Eli had his surgery at about 2:30pm this afternoon. Grandma and Grandpa McCormick came down to the hospital today to support us. The procedure took about 30 minutes and went very well. We thought we were out of the woods at that point and we were waiting for Eli to be transported back to the NICU for recovery when we got word that he wasn't waking up and breathing on his own.
Prior to the surgery Patricia and I had expressed our concerns about Eli's breathing and the effect anesthesia would have on him. We were told that they would take every precaution to make sure Eli was ok. They had intubated Eli prior to the surgery and he was on a ventilator during the procedure.
The recovery didn't go quite the way everyone planned. Under normal circumstances, you come out of surgery and they stop giving you anesthesia. You usually wake up within 5 to 10 minutes and start breathing on your own. You'd probably be very groggy and tired and want to "sleep" but your body's automated functions kick in. Eli has an issue with these automated functions and when he sleeps his brain doesn't work quite right so he forgets to breathe.
Once the surgery ended we had a quick visit by the GI doctor who told us the procedure went perfectly. It was almost bloodless. She showed us a picture of the inside of Eli's belly where the G-Tube was inserted through the stomach wall. Everything went well and we could head down to the NICU to wait for Eli. Everyone had previously agreed to recover Eli in the NICU after the surgery.
We headed down to the NICU as instructed and sat in the lobby waiting for 10 minutes, then 20 minutes, then 30 minutes. What's going on? Finally we hear our NICU nurse being paged. She comes out to tell us that there's been a little problem bringing Eli out of sedation but it isn't a big deal. They are going to wheel him down now and continue the process in the NICU.
After a little while we see them wheeling Eli's bed down the hallway. As they come into view we can see they are manually bagging him to keep him breathing. This was our number one concern when he went into the surgery. With his central breathing issues and his brain not telling him to breathe when he's asleep we were worried about intentionally putting him under anesthesia. Seeing them bagging Eli to keep him breathing upped the stress level on an otherwise already stressful day.
Back in the room they start work on getting the ventilator set up. There are some moments when they are trying to swap Eli over from manual bagging to ventilator support where he desaturated pretty significantly and they have to start bagging him again. The 4 of us are crowded into the room along with 5 doctors and nurses. Normally you're only allowed to have 3 people in a NICU room but I think they're making an exception and it's nice to have my parents there for support. The process to get the ventilator up and running is taking forever and I'm feeling so stressed out right now that I think I'm going to be sick. At one point Patricia says she needs some air and leaves. Soon after my parents go out to make sure Patricia is ok.
It takes a lot of work but they eventually get Eli set up on the ventilator. He appears to be stable and he's holding his oxygen saturation level now. He still isn't breathing on his own yet. There are points where he will start to gag or vomit because of the tube sitting in his throat but he isn't waking up fully enough to breathe consistently. The attending physician in the NICU is telling us we might need to have Eli on the ventilator all night.
Some more time has passed. Patricia and I are both sitting in the room with Eli. My parents left the hospital to go get the boys. They are going to take Ian and Obie back to their house for dinner and to spend the night while Patricia and I deal with Eli tonight. Patricia and I have been pretty scared and I don't think I've ever physically felt the effects of stress before but today we've both taken a beating. I think it's around 5:00pm now. They've had to suction Eli's lungs a couple times to drain some of his secretions. I'm not 100% sure we understand why he has secretions and why they have to suction him so it only adds to our stress level. By 7:00pm they have him stable and settled in for the night on the ventilator.
Patricia and I are starving and we feel like we've been put through the ringer. We definitely need some sleep but we want to stay with Eli a little longer. We pop out to get a quick bite to eat and then we're back with Eli for the rest of the night. We decide to head home around 11:00pm. Eli seems to be doing ok on the ventilator and he's sleeping. Hopefully we'll be able to extubate him tomorrow and he'll be breathing on his own.
Friday, April 30, 2010
Thursday, April 29, 2010
04/29/10 Finally Some Answers
Wednesday was another frustrating day with yet again no firm answers on why we haven't scheduled surgery but I had an opportunity to spend a good part of the day at the hospital grilling the staff. Today we get to make some decision. First off I found out yesterday that they have been trying to schedule an operating room. Why? Well, according to hospital policy the G-Tube (PEG) is a simple out patient surgery and that can be done in a procedure room but for some unknown reason the circumcision needs to be done in the operating room. I think it might have something to do with the fact that urology is involved but I couldn't get a straight answer on that. The other thing I found out yesterday is that urology only does circumcisions on Mondays and Tuesdays. What! So they've been jerking us around for the whole week and we couldn't get the circumcision done anyway. We let them know that we thought the situation was totally unacceptable but what are we going to do. We've now wasted the better part of another week dealing with this crap and we still don't have anything scheduled.
We decide that we need to move forward with the PEG procedure even if that's the only thing we can have done. We're told we can get on the schedule for Friday. Great! We could have had this done earlier in the week if people had actually spent some time to communicate with us. We ask them to move forward and get us on the schedule for Friday. The surgery is scheduled for 2:00pm Friday afternoon.
