoon and while we don't have the official results she overheard the technician saying everything looked normal. Obviously we need to double check this tomorrow morning to make sure that's the correct result but it made us feel better about Eli's heart.
We also found out that the lab in Chicago would use the blood work they had for Eli's PHOX2B test to do the gene sequencing. That's good news too because it means we don't need to suck anymore blood out of our previously anemic son who has just received donor blood and appears to be doing really well. You have to keep the vampires at bay when you can.
The plan for today includes figuring out how to get the next CCHS test done. The doctors are going to call the lab in Chicago where they did the original CCHS test to find out what we need to do to get the gene sequencing done.
They also want to do an echocardiogram to look at Eli's heart. We've been told that this is a standard workup in a baby that presents with hypotonia so our obvious question is why have we waited until now to do it? Remember all those conversations we've had about being proactive and have we run every test we can to diagnose Eli? Somehow we missed this and it's becoming clear to us that we need to keep pushing every single day to make sure we're getting the best care for Eli.
Patricia was present during the echocardiogram this afternoon and while we don't have the official results she overheard the technician saying everything looked normal. Obviously we need to double check this tomorrow morning to make sure that's the correct result but it made us feel better about Eli's heart.
We also found out that the lab in Chicago would use the blood work they had for Eli's PHOX2B test to do the gene sequencing. That's good news too because it means we don't need to suck anymore blood out of our previously anemic son who has just received donor blood and appears to be doing really well. You have to keep the vampires at bay when you can.
Monday, March 29, 2010
03/29/10 Results
This morning we had our first hematocrit test since the blood transfusion and Eli's hematocrit was finally at a normal level. We're finally starting to see something positive for a change.
Patricia spent the day at the hospital again and had an opportunity to meet with one of the neurologists and the chief pulmonologist. The pulmonologist still thinks we should move forward with the tracheostomy. We're still not sure the tracheostomy is going to be the best long term approach to Eli's care but we've asked the hospital homecare staff to gather some additional information for us, like the availability of home nursing care, etc... There's a lot that goes into a tracheostomy and we want to make sure we have all the facts plus we feel like Eli is continuing to grow stronger so we'll delay as long as we're sure Eli is safe and doing well on the BiPAP. Right now the general consensus is that Eli has what they call Congenital Central Hypoventilation Syndrome or CCHS for those who like acronyms. There are still some differing opinions on this "working diagnosis" though. The pulmonologist doesn't think Eli has CCHS. I had Patricia follow up with him to ask why and he said it was because CCHS patients don't present with hypotonia. (WRONG!) My research has turned up some pretty substantial and credible sources that indicate about 25% of CCHS patients had hypotonia. In fact there is a very informative survey that was done on patients with CCHS that helps define what living with and taking care of someone with CCHS is like. CCHS is also called Ondine's Curse. I've written a little about it in my previous blogs. There is more information located at the following link, http://www.cchsnetwork.org/.
Eli was previously tested for a genetic mutation of the PHOX2B gene and the result was negative. We've since researched the issue a little further and found that the majority of individuals with CCHS (90%) test positive for this mutation. The remaining individuals with CCHS (10%) can be identified by further genetic sequencing of the PHOX2B gene. Since Eli exhibits a lot of the symptoms of this disorder we've been pressing the doctors to send off some blood work to have the gene sequencing done.
Eli has been on an interesting schedule to kind of feel around the edges of his CO2 problem. From 8:00am to 4:00pm Eli is off BiPAP and on regular oxygen through the nasal cannula. They test his CO2 right before putting him back on BiPAP for the rest of the night. Today Eli had a CO2 level of 62 when they tested him. Yesterday it was 56 and it's been somewhere in the 55 to 65 ball park for the last several days. Of course this schedule is a little tougher on me because I come straight to the hospital from work and get there well after he goes back on BiPAP. It's a little harder to hold Eli and cuddle him with the BiPAP on. The trade off isn't too bad though since he gets to spend all day snuggling with Patricia while he's off the BiPAP. I know the bonding experience has been hard on Patricia so I don't begrudge her the "face" time with Eli.
When I got to the hospital this evening Eli was already hooked up to the BiPAP but they were using the nasal prongs instead of the mask. We've tried the prongs so many times now that it makes me a little angry when I see Eli with them on. They never work right for Eli. He seemed to be doing ok for the first hour after I arrived but he was awake. As soon as he fell asleep his oxygen saturations started to drop and "ping pong" up and down. I told the nurse that we needed to switch him back to the mask so she went to talk to one of the doctors. The next thing I know the resident tells me they want to get another x-ray of Eli's chest to make sure everything is going ok. She mentioned that they hadn't done one in a while so I didn't argue with her but the x-ray was normal so I felt like it was another added dose of radiation that Eli just didn't need. After that I got a little more forceful and suggested (nicely) that we switch Eli to the mask instead of the nasal prongs. They made the change and guess what? It was smooth sailing for the rest of the night. After this little experience I asked (again very politely) that we stick with the mask and not use the prongs again. The resident said she would make a note in the system. My job as a "PITA" father complete, I retired to the sleeper room to get some much needed rest.
Patricia spent the day at the hospital again and had an opportunity to meet with one of the neurologists and the chief pulmonologist. The pulmonologist still thinks we should move forward with the tracheostomy. We're still not sure the tracheostomy is going to be the best long term approach to Eli's care but we've asked the hospital homecare staff to gather some additional information for us, like the availability of home nursing care, etc... There's a lot that goes into a tracheostomy and we want to make sure we have all the facts plus we feel like Eli is continuing to grow stronger so we'll delay as long as we're sure Eli is safe and doing well on the BiPAP. Right now the general consensus is that Eli has what they call Congenital Central Hypoventilation Syndrome or CCHS for those who like acronyms. There are still some differing opinions on this "working diagnosis" though. The pulmonologist doesn't think Eli has CCHS. I had Patricia follow up with him to ask why and he said it was because CCHS patients don't present with hypotonia. (WRONG!) My research has turned up some pretty substantial and credible sources that indicate about 25% of CCHS patients had hypotonia. In fact there is a very informative survey that was done on patients with CCHS that helps define what living with and taking care of someone with CCHS is like. CCHS is also called Ondine's Curse. I've written a little about it in my previous blogs. There is more information located at the following link, http://www.cchsnetwork.org/.
Eli was previously tested for a genetic mutation of the PHOX2B gene and the result was negative. We've since researched the issue a little further and found that the majority of individuals with CCHS (90%) test positive for this mutation. The remaining individuals with CCHS (10%) can be identified by further genetic sequencing of the PHOX2B gene. Since Eli exhibits a lot of the symptoms of this disorder we've been pressing the doctors to send off some blood work to have the gene sequencing done.
Eli has been on an interesting schedule to kind of feel around the edges of his CO2 problem. From 8:00am to 4:00pm Eli is off BiPAP and on regular oxygen through the nasal cannula. They test his CO2 right before putting him back on BiPAP for the rest of the night. Today Eli had a CO2 level of 62 when they tested him. Yesterday it was 56 and it's been somewhere in the 55 to 65 ball park for the last several days. Of course this schedule is a little tougher on me because I come straight to the hospital from work and get there well after he goes back on BiPAP. It's a little harder to hold Eli and cuddle him with the BiPAP on. The trade off isn't too bad though since he gets to spend all day snuggling with Patricia while he's off the BiPAP. I know the bonding experience has been hard on Patricia so I don't begrudge her the "face" time with Eli.
When I got to the hospital this evening Eli was already hooked up to the BiPAP but they were using the nasal prongs instead of the mask. We've tried the prongs so many times now that it makes me a little angry when I see Eli with them on. They never work right for Eli. He seemed to be doing ok for the first hour after I arrived but he was awake. As soon as he fell asleep his oxygen saturations started to drop and "ping pong" up and down. I told the nurse that we needed to switch him back to the mask so she went to talk to one of the doctors. The next thing I know the resident tells me they want to get another x-ray of Eli's chest to make sure everything is going ok. She mentioned that they hadn't done one in a while so I didn't argue with her but the x-ray was normal so I felt like it was another added dose of radiation that Eli just didn't need. After that I got a little more forceful and suggested (nicely) that we switch Eli to the mask instead of the nasal prongs. They made the change and guess what? It was smooth sailing for the rest of the night. After this little experience I asked (again very politely) that we stick with the mask and not use the prongs again. The resident said she would make a note in the system. My job as a "PITA" father complete, I retired to the sleeper room to get some much needed rest.
Friday, March 26, 2010
03/26/10 Reflection on Life
Another Friday has come upon us and Eli has been handling the blood transfusion without any complications. I spent the night at home with Ian and Obie last night so I missed the first round of infusions but I made it into the hospital this morning for Rounds and Eli is looking very pink. I think this is one of the few times I've felt like we made a good decision in supporting Eli. It's so hard to know what the right decisions are and even though we have a lot of information at hand we don't know how we're ultimately impacting Eli's life. After we made the decision to give Eli blood the doctors decided to give it to him very slowly over a 24 hour period. They have scheduled three pushes of blood with each push over roughly 4 hours. After talking to the nurses a little I've come to understand that the approach they've taken is a very conservative one but definitely warranted given Eli's overall health. In other words, he doesn't need the blood all at once so why create a bunch of undue stress on his system by giving him a big push of blood all at once.
The morning went smoothly and slipped by quickly. Patricia and I left the hospital around 10:30am to attend the funeral of our friend's Mom. We arrived at 11:00am, sat through the mass, attended the lunch after mass, and departed at 1:00pm. The funeral was a little more difficult than I had anticipated. I worked with Kathleen and her brother Jim for close to 10 years at Shurgard. It was hard to see them in mourning and it was difficult to wade through the emotions a funeral brings up when you know the people involved. Jim wrote a touching eulogy for his mother but it was clear that watching her suffer, in pain and fear for the long months prior to her death, had created a lot of anger and resentment toward God. Jim has always been a little sarcastic but his pain and anger toward God was fairly clear to Patricia and I who have gone through a similar process of questioning our faith so many times in the last two months. By anyone's account, their mom, Nancy, was an amazing woman. She dedicated her life to helping single mothers and she was active in the church for well over 35 years. This was on top of running 6 miles a day (every single day), being an active participant in her tennis club, and raising three kids, mostly as a single mother herself. After the service Patricia and I talked a little about Nancy and what we knew about her. We certainly didn't know her as well as a lot of people in the church, the place was packed with hundreds of people, but the remarkable thing was how she lived her life with dedication, compassion, and unconditional love for her children and those around her. We'll definitely remember this woman and the lessons we've learned from her and if God grants us the wisdom we might even have the opportunity to apply them to our own lives.
Back at the hospital they were just wrapping up Eli's second round of transfusions when we returned. Patricia stayed for a few more hours but it was her turn to be home with the boys tonight so she left a little before 3:00pm. I spent the rest of the afternoon doing some work. The only notable interaction with the medical staff was when the Attending dropped by for a quick talk. I asked him to follow up with neurology to get his take on the EEG results. I've learned to get information from different sources as often as possible even if you're getting the same information several times. It helps me rationalize what I'm hearing and sometimes different people will explain the medical jargon in a different way that gives us a better understanding of what's going on.
In terms of the EEG, my take away was very positive. Eli is improving. Specifically, they noted some "slowing" of the brain waves in Eli's first EEG and they didn't see any "slowing" this time around. There are still no indications of seizure activity. Eli's brain wave patterns have advanced but they are still a little behind where they think he should be. This means there doesn't appear to be a degenerative or progressive condition. I had also asked if we could "infer" that Eli was "catching up" a little and the neurologist said yes.
On the topic of dysmaturity, here is what I've learned:
Definition: Of, relating to, or characteristic of faulty embryologic development, often leading to structural and/or functional abnormalities. The failure of an organism to develop, ripen, or otherwise achieve maturity in structure or function.
The definition is fairly generic so you need to have some basis for understanding how they review EEG test results. It's probably easier to understand in terms of statistics. Over time they develop standards by performing EEG's on otherwise "healthy" children at different points in time. Once you have enough EEG's for, say, a 42 week old baby, you can form a bell curve using the results. After they test Eli they would compare the results to the standard bell curve and see that Eli's brain waves are several standard deviations on the low end. They can then back track through "younger" looking EEG's until Eli's result falls within the normal range on the bell curve to help quantify how dysmature his brain is functioning.
While I don't have the exact numbers I think we could assume that Eli was something like 3 standard deviations from the norm at 42 weeks and now he's like 2 standard deviations from the norm for someone his age. I'm totally guessing at the numbers but I think it works something like that.
Based on the brain waves and the fact that Eli has issues with his respiratory drive and swallowing the doctors feel this is a neurological issue of the central nervous system originating in the brain. The long and short being they don't think Eli brain developed exactly the way it should have but they can't see anything wrong with the brain structurally through the MRI. That doesn't mean there isn't something structurally wrong with his brain but rather we lack the technology to see it. There's also the possibility that it could be an unknown or yet untested genetic issue. Finally, it could be some issue with how the brain communicates and sends electrical impulses back and forth but they think that is unlikely since Eli is otherwise a healthy and growing baby.
Later this evening they do the third and final push of blood and Eli is fully transfused. He looks fantastic! He's nice and pink so all we need to do is test his hematocrit level and take out the IV and we've made it over a major hurdle. They plan on testing the hematocrit on Monday and if it looks good the IV can come out. Stay tuned!
The morning went smoothly and slipped by quickly. Patricia and I left the hospital around 10:30am to attend the funeral of our friend's Mom. We arrived at 11:00am, sat through the mass, attended the lunch after mass, and departed at 1:00pm. The funeral was a little more difficult than I had anticipated. I worked with Kathleen and her brother Jim for close to 10 years at Shurgard. It was hard to see them in mourning and it was difficult to wade through the emotions a funeral brings up when you know the people involved. Jim wrote a touching eulogy for his mother but it was clear that watching her suffer, in pain and fear for the long months prior to her death, had created a lot of anger and resentment toward God. Jim has always been a little sarcastic but his pain and anger toward God was fairly clear to Patricia and I who have gone through a similar process of questioning our faith so many times in the last two months. By anyone's account, their mom, Nancy, was an amazing woman. She dedicated her life to helping single mothers and she was active in the church for well over 35 years. This was on top of running 6 miles a day (every single day), being an active participant in her tennis club, and raising three kids, mostly as a single mother herself. After the service Patricia and I talked a little about Nancy and what we knew about her. We certainly didn't know her as well as a lot of people in the church, the place was packed with hundreds of people, but the remarkable thing was how she lived her life with dedication, compassion, and unconditional love for her children and those around her. We'll definitely remember this woman and the lessons we've learned from her and if God grants us the wisdom we might even have the opportunity to apply them to our own lives.
Back at the hospital they were just wrapping up Eli's second round of transfusions when we returned. Patricia stayed for a few more hours but it was her turn to be home with the boys tonight so she left a little before 3:00pm. I spent the rest of the afternoon doing some work. The only notable interaction with the medical staff was when the Attending dropped by for a quick talk. I asked him to follow up with neurology to get his take on the EEG results. I've learned to get information from different sources as often as possible even if you're getting the same information several times. It helps me rationalize what I'm hearing and sometimes different people will explain the medical jargon in a different way that gives us a better understanding of what's going on.
In terms of the EEG, my take away was very positive. Eli is improving. Specifically, they noted some "slowing" of the brain waves in Eli's first EEG and they didn't see any "slowing" this time around. There are still no indications of seizure activity. Eli's brain wave patterns have advanced but they are still a little behind where they think he should be. This means there doesn't appear to be a degenerative or progressive condition. I had also asked if we could "infer" that Eli was "catching up" a little and the neurologist said yes.
On the topic of dysmaturity, here is what I've learned:
Definition: Of, relating to, or characteristic of faulty embryologic development, often leading to structural and/or functional abnormalities. The failure of an organism to develop, ripen, or otherwise achieve maturity in structure or function.
The definition is fairly generic so you need to have some basis for understanding how they review EEG test results. It's probably easier to understand in terms of statistics. Over time they develop standards by performing EEG's on otherwise "healthy" children at different points in time. Once you have enough EEG's for, say, a 42 week old baby, you can form a bell curve using the results. After they test Eli they would compare the results to the standard bell curve and see that Eli's brain waves are several standard deviations on the low end. They can then back track through "younger" looking EEG's until Eli's result falls within the normal range on the bell curve to help quantify how dysmature his brain is functioning.
While I don't have the exact numbers I think we could assume that Eli was something like 3 standard deviations from the norm at 42 weeks and now he's like 2 standard deviations from the norm for someone his age. I'm totally guessing at the numbers but I think it works something like that.
Based on the brain waves and the fact that Eli has issues with his respiratory drive and swallowing the doctors feel this is a neurological issue of the central nervous system originating in the brain. The long and short being they don't think Eli brain developed exactly the way it should have but they can't see anything wrong with the brain structurally through the MRI. That doesn't mean there isn't something structurally wrong with his brain but rather we lack the technology to see it. There's also the possibility that it could be an unknown or yet untested genetic issue. Finally, it could be some issue with how the brain communicates and sends electrical impulses back and forth but they think that is unlikely since Eli is otherwise a healthy and growing baby.
Later this evening they do the third and final push of blood and Eli is fully transfused. He looks fantastic! He's nice and pink so all we need to do is test his hematocrit level and take out the IV and we've made it over a major hurdle. They plan on testing the hematocrit on Monday and if it looks good the IV can come out. Stay tuned!
Thursday, March 25, 2010
03/25/10 Decisions
I went to Rounds this morning and asked my 20 questions. While I didn't get a lot of answers at Rounds the Attending agreed to meet with us after Rounds to talk some more and answer any additional questions I had.
When we had a chance to meet later in the day we talked through a number of issues. We're still not sure how to support Eli's and keep his CO2 down so we're going to hold the course and continue to evaluate how he's doing. I'm still a little frustrated that we've spent so much time in the hospital and we don't know what level of respiratory care Eli needs to maintain his CO2 levels but I feel like we have a better understanding of how we want to proceed.
In the morning they drew some blood and took another look at Eli's hematocrit level. It was still sitting around 21. Part of the blood test they do tells us if Eli is making new red blood cells and he is but his overall hematocrit level is just not improving very much. During our conference with the Attending we asked about Eli's hematocrit level and we discussed options for treatment to bring it back up to a normal level. Eli is very pale and his low hematocrit level indicates that he is anemic. When you're anemic you usually don't have a lot of energy and are tired all the time. While Eli has had some good awake time recently we're starting to wonder how much of a negative impact the fatigue is causing his overall system. Is the fatigue making him too tired to breathe deeply and exchange gases efficiently? I think we could make a strong case that the fatigue is causing him to sleep more and we know he has more problems when he's sleeping than when he's awake so we feel like we need to address the hematocrit level.