The other frustrating thing we find out today is they took Eli off his BiPAP at about 5:00am this morning. Patricia went ballistic when she found out and demanded they put him back on the BiPAP during the afternoon. I don't know what we need to do to get it through to the nurses and RT's that Eli needs to be on this mask for support. It seems like we're fighting this battle every other night.
Before we leave for the evening we ask that they make sure Eli is on his BiPAP and gets a good night of respiration for his big day tomorrow.
We decide that we need to move forward with the PEG procedure even if that's the only thing we can have done. We're told we can get on the schedule for Friday. Great! We could have had this done earlier in the week if people had actually spent some time to communicate with us. We ask them to move forward and get us on the schedule for Friday. The surgery is scheduled for 2:00pm Friday afternoon.
The other frustrating thing we find out today is they took Eli off his BiPAP at about 5:00am this morning. Patricia went ballistic when she found out and demanded they put him back on the BiPAP during the afternoon. I don't know what we need to do to get it through to the nurses and RT's that Eli needs to be on this mask for support. It seems like we're fighting this battle every other night.
Before we leave for the evening we ask that they make sure Eli is on his BiPAP and gets a good night of respiration for his big day tomorrow.
Tuesday, April 27, 2010
04/27/10 Again Nothing
Now we're into Tuesday and we're still making no progress getting the surgery scheduled. I can't figure out how they can schedule the G-Tube one day after talking to Patricia about it the first time and now they can't get it scheduled and coordinated with the circumcision. It makes no sense and we're getting very frustrated. No one seems to have any answers right now. It looks like nothing is going to happen on Wednesday either at this point.
Monday, April 26, 2010
04/26/10 Monday Blues
After a relatively uneventful weekend I made it into the hospital around 5:30pm Monday evening. Late last week we asked Seattle Children's to schedule the G-Tube surgery for Eli. We were told it would happen Tuesday. All weekend we've been asking if the surgery was scheduled and if we had a time for Tuesday. As I arrive at the hospital the first thing on my mind is to find out when are we due in surgery tomorrow. Patricia's been asking all day and the answer remains the same, we don't know yet. How can we not know when the surgery is going to take place? It's 5:30pm on Monday! Apparently we're waiting on a consultation from the urology department regarding our desire to have Eli circumcised while they have him under general anesthesia.
When I arrive at the hospital I find a trio of doctors looking Eli over. The three doctors are from the hematology department. Eli's hematocrit has now fallen to 25.8 and the NICU doctors asked for a consult. It's nice to find out they ordered another consult for an issue we were told was resolved when I walk in to find three hematologists looking over my son. Chalk this up to one more issue where lack of communication is the norm. Now that I had a chance to speak with the hematologists I figured it would be a good time to get a few things figured out. Eli's hematocrit has fallen a little more but his retic count is increasing so the hematologists feel things are going in the right direction. All babies bottom out after birth around the 8 week mark. They feel like Eli is an exception because of the massive amount of blood that was drawn during his first few weeks of life. He is simply bottoming out later than normal.
As I mentioned previously, the kidneys actually play a significant role in red blood cell production. The kidney secretes erythropoietin (also known as EPO) when the body needs to increase red blood cell production. Usually the kidneys kick in when your oxygen level is low which stimulates red blood cell grown and red blood cells help carry oxygen through the blood stream. For example, people living at altitude usually have a higher hematocrit level than people living at sea level because the oxygen is thinner at the higher elevation. When you are on oxygen like Eli is the kidneys think everything is going ok and they don't secrete as much EPO to make new red blood cells and therefore his hematocrit level drops.
After I get done with the blood doctors I get a chance to speak with one of the residents to ask why we haven't scheduled the surgery yet. We are waiting on a consultation from urology. They need to come by to see Eli to determine which circumcision procedure they can do. Since it's already almost 6:00pm I come to the conclusion that we're not going to have the surgery tomorrow.
Not more than 15 minutes after my discussion with the resident I have 3 more visitors from urology. They quickly examine Eli and look through his chart and they all agree that they can do a local procedure with what is known as a plastibell. I won't describe the plastibell procedure; if you're curious and would like to know how it works feel free to go look it up on the internet. We had both Ian and Obie circumcised and Obie had the plastibell. Unfortunately the plastibell didn't work correctly on Obie and we had to have the circumcision corrected by a urologist about a month after he was born. I was a little skeptical about going the plastibell procedure on Eli but one of the urologists laughed and asked if Obie has the procedure done by a urologist. I said no. It was done by Patricia's OBGYN the day after he was born. I like doctors who are confident and I told them they could either do the normal procedure or the plastibell if they think they can go it right the first time. The doctor said they'd get it done right the first time. One of the nurses mentioned that Eli was going to be under general anesthesia and the urologist said they could do the circumcision either way then. I don't care one way or the other as long as we can get it done.
After the consultation with urology and hematology I was worn out. Eli had a pretty quiet night and seemed to settle in on the nasal pillows just fine. The doctors have told us they are trying to schedule the surgery for Wednesday now and they'll let us know as soon as they get it scheduled.