It looks like we have three treatment options to address his hematocrit levels. First, we can keep giving him iron supplements and hope he slowly recovers, basically following the same course we've been on for the last month. Second, we can give Eli a drug called EPO which stimulates red blood cell growth. EPO is in the news sometimes because it's used as a performance enhancing drug by athletes, mostly endurance athletes, to boost their red blood cell counts. Red blood cells carry oxygen in the blood stream. More oxygen means more energy, more power, and more endurance. If we give Eli EPO we could expect to see some results in a couple weeks. Third, we can give Eli some additional blood (transfuse) from the blood bank. This has the benefit of giving Eli an immediate boost to his hematocrit level but it comes with a few risks. Giving someone blood opens them up to the possibility of infection or disease from the transfused blood and there is a possibility that someone could have an adverse reaction to the transfusion. All donated blood is screened and tested so the risks are very low but they still exist. Fortunately we live in an area (Seattle) with one of the best blood banks in the country. They have never had a recorded case of contamination since they started screening blood many years ago. The risk of a reaction is also very low and even lower in infants. Reactions can occur when the antibodies in the donated blood doesn't play well with the antibodies already present in the body and usually results in fever, rash, or some other benign symptoms. If there is a reaction they stop the transfusion and treat the symptoms and you move on.
Ultimately Patricia and I felt that a blood transfusion would be the best option given the low risk and the immediate benefit. It was a little scary signing the consent form but we did it and they started transfusing blood late last night. All indications point to a successful transfusion. Eli didn't have any negative reaction and his blood pressure stayed stable throughout the process. They are going to take it slow and give him a little blood tonight and some more tomorrow.
Finally, we got the results of the EEG and I had an opportunity to discuss the results with one of the neurology residents today. EEG's are kind of like sleep studies in that the results are somewhat open to interpretation but the general analysis indicates that Eli is still exhibiting brain wave patterns that are slightly dysmature. The previous EEG showed some dysmaturity and some slowness in the brain waves. The newest EEG didn't show any slowing of the brain waves and the dysmaturity had improved but it still wasn't comparable to a child of the same age as Eli. We need to get the Attending's take on the EEG but we felt this was a positive sign. Eli's EEG didn't show a progressively degenerative issue and it looks like he is actually catching up a little. Take that with a grain of salt though since EEG's don't give you black and white answers.
When we had a chance to meet later in the day we talked through a number of issues. We're still not sure how to support Eli's and keep his CO2 down so we're going to hold the course and continue to evaluate how he's doing. I'm still a little frustrated that we've spent so much time in the hospital and we don't know what level of respiratory care Eli needs to maintain his CO2 levels but I feel like we have a better understanding of how we want to proceed.
In the morning they drew some blood and took another look at Eli's hematocrit level. It was still sitting around 21. Part of the blood test they do tells us if Eli is making new red blood cells and he is but his overall hematocrit level is just not improving very much. During our conference with the Attending we asked about Eli's hematocrit level and we discussed options for treatment to bring it back up to a normal level. Eli is very pale and his low hematocrit level indicates that he is anemic. When you're anemic you usually don't have a lot of energy and are tired all the time. While Eli has had some good awake time recently we're starting to wonder how much of a negative impact the fatigue is causing his overall system. Is the fatigue making him too tired to breathe deeply and exchange gases efficiently? I think we could make a strong case that the fatigue is causing him to sleep more and we know he has more problems when he's sleeping than when he's awake so we feel like we need to address the hematocrit level.
It looks like we have three treatment options to address his hematocrit levels. First, we can keep giving him iron supplements and hope he slowly recovers, basically following the same course we've been on for the last month. Second, we can give Eli a drug called EPO which stimulates red blood cell growth. EPO is in the news sometimes because it's used as a performance enhancing drug by athletes, mostly endurance athletes, to boost their red blood cell counts. Red blood cells carry oxygen in the blood stream. More oxygen means more energy, more power, and more endurance. If we give Eli EPO we could expect to see some results in a couple weeks. Third, we can give Eli some additional blood (transfuse) from the blood bank. This has the benefit of giving Eli an immediate boost to his hematocrit level but it comes with a few risks. Giving someone blood opens them up to the possibility of infection or disease from the transfused blood and there is a possibility that someone could have an adverse reaction to the transfusion. All donated blood is screened and tested so the risks are very low but they still exist. Fortunately we live in an area (Seattle) with one of the best blood banks in the country. They have never had a recorded case of contamination since they started screening blood many years ago. The risk of a reaction is also very low and even lower in infants. Reactions can occur when the antibodies in the donated blood doesn't play well with the antibodies already present in the body and usually results in fever, rash, or some other benign symptoms. If there is a reaction they stop the transfusion and treat the symptoms and you move on.
Ultimately Patricia and I felt that a blood transfusion would be the best option given the low risk and the immediate benefit. It was a little scary signing the consent form but we did it and they started transfusing blood late last night. All indications point to a successful transfusion. Eli didn't have any negative reaction and his blood pressure stayed stable throughout the process. They are going to take it slow and give him a little blood tonight and some more tomorrow.
Finally, we got the results of the EEG and I had an opportunity to discuss the results with one of the neurology residents today. EEG's are kind of like sleep studies in that the results are somewhat open to interpretation but the general analysis indicates that Eli is still exhibiting brain wave patterns that are slightly dysmature. The previous EEG showed some dysmaturity and some slowness in the brain waves. The newest EEG didn't show any slowing of the brain waves and the dysmaturity had improved but it still wasn't comparable to a child of the same age as Eli. We need to get the Attending's take on the EEG but we felt this was a positive sign. Eli's EEG didn't show a progressively degenerative issue and it looks like he is actually catching up a little. Take that with a grain of salt though since EEG's don't give you black and white answers.
Wednesday, March 24, 2010
03/24/10 Frustrations
The last couple days have been mostly uneventful. Eli is continuing to get bigger but there doesn't seem to be a good solution for his respiratory support as he grows. We had been under the impression that there was a plan for Eli's respiratory support that included waiting it out in the NICU until he got big enough to move up to the larger BiPAP mask that's available from Hospital Home Care.
We're being told that Eli is getting too big for the small CPAP mask he is currently using and he is too small for the larger BiPAP mask we were waiting to grow into. In the interim Eli's CO2 levels have been slowly escalating. There doesn't even seem to be a solid understanding of why Eli's CO2 levels are increasing. I feel like we need to be doing more to address this situation. How we didn't anticipate the issue with the mask sizes is a little troubling to me. We're supposed to be dealing with highly trained medical professionals whose job it is to figure out on-going care issues like this. The only thing anyone seems to recommend anymore is that we should consider doing a tracheostomy (tracheotomy) on Eli to help facilitate his respiratory support. While this is a scary thought I think we would consider it if we felt it offered Eli the greatest opportunity to get well. One of the pulmonologists met with Patricia yesterday and basically told her there were three options: 1) Take Eli home on regular oxygen, 2) Tracheostomy, or 3) We keep playing around with the CPAP/BiPAP machines and masks. Of course this only served to frustrate and anger me further. First, we've more than proven that Eli needs some level of increased respiratory support. Why they would even suggest taking Eli home on regular oxygen is beyond my comprehension but rest assured I plan on address this suggestion in the next day or two. Second, I think we're at the point where we need some convincing that a tracheostomy is going to support Eli's respiratory needs. With all the experimenting they've done with Eli's respiratory care I just can't see us committing to that course of action if we don't feel a tracheostomy is going to be 100% effective. Third, we've been messing around with Eli's respiratory care on both CPAP and BiPAP now for going on 4 weeks and I don't think anyone can legitimately tell us what level of support is going to work for Eli. The prospect of another month or more of sitting in the NICU waiting is more than I can handle.
Last but not least, we had another EEG (brain wave scan) done today. While we haven't received the final "official" results we have been told Eli's brain has continued to develop but it's still a little dysmature. I plan on implementing my own version of a holy inquisition in the morning to find out just what dysmature means because there was a lot of side stepping around this definition when we got the results of the first EEG.
The other day, a close friend, Randy, reminded me that his sister works as a registered nurse in the NICU over at Evergreen Hospital. He said she would be willing to sit down with us to talk about stuff if we needed a sounding board. I'm going to put in a call to her this week to see if she has some time to meet with us to talk about Eli. We definitely need to discuss a few things with someone who can give us an objective and informed opinion.
We're being told that Eli is getting too big for the small CPAP mask he is currently using and he is too small for the larger BiPAP mask we were waiting to grow into. In the interim Eli's CO2 levels have been slowly escalating. There doesn't even seem to be a solid understanding of why Eli's CO2 levels are increasing. I feel like we need to be doing more to address this situation. How we didn't anticipate the issue with the mask sizes is a little troubling to me. We're supposed to be dealing with highly trained medical professionals whose job it is to figure out on-going care issues like this. The only thing anyone seems to recommend anymore is that we should consider doing a tracheostomy (tracheotomy) on Eli to help facilitate his respiratory support. While this is a scary thought I think we would consider it if we felt it offered Eli the greatest opportunity to get well. One of the pulmonologists met with Patricia yesterday and basically told her there were three options: 1) Take Eli home on regular oxygen, 2) Tracheostomy, or 3) We keep playing around with the CPAP/BiPAP machines and masks. Of course this only served to frustrate and anger me further. First, we've more than proven that Eli needs some level of increased respiratory support. Why they would even suggest taking Eli home on regular oxygen is beyond my comprehension but rest assured I plan on address this suggestion in the next day or two. Second, I think we're at the point where we need some convincing that a tracheostomy is going to support Eli's respiratory needs. With all the experimenting they've done with Eli's respiratory care I just can't see us committing to that course of action if we don't feel a tracheostomy is going to be 100% effective. Third, we've been messing around with Eli's respiratory care on both CPAP and BiPAP now for going on 4 weeks and I don't think anyone can legitimately tell us what level of support is going to work for Eli. The prospect of another month or more of sitting in the NICU waiting is more than I can handle.
Last but not least, we had another EEG (brain wave scan) done today. While we haven't received the final "official" results we have been told Eli's brain has continued to develop but it's still a little dysmature. I plan on implementing my own version of a holy inquisition in the morning to find out just what dysmature means because there was a lot of side stepping around this definition when we got the results of the first EEG.
The other day, a close friend, Randy, reminded me that his sister works as a registered nurse in the NICU over at Evergreen Hospital. He said she would be willing to sit down with us to talk about stuff if we needed a sounding board. I'm going to put in a call to her this week to see if she has some time to meet with us to talk about Eli. We definitely need to discuss a few things with someone who can give us an objective and informed opinion.
Sunday, March 21, 2010
03/21/10 Baptism
Nothing really happened on Sunday. We had Eli baptized on Saturday in the late afternoon so this post is going to discuss the baptism.
Ian and Obie were both baptized Catholic. Patricia and I didn't really discuss getting Eli baptized Catholic but I always assumed we would. I guess it goes with the territory when you marry a Catholic girl and you agree to raise your children in the Catholic Church. I think the problem, for me, ended up being the timing and the overall ramifications. Patricia only mentioned it to me the other day. They have a priest who comes to the hospital to visit with the patients and their parents who was willing to perform the baptism for us. She set it up for 3:00pm on Saturday afternoon.
Yesterday, when it came time for the baptism, I found myself reluctant to participate. I don't think I could even explain why at the time. I've had a little time to reflect on it now so I think I understand my motivation or, call it, lack of motivation, regarding my participation in the baptism. At that appointed time I found myself lagging behind. I didn't actually show up until 3:30pm. I was hoping it would simply be over by the time I got there. I'm sure Patricia was furious with me for being late but I couldn't face the prospect of being part of the baptism. Ultimately they did wait and I did participate but it wasn't the same for me as it was with Ian and Obie.
After a day of reflection I think I've come to grips with why I was late. In most Christian religions baptism is seen as a necessary precursor to salvation. Salvation is the concept that God, through his divine providence, is saving us from spiritual death by providing us with eternal life after death. In essence, baptizing Eli means we're preparing Eli for death by saving his spirit. Most baptisms are joyous events carried out during good times with family and friends close by. When they are done at the side of your child's bed in the middle of the hospital you can't help but feel like you're taking the first step toward accepting your child's inevitable death.
I'm not ready to admit to myself that there's even the possibility that Eli might die. I simply cannot wrap my mind around it. Patricia told the priest she was; "very relieved" after Eli was baptized. Maybe she's reached a level of acceptance regarding Eli's mortality that I'll never be able to reach. I know I won't be relieved until he's at home and playing happily with his two brothers. Saving his soul just isn't enough for me. While I'm happy that he's taken the first steps toward salvation, I'm going to claim my right as a parent to hold onto my little boy as long as I can.
I would also like to make a special note regarding the passing of our friend Kathleen's Mom this past Friday morning. Kathleen has been a dear friend to both of us for many years going back to the early days of Shurgard where we all met. Through Kathleen we were blessed to get to know Nance. Nance was a wonderful and loving person. She had many amazing talents but the one I appreciated most was her ability to cook. She could make an absolutely amazing artichoke dip that was always a hit at Kathleen's parties. Nance had been battling cancer for a long time. She had been in and out of remission several times during the last few years but the cancer just kept coming back. While it's always hard to say goodbye, we know Nance has found an end to suffering and we know she's in a better place. Our thoughts and prayers are with Kathleen, her brother, and her sister as they cope with their loss.
Ian and Obie were both baptized Catholic. Patricia and I didn't really discuss getting Eli baptized Catholic but I always assumed we would. I guess it goes with the territory when you marry a Catholic girl and you agree to raise your children in the Catholic Church. I think the problem, for me, ended up being the timing and the overall ramifications. Patricia only mentioned it to me the other day. They have a priest who comes to the hospital to visit with the patients and their parents who was willing to perform the baptism for us. She set it up for 3:00pm on Saturday afternoon.
Yesterday, when it came time for the baptism, I found myself reluctant to participate. I don't think I could even explain why at the time. I've had a little time to reflect on it now so I think I understand my motivation or, call it, lack of motivation, regarding my participation in the baptism. At that appointed time I found myself lagging behind. I didn't actually show up until 3:30pm. I was hoping it would simply be over by the time I got there. I'm sure Patricia was furious with me for being late but I couldn't face the prospect of being part of the baptism. Ultimately they did wait and I did participate but it wasn't the same for me as it was with Ian and Obie.
After a day of reflection I think I've come to grips with why I was late. In most Christian religions baptism is seen as a necessary precursor to salvation. Salvation is the concept that God, through his divine providence, is saving us from spiritual death by providing us with eternal life after death. In essence, baptizing Eli means we're preparing Eli for death by saving his spirit. Most baptisms are joyous events carried out during good times with family and friends close by. When they are done at the side of your child's bed in the middle of the hospital you can't help but feel like you're taking the first step toward accepting your child's inevitable death.
I'm not ready to admit to myself that there's even the possibility that Eli might die. I simply cannot wrap my mind around it. Patricia told the priest she was; "very relieved" after Eli was baptized. Maybe she's reached a level of acceptance regarding Eli's mortality that I'll never be able to reach. I know I won't be relieved until he's at home and playing happily with his two brothers. Saving his soul just isn't enough for me. While I'm happy that he's taken the first steps toward salvation, I'm going to claim my right as a parent to hold onto my little boy as long as I can.
I would also like to make a special note regarding the passing of our friend Kathleen's Mom this past Friday morning. Kathleen has been a dear friend to both of us for many years going back to the early days of Shurgard where we all met. Through Kathleen we were blessed to get to know Nance. Nance was a wonderful and loving person. She had many amazing talents but the one I appreciated most was her ability to cook. She could make an absolutely amazing artichoke dip that was always a hit at Kathleen's parties. Nance had been battling cancer for a long time. She had been in and out of remission several times during the last few years but the cancer just kept coming back. While it's always hard to say goodbye, we know Nance has found an end to suffering and we know she's in a better place. Our thoughts and prayers are with Kathleen, her brother, and her sister as they cope with their loss.
Saturday, March 20, 2010
03/20/10 Picture Update
I found out this morning that the nurse decided to take Eli off his CPAP during the evening for another 3 hours. They tested his CO2 after his break and his level was up to a 77. That's the highest reading we've had to date. I asked why they took him off the CPAP last night. We are only supposed to have him off twice a day and those periods are reserved for Mom and Dad. At Rounds this morning I vented my concerns and the Attending Physician agreed. We'll make a note that says no unofficial breaks because he needs the CPAP support.
The rest of the blog today is going to include some picture updates. I'm putting the pictures of his umbilical granuloma at the bottom. If you are squeamish please don't view the photos. They aren't horrible but what I consider gross and what others consider gross are obviously going to be different.
Enjoy!
A) Snuggle time with Daddy
B) Ian asks, "Why is Eli sick?" It's enough to break my heart...
C) Dude! What the heck is that on my Son's feet?
D) I'm going to have a SERIOUS talk with Patricia!
E) Eli on the CPAP
F) This is what silver nitrate does to your skin
The rest of the blog today is going to include some picture updates. I'm putting the pictures of his umbilical granuloma at the bottom. If you are squeamish please don't view the photos. They aren't horrible but what I consider gross and what others consider gross are obviously going to be different.
Enjoy!
A) Snuggle time with Daddy
B) Ian asks, "Why is Eli sick?" It's enough to break my heart...
C) Dude! What the heck is that on my Son's feet?
D) I'm going to have a SERIOUS talk with Patricia!
E) Eli on the CPAP
F) This is what silver nitrate does to your skin
Friday, March 19, 2010
03/19/10 Friday Update
Another Friday in the hospital and we're still in the NICU. Today went well but Eli is a little constipated. The nurse says that's fairly common with the iron supplements Eli is getting. She is planning to give him a little laxative to help loosen things up.
*** And it's about this time that I realize I'm blogging about my child's bowel movements. Unlike my Dad who thinks discussing bowel movements to be an engaging and interesting topic, I find the whole thing a little repulsive. Enough said. ***
The only thing going on at this point is our desire to get out of the hospital and barring that to get out of the NICU. We asked for a copy of our detailed billing and it isn't pretty. We're spending about $10,000 a day to be in the NICU and we're here primarily for respiratory support which seems very possible to handle at home. The Attending Physician completely agrees with us. He's been trying to tackle the problem in a straight forward and proactive manner and we very much appreciate that. The problem we're faced with is one they run into maybe one or two times a year. The mask Eli is on for his CPAP is getting too small and the home care mask is a little too big. There isn't a good solution for in-between so we're stuck sitting in the NICU at a cost of $10,000 a day.
Now it's time for a little note about the cost of staying in the hospital. Today marks day 41 that we've been in the hospital. Our total bill is a little over $300,000 and we're looking at the possibility of being here another month or two. It costs $10,000 a day to be in the NICU and roughly $4,000 a day to stay on pediatric floor. This doesn't include the cost of labs, tests, or special consults. I have very good insurance so my out of pocket expense will be very little and the insurance companies all negotiate discounted rates for services so the actual billing will probably be cut in half or more by the time it's passed on to the insurance company. What is my point? Make sure you have damn good health insurance. If you don't have health insurance right now go get some. I never thought I would end up with a child in the hospital for 40+ days and if I didn't have good insurance coverage I'd be filing for bankruptcy right now. All those lessons my Dad drilled into me about never going without health insurance sure seem like sage advice now. Thanks Pops!
This evening went well too. Eli took 20CC's of formula from the bottle for me tonight. He's making great progress with his feedings and he's gaining weight exactly like he should be. I've got Eli off his CPAP and we're having a little bonding time. Eli is allowed to be off his CPAP for 2 breaks of 4 hours each. When he's off he is on regular flow oxygen. After Eli's break we put him back on the CPAP and it's a bit of a struggle because he's moving around a lot and the mask is a touch too small. It's getting late so I'm calling it a day.
*** And it's about this time that I realize I'm blogging about my child's bowel movements. Unlike my Dad who thinks discussing bowel movements to be an engaging and interesting topic, I find the whole thing a little repulsive. Enough said. ***
The only thing going on at this point is our desire to get out of the hospital and barring that to get out of the NICU. We asked for a copy of our detailed billing and it isn't pretty. We're spending about $10,000 a day to be in the NICU and we're here primarily for respiratory support which seems very possible to handle at home. The Attending Physician completely agrees with us. He's been trying to tackle the problem in a straight forward and proactive manner and we very much appreciate that. The problem we're faced with is one they run into maybe one or two times a year. The mask Eli is on for his CPAP is getting too small and the home care mask is a little too big. There isn't a good solution for in-between so we're stuck sitting in the NICU at a cost of $10,000 a day.
Now it's time for a little note about the cost of staying in the hospital. Today marks day 41 that we've been in the hospital. Our total bill is a little over $300,000 and we're looking at the possibility of being here another month or two. It costs $10,000 a day to be in the NICU and roughly $4,000 a day to stay on pediatric floor. This doesn't include the cost of labs, tests, or special consults. I have very good insurance so my out of pocket expense will be very little and the insurance companies all negotiate discounted rates for services so the actual billing will probably be cut in half or more by the time it's passed on to the insurance company. What is my point? Make sure you have damn good health insurance. If you don't have health insurance right now go get some. I never thought I would end up with a child in the hospital for 40+ days and if I didn't have good insurance coverage I'd be filing for bankruptcy right now. All those lessons my Dad drilled into me about never going without health insurance sure seem like sage advice now. Thanks Pops!
This evening went well too. Eli took 20CC's of formula from the bottle for me tonight. He's making great progress with his feedings and he's gaining weight exactly like he should be. I've got Eli off his CPAP and we're having a little bonding time. Eli is allowed to be off his CPAP for 2 breaks of 4 hours each. When he's off he is on regular flow oxygen. After Eli's break we put him back on the CPAP and it's a bit of a struggle because he's moving around a lot and the mask is a touch too small. It's getting late so I'm calling it a day.
Thursday, March 18, 2010
03/18/10 No Luck
Eli's feeds have been going really well. He is taking the bottle about 3 or 4 times a day and he is getting a good 20 to 30CC's at every feeding. Right now 30CC's is the maximum they want us to try since we're still working on his swallowing but he hasn't had any problems so far. We are feeding him 95CC's every 3 hours so whatever he doesn't take via the bottle we give him through the NG tube.
Our nurse this morning was one of the "old timer" nurses who we've become friendly with over the last few weeks. We talked about Eli's granuloma and how the silver nitrate was applied. The nurse told us that the hospital was going to change their policy as a result of Eli's unfortunately experience and they were going to require the doctor who wrote the order for silver nitrate to actually perform the procedure. While this doesn't "make it right" at least it won't happen again to someone else.
Later in the afternoon they tried the BiPAP mask on Eli for a while. By all accounts it didn't go very well. The mask is a little too big and Eli was very upset and fussy when they put it on him. We'll try to get some pictures of the mask held up to his face for reference. We are going to wait a while before trying it again. We haven't had a chance to discuss a new timeline with the doctors yet but it will be high on our priority list next week.
Our nurse this morning was one of the "old timer" nurses who we've become friendly with over the last few weeks. We talked about Eli's granuloma and how the silver nitrate was applied. The nurse told us that the hospital was going to change their policy as a result of Eli's unfortunately experience and they were going to require the doctor who wrote the order for silver nitrate to actually perform the procedure. While this doesn't "make it right" at least it won't happen again to someone else.
Later in the afternoon they tried the BiPAP mask on Eli for a while. By all accounts it didn't go very well. The mask is a little too big and Eli was very upset and fussy when they put it on him. We'll try to get some pictures of the mask held up to his face for reference. We are going to wait a while before trying it again. We haven't had a chance to discuss a new timeline with the doctors yet but it will be high on our priority list next week.
Wednesday, March 17, 2010
03/17/10 Mistakes
Patricia called me at work to give me an update on how Eli was doing today. It's part of the little routine we've established. She said the Eli had an elevated heart rate over night and the doctors were a little concerned but they weren't sure why his heart rate was elevated. Patricia also said Eli pulled out his NG feeding tube last night. We have been warned that kids have a tendency to pull out their feeding tube so it isn't a big deal...unless you have to put it back in at which point it becomes a real pain for the care giver. Everything appears to be normal now and he had a great night with no oxygen desaturations.
They decide Eli can be off the CPAP all day today. He is on normal low flow oxygen through a nasal cannula. I think he is getting three quarters of a liter. This is fairly standard and he seems to do really well on it.
Eli's belly button hasn't fully healed up yet either. The umbilical cord has fallen off but it's still weeping a little fluid. Yesterday one of the doctors came in and examined it and said Eli has an umbilical granuloma. Off to the internet we go to look up more medical terminology. It turns out an umbilical granuloma isn't a big deal. An umbilical granuloma is a piece of living tissue that remains on your baby's belly button after the umbilical cord falls off. Rather than healing up and becoming covered with skin cells, a bright red stalk of living tissue remains on the belly button. If not treated, this spot will continue to produce a sticky mucus-like substance which can cause irritation and eventually become infected. Granulomas occur in about 1 in 500 births. Normal treatment includes tying off the granuloma and allowing it to wither and fall off, freezing it off with liquid nitrogen, or cauterizing it with silver nitrate. They decide to use silver nitrate to cauterize it.
Later in the morning Patricia went to change a diaper and discovered a bandage on Eli's belly button covering about a silver dollar sized burn. It looked more like a wound that a treatment for the umbilical granuloma. She asked what was going on and the nurse said they treated his granuloma with silver nitrate but some of it got outside the belly button. This, my friends, is called a mistake. Patricia was livid. The hospital wound specialist came in and all the doctors in the NICU examined Eli today. The hospital has a special nurse who documents skin and tissue injuries like this so she came in and took some photos of Eli's wound. This is the second time she's been to see Eli. When we were down on the floor they bandaged his foot too tightly with some rubbery self adherent medical tape called Coban and it left bruises and broken blood vessels near the skin fold on his foot that took weeks to heal.
So how did this happen? Well it turns out that it was one of the younger nurses who treated Eli. Apparently they don't teach people about silver nitrate in nursing school anymore because she liberally smeared it on his belly button and surrounding skin. Silver nitrate is a chemical compound that burns. The actual umbilical granuloma doesn't contain any nerve cells so burning it off to cauterize it isn't a big deal. No pain and no fuss. When you liberally spread it on someone's belly button it burns and causes pain. They applied the silver nitrate at about 10:00pm last night. Let's put the timeline together now. Apply burning chemical to my son's skin at 10:00pm followed by an elevated heart rate over night (aka pain response) followed by pulling out his feeding tube (aka thrashing and squirming) and resulting in no oxygen desaturations (aka no sleep apnea because he was awake all night). I'd say the mystery of the elevated heart rate is solved.
We're starting to feel like every day we're in the hospital we are putting Eli at a greater risk for these stupid little mistakes. We're averaging one mistake every 15 to 20 days.
It's evening now and Eli has been off his CPAP all day. They drew a little blood to test his CO2 levels and they are elevated. His CO2 level is 67. When we take Eli off the CPAP he is on oxygen. This keeps his oxygen saturation levels up but it masks the underlying problem. Specifically, the underlying problem has to do with the fact that Eli isn't exchanging gases efficiently. He is hypoventilating or shallow breathing so he's pushing CO2 out and sucking it right back in making it hard for his body to rid itself of the CO2. The oxygen helps prevent desaturations but it doesn't help him push air in and out. The CPAP uses positive pressure to ventilate and helps to increase gas exchange resulting in lower CO2 levels. It's clear that Eli needs the CPAP support at this point so our roadmap to get home is looking a little bumpy. Hopefully tomorrow will bring some more answers. They are going to try the BiPAP mask on Eli during the day tomorrow and while it's a little too big right now it might not be impossible. We'll hope for the best.
They decide Eli can be off the CPAP all day today. He is on normal low flow oxygen through a nasal cannula. I think he is getting three quarters of a liter. This is fairly standard and he seems to do really well on it.
Eli's belly button hasn't fully healed up yet either. The umbilical cord has fallen off but it's still weeping a little fluid. Yesterday one of the doctors came in and examined it and said Eli has an umbilical granuloma. Off to the internet we go to look up more medical terminology. It turns out an umbilical granuloma isn't a big deal. An umbilical granuloma is a piece of living tissue that remains on your baby's belly button after the umbilical cord falls off. Rather than healing up and becoming covered with skin cells, a bright red stalk of living tissue remains on the belly button. If not treated, this spot will continue to produce a sticky mucus-like substance which can cause irritation and eventually become infected. Granulomas occur in about 1 in 500 births. Normal treatment includes tying off the granuloma and allowing it to wither and fall off, freezing it off with liquid nitrogen, or cauterizing it with silver nitrate. They decide to use silver nitrate to cauterize it.
Later in the morning Patricia went to change a diaper and discovered a bandage on Eli's belly button covering about a silver dollar sized burn. It looked more like a wound that a treatment for the umbilical granuloma. She asked what was going on and the nurse said they treated his granuloma with silver nitrate but some of it got outside the belly button. This, my friends, is called a mistake. Patricia was livid. The hospital wound specialist came in and all the doctors in the NICU examined Eli today. The hospital has a special nurse who documents skin and tissue injuries like this so she came in and took some photos of Eli's wound. This is the second time she's been to see Eli. When we were down on the floor they bandaged his foot too tightly with some rubbery self adherent medical tape called Coban and it left bruises and broken blood vessels near the skin fold on his foot that took weeks to heal.
So how did this happen? Well it turns out that it was one of the younger nurses who treated Eli. Apparently they don't teach people about silver nitrate in nursing school anymore because she liberally smeared it on his belly button and surrounding skin. Silver nitrate is a chemical compound that burns. The actual umbilical granuloma doesn't contain any nerve cells so burning it off to cauterize it isn't a big deal. No pain and no fuss. When you liberally spread it on someone's belly button it burns and causes pain. They applied the silver nitrate at about 10:00pm last night. Let's put the timeline together now. Apply burning chemical to my son's skin at 10:00pm followed by an elevated heart rate over night (aka pain response) followed by pulling out his feeding tube (aka thrashing and squirming) and resulting in no oxygen desaturations (aka no sleep apnea because he was awake all night). I'd say the mystery of the elevated heart rate is solved.
We're starting to feel like every day we're in the hospital we are putting Eli at a greater risk for these stupid little mistakes. We're averaging one mistake every 15 to 20 days.
It's evening now and Eli has been off his CPAP all day. They drew a little blood to test his CO2 levels and they are elevated. His CO2 level is 67. When we take Eli off the CPAP he is on oxygen. This keeps his oxygen saturation levels up but it masks the underlying problem. Specifically, the underlying problem has to do with the fact that Eli isn't exchanging gases efficiently. He is hypoventilating or shallow breathing so he's pushing CO2 out and sucking it right back in making it hard for his body to rid itself of the CO2. The oxygen helps prevent desaturations but it doesn't help him push air in and out. The CPAP uses positive pressure to ventilate and helps to increase gas exchange resulting in lower CO2 levels. It's clear that Eli needs the CPAP support at this point so our roadmap to get home is looking a little bumpy. Hopefully tomorrow will bring some more answers. They are going to try the BiPAP mask on Eli during the day tomorrow and while it's a little too big right now it might not be impossible. We'll hope for the best.
Tuesday, March 16, 2010
03/16/10 Week 6
Eli is 6 weeks old today and today marks the 5th full week at Seattle Children's Hospital.
We made a little progress on a couple different fronts today:
First, Eli has had a couple good feeds on the bottle. We're starting to feel like there's some light at the end of the tunnel with regard to getting rid of the NG tube. We know we still have a way to go but we've started and that's what counts.
Second, Patricia has been pushing and pushing to get one of the BiPAP masks to see just how big Eli will need to be in order to transition to BiPAP. With the help of one of the wonderful occupational therapists she managed to get her hands on a small mask and it isn't that much bigger than the one they're using on Eli now. Instead of another 2 to 3 months in the NICU we might be looking at 4 weeks assuming Eli still needs the CPAP/BiPAP level of respiratory support when he's sleeping. I think we have concluded that he does need this level of support but we're going to schedule a meeting with pulmonary to discuss it further. At any rate, we certainly feel better with him on it and we feel that it cuts down on the frequency of his oxygen desaturations by a substantial margin.
Third, we've been experimenting with positioning so Eli has been getting some tummy time. When he's sleeping on his belly the force of gravity on the soft tissues in his neck helps keep the airway open preventing obstructive sleep apnea. Of course he can't be on the CPAP/BiPAP while on his belly because he squirms too much to keep the mask on but when he's hanging out sans headgear it seems to work for him.
Finally, we've been having some issues with Ian and Obie lately. They have been acting out more often and they have been a little "delicate" lately. I think the separation anxiety is starting to take its toll. Patricia and I decided that both of us needed to be home this evening with the boys. We're trying to figure out a solid plan that minimizes the amount of time Eli has to spend in the hospital alone while maximizing the amount of time we get to spend as a family. We had dinner together, as a family, in our own home, for the first time since Obie's birthday on February 20th. This was only the second time since Eli was born that both Patricia and I have been home together. I think Ian and Obie responded well so we're going to try to do this a few times a week from now on.
It's pretty amazing how perceptive kids can be. After dinner tonight Ian asked Patricia, "Who is going to stay home tonight, you or Daddy?" It's a little heart breaking that this arrangement has become normal to our 4 year old but we're working on it.
We made a little progress on a couple different fronts today:
First, Eli has had a couple good feeds on the bottle. We're starting to feel like there's some light at the end of the tunnel with regard to getting rid of the NG tube. We know we still have a way to go but we've started and that's what counts.
Second, Patricia has been pushing and pushing to get one of the BiPAP masks to see just how big Eli will need to be in order to transition to BiPAP. With the help of one of the wonderful occupational therapists she managed to get her hands on a small mask and it isn't that much bigger than the one they're using on Eli now. Instead of another 2 to 3 months in the NICU we might be looking at 4 weeks assuming Eli still needs the CPAP/BiPAP level of respiratory support when he's sleeping. I think we have concluded that he does need this level of support but we're going to schedule a meeting with pulmonary to discuss it further. At any rate, we certainly feel better with him on it and we feel that it cuts down on the frequency of his oxygen desaturations by a substantial margin.
Third, we've been experimenting with positioning so Eli has been getting some tummy time. When he's sleeping on his belly the force of gravity on the soft tissues in his neck helps keep the airway open preventing obstructive sleep apnea. Of course he can't be on the CPAP/BiPAP while on his belly because he squirms too much to keep the mask on but when he's hanging out sans headgear it seems to work for him.
Finally, we've been having some issues with Ian and Obie lately. They have been acting out more often and they have been a little "delicate" lately. I think the separation anxiety is starting to take its toll. Patricia and I decided that both of us needed to be home this evening with the boys. We're trying to figure out a solid plan that minimizes the amount of time Eli has to spend in the hospital alone while maximizing the amount of time we get to spend as a family. We had dinner together, as a family, in our own home, for the first time since Obie's birthday on February 20th. This was only the second time since Eli was born that both Patricia and I have been home together. I think Ian and Obie responded well so we're going to try to do this a few times a week from now on.
It's pretty amazing how perceptive kids can be. After dinner tonight Ian asked Patricia, "Who is going to stay home tonight, you or Daddy?" It's a little heart breaking that this arrangement has become normal to our 4 year old but we're working on it.
Monday, March 15, 2010
03/15/10 Monday Updates
After a long and somewhat stressful weekend we finally have some good news to share. Eli is still doing well. He had another swallow study this morning and while his swallowing is still a little delayed he didn't aspirate and he seems capable of bottle feeding. The occupational therapist wants us to take things slow. We're going to start off feeding Eli 15CC's via bottle for the first time today and we can work that up to 30CC's over the next week or so if he continues to do well.
Eli's CO2 and bicarbonate were also down this morning as a result of him being on the CPAP more last night. At Rounds this morning we finally decided it was time to eliminate the high flow portion of Eli's respiratory support. We had long suspected that high flow wasn't working for Eli and now we don't have to worry about it anymore.
Finally, the last piece of good news on Eli is we got the test results back from the PHOX2B gene sequence they sent off. Eli's test came back negative so he doesn't have the genetic marker for Ondine's Curse or Congenital Central Hypoventilation Syndrome (CCHS) for those desiring a more medical vernacular. Never heard of Ondine's Curse?
[Its name is a reference to the myth of Ondine, a water nymph who had an unfaithful mortal lover. He swore to her that his "every waking breath would be a testimony of [his] love", and upon witnessing his adultery, she cursed that if he should fall asleep, he would forget to breathe. Eventually, he fell asleep from sheer exhaustion, and his breathing stopped.]
There is still some speculation that Eli has the disorder because many of his clinical symptoms fit with CCHS although he doesn't seem to have any problems maintaining his breathing when he is awake and alert. Only time will tell if his sleep apnea will improve.
The news we've received from Michelle and Fred about little baby Drew Michael Morganthaler has been generally positive too. Drew was born breach and the umbilical cord wrapped around his body and presented with an initial apgar score of 3. They immediately resuscitated him and rushed him up to the NICU where they gave him O2 and IV fluids. Word this evening is Drew Michael is off the oxygen and breathing just fine and seems to be doing much better. Once we have a full update we'll let everyone know but the general consensus out of Montana is he will pull through and be just fine.
Eli's CO2 and bicarbonate were also down this morning as a result of him being on the CPAP more last night. At Rounds this morning we finally decided it was time to eliminate the high flow portion of Eli's respiratory support. We had long suspected that high flow wasn't working for Eli and now we don't have to worry about it anymore.
Finally, the last piece of good news on Eli is we got the test results back from the PHOX2B gene sequence they sent off. Eli's test came back negative so he doesn't have the genetic marker for Ondine's Curse or Congenital Central Hypoventilation Syndrome (CCHS) for those desiring a more medical vernacular. Never heard of Ondine's Curse?
[Its name is a reference to the myth of Ondine, a water nymph who had an unfaithful mortal lover. He swore to her that his "every waking breath would be a testimony of [his] love", and upon witnessing his adultery, she cursed that if he should fall asleep, he would forget to breathe. Eventually, he fell asleep from sheer exhaustion, and his breathing stopped.]
There is still some speculation that Eli has the disorder because many of his clinical symptoms fit with CCHS although he doesn't seem to have any problems maintaining his breathing when he is awake and alert. Only time will tell if his sleep apnea will improve.
The news we've received from Michelle and Fred about little baby Drew Michael Morganthaler has been generally positive too. Drew was born breach and the umbilical cord wrapped around his body and presented with an initial apgar score of 3. They immediately resuscitated him and rushed him up to the NICU where they gave him O2 and IV fluids. Word this evening is Drew Michael is off the oxygen and breathing just fine and seems to be doing much better. Once we have a full update we'll let everyone know but the general consensus out of Montana is he will pull through and be just fine.
Sunday, March 14, 2010
03/14/10 More Prayers Needed
Everything has been going well this weekend. Eli is still stable and he's getting some iron now. He's had some good awake time over the weekend but he doesn't look very comfortable on the high flow oxygen. We've had a few desaturations over the weekend that caused Patricia and me to wonder if the high flow is doing any good. Eli is on 21% oxygen which is the same thing as room air. The big advantage of the CPAP is it blows a continuous stream of pressurized air into Eli's nose. The high flow nasal cannula doesn't even stay put in his nose most of the time let along create any positive pressure.
Patricia's sister Michelle was pregnant and due about a month or so after Patricia. This morning they induced Michelle and we just got news that she had her baby. Unfortunately there were some complications. Patricia told me the baby was born breach with the umbilical cord wrapped around the baby's body. They rushed the baby up to the NICU after delivery. We don't have a status update on how their baby is doing yet but our prayers and thoughts are with them. It was definitely hard news to take and my heart goes out to them tonight because we've been going through this for so long that some of our fear and panic has subsided. You get a little numb after a while. I know Michelle and Fred are hurting tonight so please direct your prayers toward them and pray for a swift recovery for little baby Drew Michael Morganthaler.
Patricia's sister Michelle was pregnant and due about a month or so after Patricia. This morning they induced Michelle and we just got news that she had her baby. Unfortunately there were some complications. Patricia told me the baby was born breach with the umbilical cord wrapped around the baby's body. They rushed the baby up to the NICU after delivery. We don't have a status update on how their baby is doing yet but our prayers and thoughts are with them. It was definitely hard news to take and my heart goes out to them tonight because we've been going through this for so long that some of our fear and panic has subsided. You get a little numb after a while. I know Michelle and Fred are hurting tonight so please direct your prayers toward them and pray for a swift recovery for little baby Drew Michael Morganthaler.
Friday, March 12, 2010
03/12/10 New Revelations
Last night we were told that Eli's hematocrit levels were exceptionally low. When they drew blood to test for CO2 yesterday they accidentally selected the "test all" option when submitting the blood work to the lab. The lab result came back with a hematocrit level of 22 which is fairly low meaning Eli is anemic. We quickly did some research on-line to figure out what the heck hematocrit is. From my research I believe hematocrit measures the amount of red blood cells in your blood.
The nurse told us that Eli might need a blood transfusion if his hematocrit levels don't increase but they usually put the baby on iron first to see if it can stimulate the production of new red blood cells. The pulmonologists were concerned as well because red blood cells carry oxygen throughout the body and Eli has oxygen saturation issues. Obviously hidden in here is the worry that Eli isn't producing new red blood cells for some reason. In my research on the internet I found that the rate of new red blood cell production is influenced by the kidneys. Is it also coincidence that the kidneys are responsible for eliminating waste like bicarbonate and Eli's bicarbonate level is still running a little high?
They ran another blood test on Eli this morning and his hematocrit level is still 22. At Rounds this morning the doctor told Patricia that they were not that concerned with Eli's hematocrit level given the amount of blood that has been drawn over the last 30 days. They also said the test showed that Eli is producing new red blood cells and his levels should return to normal but they will bolster him with an iron supplement and continue to follow his hematocrit level. Eli's CO2 level was a little lower this morning too and the doctors think that's a good sign. They feel the elevated CO2 from yesterday is the highest it will get because the test was done right after he was on high flow oxygen.
The nurse told us that Eli might need a blood transfusion if his hematocrit levels don't increase but they usually put the baby on iron first to see if it can stimulate the production of new red blood cells. The pulmonologists were concerned as well because red blood cells carry oxygen throughout the body and Eli has oxygen saturation issues. Obviously hidden in here is the worry that Eli isn't producing new red blood cells for some reason. In my research on the internet I found that the rate of new red blood cell production is influenced by the kidneys. Is it also coincidence that the kidneys are responsible for eliminating waste like bicarbonate and Eli's bicarbonate level is still running a little high?
They ran another blood test on Eli this morning and his hematocrit level is still 22. At Rounds this morning the doctor told Patricia that they were not that concerned with Eli's hematocrit level given the amount of blood that has been drawn over the last 30 days. They also said the test showed that Eli is producing new red blood cells and his levels should return to normal but they will bolster him with an iron supplement and continue to follow his hematocrit level. Eli's CO2 level was a little lower this morning too and the doctors think that's a good sign. They feel the elevated CO2 from yesterday is the highest it will get because the test was done right after he was on high flow oxygen.
Thursday, March 11, 2010
03/11/10 Thursday Pictures
Thursday has had some ups and downs. This morning there was another genetic test back and it was normal. Anything normal is good news. Eli has been on high flow oxygen now for about a day and a half and we get our first CO2 test today. They are going to draw blood right after his 4 hour window on high flow and regular oxygen.
The test results are in for the CO2 and it looks like they've gone up a little. His CO2 was 59 and bicarbonates were 35. The neonatologist said she expected the results to increase a little and she doesn't think they will go any higher. She doesn't seem worried at all but we're a little concerned.
Enjoy the pictures.
"Eli had some tummy time for the first time today. Plus we worked on sitting up with the occupational therapist. The nurse was great and took some pictures that I though you all might enjoy." ~~Patricia
The test results are in for the CO2 and it looks like they've gone up a little. His CO2 was 59 and bicarbonates were 35. The neonatologist said she expected the results to increase a little and she doesn't think they will go any higher. She doesn't seem worried at all but we're a little concerned.
Enjoy the pictures.
"Eli had some tummy time for the first time today. Plus we worked on sitting up with the occupational therapist. The nurse was great and took some pictures that I though you all might enjoy." ~~Patricia
Wednesday, March 10, 2010
03/10/10 Wednesday's Results
During Rounds this morning we were told that two tests were back. One of the outstanding genetic tests came back and it was normal. Patricia and I aren't sure what this particular genetic test was supposed to cover since it wasn't one we were keeping an eye out for but it was normal so we're not too worried. We were also told that Eli's third ceruloplasmin test was back. This latest test was sent off to a lab in Chicago after the previous two tests came back with scores in the "less than 13" category. Whatever lab they were using previously couldn't measure the results at a level lower than 13 so we've been worrying about an "abnormal" result. Ceruloplasmin is a measure of copper carrying proteins in the blood. An abnormal result can indicate a copper deficiency and copper deficiencies are particularly bad. The result from the lab in Chicago indicated a ceruloplasmin level of 11 with normal being in the range of 8+. It turns out Eli is in the normal range which is a good sign. We are still waiting for final confirmation on the Menke's genetic test but we feel better that his copper tests are now being characterized as normal.
Tuesday, March 9, 2010
03/09/10 Pulmonary Meeting
We had a quiet and uneventful weekend. Eli is still stable and doing well on the CPAP. Monday was more of the same.
Today we have a meeting with pulmonary at 11:30am. During the meeting we discuss Eli's respiratory issues and his apnea. He is only having apnea during sleep and we think it's more prevalent during his deeper dream sleep. Eli has what they call mixed sleep apnea which is a combination of central sleep apnea and obstructive sleep apnea. They think the central sleep apnea is caused by Eli's brain forgetting to tell his body to breathe. The obstructive sleep apnea is related to Eli's overall hypotonia. When Eli is in deep sleep he occasionally forgets to breathe for a few seconds. During the pause his muscles collapse a little and cause an obstruction. After a couple seconds his brain remembers that he should be breathing and his body tries to draw a breath but now it's obstructed so it takes a couple attempts to get it sorted out. In the meantime the oxygen level in his blood drops and he becomes desaturated.
The positive pressure from the CPAP helps Eli maintain his airway and it helps remind him that he needs to breathe regularly. So far he has been fairly stable on the CPAP but it's not a system we can take home on. It's not 100% clear to us why he can't go home on the CPAP other than the fact that CPAP is a higher level of respiratory support but we've been told that Eli could be on a BiPAP system at home. Of course the problem with BiPAP is they don't make a mask small enough for an infant. The smallest mask is about the size of a 3 or 4 month old. If Eli absolutely requires CPAP then it is likely we will have to stay in the NICU until Eli is old enough and big enough to fit the BiPAP mask.
Obviously the respiratory situation is the big question mark. Patricia and I have no desire to spend the next 2 or 3 months in the NICU at Seattle Children's and right now the pulmonologist has no idea what level of support Eli will need. Our plan is fairly straight forward. We are going to try to transition Eli over to high flow nasal cannula over the next week or two. If he remains stable; meaning his CO2 and bicarbonate levels remain at safe levels over the transition period, we will be able to move Eli to the regular floor and then home.
Today we have a meeting with pulmonary at 11:30am. During the meeting we discuss Eli's respiratory issues and his apnea. He is only having apnea during sleep and we think it's more prevalent during his deeper dream sleep. Eli has what they call mixed sleep apnea which is a combination of central sleep apnea and obstructive sleep apnea. They think the central sleep apnea is caused by Eli's brain forgetting to tell his body to breathe. The obstructive sleep apnea is related to Eli's overall hypotonia. When Eli is in deep sleep he occasionally forgets to breathe for a few seconds. During the pause his muscles collapse a little and cause an obstruction. After a couple seconds his brain remembers that he should be breathing and his body tries to draw a breath but now it's obstructed so it takes a couple attempts to get it sorted out. In the meantime the oxygen level in his blood drops and he becomes desaturated.
The positive pressure from the CPAP helps Eli maintain his airway and it helps remind him that he needs to breathe regularly. So far he has been fairly stable on the CPAP but it's not a system we can take home on. It's not 100% clear to us why he can't go home on the CPAP other than the fact that CPAP is a higher level of respiratory support but we've been told that Eli could be on a BiPAP system at home. Of course the problem with BiPAP is they don't make a mask small enough for an infant. The smallest mask is about the size of a 3 or 4 month old. If Eli absolutely requires CPAP then it is likely we will have to stay in the NICU until Eli is old enough and big enough to fit the BiPAP mask.
Obviously the respiratory situation is the big question mark. Patricia and I have no desire to spend the next 2 or 3 months in the NICU at Seattle Children's and right now the pulmonologist has no idea what level of support Eli will need. Our plan is fairly straight forward. We are going to try to transition Eli over to high flow nasal cannula over the next week or two. If he remains stable; meaning his CO2 and bicarbonate levels remain at safe levels over the transition period, we will be able to move Eli to the regular floor and then home.
Friday, March 5, 2010
03/05/10 A Good Meeting
Yesterday Patricia went to Evergreen to get Eli's birth records. The records indicate there was a "knot" in the umbilical cord when he was born. I vaguely remember Patricia's OBGYN saying something about the cord when Eli was delivered but she said it was minor and it wasn't an issue so I dismissed it. Now we're not so sure. We did a little research on-line and "knots" are not all that common although what complications they can cause is still a little fuzzy.
This morning at Rounds Patricia and I pressed for some answers on what we were doing to diagnose Eli and what we were doing in terms of treating his apnea and respiratory issues. We're getting frustrated just sitting around without any answers. We asked if oxygen deprivation (hypoxia) could have caused the symptoms we've seen in Eli. The attending Neonatologist said it was highly unlikely. We asked if we should repeat the MRI to see if anything had changed and we asked whether they used diffusion weighted images on the MRI. Dr. Shlafer contacted a neurologist friend in Phoenix and this was a question he recommends we ask. Diffusion weighted images are supposed to show blood flow and any potential damage related to hypoxia or loss of oxygen. The doctor said she would look at Eli's MRI herself and bring us a copy of the neurologist report on the MRI. All of the residents rotated to different departments today so we had a new crop of residents in the NICU and at Rounds this morning. The attending offered to meet with us early this evening to go over all of Eli's tests and answer any more questions we had so we wrapped things up.
At 5:00pm we had our meeting with the Neonatologist and we went over all of Eli's tests and talked some more about hypoxia and what we would see if Eli would have had an oxygen event during delivery. Essentially she said we couldn't know with any certainty but it was unlikely given the fact that respiration and the swallow response are controlled by the brain stem. In most cases of hypoxia it impacts the top of the brain's ability to send signals to the bottom of the brain and we didn't see any of that damage on the MRI. She also told us that most babies who have hypoxia during birth don't get apgar scores in the range Eli had. Eli was a pink and relatively healthy baby at birth so hypoxia is an unlikely diagnosis.
During our meeting we came up with the following questions:
Questions for Neurology
1) When is it worth repeating the MRI/EEG tests?
2) Is there any reason to look specifically at the brain stem on the next MRI?
3) Are there any other tests (genetic or otherwise) that will be helpful?
Questions for Genetics
1) The MRI/EEG were done early in our hospital stay. If Eli's symptoms are due to a metabolic disorder would we see any changes on the MRI/EEG after a month?
2) What are the results of the MRS?
3) Are there any other tests we're considering?
Questions for Pulmonary
1) Can we identify a primary pulmonologist for Eli's continued care? (Preferably one of the sleep apnea specialists)
2) Are we going to do another sleep study and if so when?
3) What is our short term and long term respiratory plan?
We also decided to ask if someone from the Neurodevelopment Department would come take a look at Eli. Usually neurodevelopment only gets involved after a diagnosis is formed and they focus on developmental issues but we figured it couldn't hurt to bring them in to evaluate Eli.
This morning at Rounds Patricia and I pressed for some answers on what we were doing to diagnose Eli and what we were doing in terms of treating his apnea and respiratory issues. We're getting frustrated just sitting around without any answers. We asked if oxygen deprivation (hypoxia) could have caused the symptoms we've seen in Eli. The attending Neonatologist said it was highly unlikely. We asked if we should repeat the MRI to see if anything had changed and we asked whether they used diffusion weighted images on the MRI. Dr. Shlafer contacted a neurologist friend in Phoenix and this was a question he recommends we ask. Diffusion weighted images are supposed to show blood flow and any potential damage related to hypoxia or loss of oxygen. The doctor said she would look at Eli's MRI herself and bring us a copy of the neurologist report on the MRI. All of the residents rotated to different departments today so we had a new crop of residents in the NICU and at Rounds this morning. The attending offered to meet with us early this evening to go over all of Eli's tests and answer any more questions we had so we wrapped things up.
At 5:00pm we had our meeting with the Neonatologist and we went over all of Eli's tests and talked some more about hypoxia and what we would see if Eli would have had an oxygen event during delivery. Essentially she said we couldn't know with any certainty but it was unlikely given the fact that respiration and the swallow response are controlled by the brain stem. In most cases of hypoxia it impacts the top of the brain's ability to send signals to the bottom of the brain and we didn't see any of that damage on the MRI. She also told us that most babies who have hypoxia during birth don't get apgar scores in the range Eli had. Eli was a pink and relatively healthy baby at birth so hypoxia is an unlikely diagnosis.
During our meeting we came up with the following questions:
Questions for Neurology
1) When is it worth repeating the MRI/EEG tests?
2) Is there any reason to look specifically at the brain stem on the next MRI?
3) Are there any other tests (genetic or otherwise) that will be helpful?
Questions for Genetics
1) The MRI/EEG were done early in our hospital stay. If Eli's symptoms are due to a metabolic disorder would we see any changes on the MRI/EEG after a month?
2) What are the results of the MRS?
3) Are there any other tests we're considering?
Questions for Pulmonary
1) Can we identify a primary pulmonologist for Eli's continued care? (Preferably one of the sleep apnea specialists)
2) Are we going to do another sleep study and if so when?
3) What is our short term and long term respiratory plan?
We also decided to ask if someone from the Neurodevelopment Department would come take a look at Eli. Usually neurodevelopment only gets involved after a diagnosis is formed and they focus on developmental issues but we figured it couldn't hurt to bring them in to evaluate Eli.
Thursday, March 4, 2010
03/04/10 Cord's Night
It's another night in the NICU for Eli and Daddy. I relieved Patricia around 3:30pm so she could drive over to Evergreen to get our medical records. We want to see if there's any information in Eli's birth records that might give us a clue for a diagnosis. Patricia's been at the hospital all day today and she was here all last night too. Tonight's her turn to go home and spend some time with Ian and Obie and it's my turn to stay overnight at the hospital.
Our night has been pretty quiet all things considered. I've been reading a book and I ate dinner in the hospital cafeteria. It was pasta night! Most of the food in the cafeteria is unappealing even for a big eater like me.
Around 8:00pm we got a new neighbor in the room next to ours. We are in a single room but every room has a sliding glass door that opens to the ward and other sliders that open to the other rooms on either side. There was an initial swarm of people coming by to examine the new baby but we've learned through hard experience that the swarm is a fairly standard protocol for a new patient as all the doctors and nurses in the NICU get up to speed on the new admit.
Around 9:30pm I take Eli off his C-Pap for some cuddle time. We do some man bonding and talk about how the men's US Olympic Hockey team should have won the gold medal game vs. Canada. If we were still in Minnesota I think Eli would be a hockey player. Unfortunately Eli is asleep for just about the entire hour I have him off the C-Pap. I put him down around 10:30pm and change his diaper which wakes him up a little.
About the same time Eli wakes up the new baby next door to us crashes. I can hear the alarms going off. Our nurse is also assigned to the new baby so we have his monitors up in our room. I can see the blood oxygen monitor falling and I can hear our nurse calling for help and for a resuscitation kit. Lots of people rush into the room and after about 30 minutes or so they get the baby stabilized. I don't think I've been that scared to be in the NICU since the first day when they admitted Eli. No one was there for the little baby next door either, no parents or caretakers. I felt sick to my stomach and sad. I took Eli's little hand in mine and said a prayer for the baby next door. I think this might be the first time I've ever said a heartfelt prayer for a complete stranger. I'm also feeling guilty for enjoying my awake time with Eli while another baby is in such distress.
At 11:30pm I head up to the sleep room to crash. I'm exhausted but I need to look into starting this Blog. An hour later I think I've got the basics so now I just need to catch up on Eli's history.
Our night has been pretty quiet all things considered. I've been reading a book and I ate dinner in the hospital cafeteria. It was pasta night! Most of the food in the cafeteria is unappealing even for a big eater like me.
Around 8:00pm we got a new neighbor in the room next to ours. We are in a single room but every room has a sliding glass door that opens to the ward and other sliders that open to the other rooms on either side. There was an initial swarm of people coming by to examine the new baby but we've learned through hard experience that the swarm is a fairly standard protocol for a new patient as all the doctors and nurses in the NICU get up to speed on the new admit.
Around 9:30pm I take Eli off his C-Pap for some cuddle time. We do some man bonding and talk about how the men's US Olympic Hockey team should have won the gold medal game vs. Canada. If we were still in Minnesota I think Eli would be a hockey player. Unfortunately Eli is asleep for just about the entire hour I have him off the C-Pap. I put him down around 10:30pm and change his diaper which wakes him up a little.
About the same time Eli wakes up the new baby next door to us crashes. I can hear the alarms going off. Our nurse is also assigned to the new baby so we have his monitors up in our room. I can see the blood oxygen monitor falling and I can hear our nurse calling for help and for a resuscitation kit. Lots of people rush into the room and after about 30 minutes or so they get the baby stabilized. I don't think I've been that scared to be in the NICU since the first day when they admitted Eli. No one was there for the little baby next door either, no parents or caretakers. I felt sick to my stomach and sad. I took Eli's little hand in mine and said a prayer for the baby next door. I think this might be the first time I've ever said a heartfelt prayer for a complete stranger. I'm also feeling guilty for enjoying my awake time with Eli while another baby is in such distress.
At 11:30pm I head up to the sleep room to crash. I'm exhausted but I need to look into starting this Blog. An hour later I think I've got the basics so now I just need to catch up on Eli's history.
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