When I arrive at the hospital I find a trio of doctors looking Eli over. The three doctors are from the hematology department. Eli's hematocrit has now fallen to 25.8 and the NICU doctors asked for a consult. It's nice to find out they ordered another consult for an issue we were told was resolved when I walk in to find three hematologists looking over my son. Chalk this up to one more issue where lack of communication is the norm. Now that I had a chance to speak with the hematologists I figured it would be a good time to get a few things figured out. Eli's hematocrit has fallen a little more but his retic count is increasing so the hematologists feel things are going in the right direction. All babies bottom out after birth around the 8 week mark. They feel like Eli is an exception because of the massive amount of blood that was drawn during his first few weeks of life. He is simply bottoming out later than normal.
As I mentioned previously, the kidneys actually play a significant role in red blood cell production. The kidney secretes erythropoietin (also known as EPO) when the body needs to increase red blood cell production. Usually the kidneys kick in when your oxygen level is low which stimulates red blood cell grown and red blood cells help carry oxygen through the blood stream. For example, people living at altitude usually have a higher hematocrit level than people living at sea level because the oxygen is thinner at the higher elevation. When you are on oxygen like Eli is the kidneys think everything is going ok and they don't secrete as much EPO to make new red blood cells and therefore his hematocrit level drops.
After I get done with the blood doctors I get a chance to speak with one of the residents to ask why we haven't scheduled the surgery yet. We are waiting on a consultation from urology. They need to come by to see Eli to determine which circumcision procedure they can do. Since it's already almost 6:00pm I come to the conclusion that we're not going to have the surgery tomorrow.
Not more than 15 minutes after my discussion with the resident I have 3 more visitors from urology. They quickly examine Eli and look through his chart and they all agree that they can do a local procedure with what is known as a plastibell. I won't describe the plastibell procedure; if you're curious and would like to know how it works feel free to go look it up on the internet. We had both Ian and Obie circumcised and Obie had the plastibell. Unfortunately the plastibell didn't work correctly on Obie and we had to have the circumcision corrected by a urologist about a month after he was born. I was a little skeptical about going the plastibell procedure on Eli but one of the urologists laughed and asked if Obie has the procedure done by a urologist. I said no. It was done by Patricia's OBGYN the day after he was born. I like doctors who are confident and I told them they could either do the normal procedure or the plastibell if they think they can go it right the first time. The doctor said they'd get it done right the first time. One of the nurses mentioned that Eli was going to be under general anesthesia and the urologist said they could do the circumcision either way then. I don't care one way or the other as long as we can get it done.
After the consultation with urology and hematology I was worn out. Eli had a pretty quiet night and seemed to settle in on the nasal pillows just fine. The doctors have told us they are trying to schedule the surgery for Wednesday now and they'll let us know as soon as they get it scheduled.
Friday, April 23, 2010
04/23/10 What Goes Up Must Come Down
With Eli's CO2 levels holding stable on the new mask we're starting to talk about a plan to get to the floor and from there home. Our spirits have been flying pretty high lately despite the illness and Patricia's absence from the hospital. To her credit she has been calling the hospital 2 or 3 times a day to speak with the nurses whether I'm there or not! You can't hold back a mother's love or concern for her child!
I spent the morning at the hospital today then I went in to the office for a bunch of meetings. I got back to the hospital shortly after Eli's 6:00pm feeding. I was able to snuggle him for a little while and then it was time to get the mask back on and get the BiPAP fired up. By this time it was around 7:00pm and shift change for the nursing staff which delayed the BiPAP a little.
When the time came to get the BiPAP on Eli I knew we were going to have a problem. The Respiration Therapist (RT) was one of the guys who has been resistant to trying anything new and he hadn't been trained on the new mask. I had to show him how it went on and I worked with him to get Eli settled in. All I heard were complaints every time Eli turned his head and struggled to get out of the mask. The nurse wasn't much better. I don't know that we've ever had this particular nurse but she gave me the impression that she was more interested in chatting with her friends out by the nursing station than she was in watching over my son. In this case 1 caregiver + 1 caregiver = a big fat ZERO. I had been planning on leaving the hospital this evening shortly after we got Eli settled in for the night. I haven't had a lot of time to see Ian and Obie lately and I wanted to spend a little time with them tonight. I just didn't feel comfortable leaving Eli tonight and I was more than a little pissed off by the time I did leave. We're sitting in the NICU. That means "Intensive Care". Tonight I felt like we were straddled with two people who weren't all that interested in putting in the effort to support Eli because it's hard. We know the cards are stacked against us in this regard. The hospital wants to cover it's butt and the caregivers want to cover their collective butts. Struggling all night with an infant who doesn't want to wear his BiPAP mask isn't my idea of a good time either but that's what they get paid to do. I feel like we have a lot of pressure to simply get the tracheostomy because it's the "easier" solution in terms of "caregiver effort" and trust me, not all caregivers are created equally. Some of them are absolutely fantastic and some of them are downright lousy. Tonight we get lousy and frankly I'm fed up with the lack of effort shown tonight.
By 11:00pm I'm so exhausted I can hardly keep my eyes open and I haven't seen the nurse in our room for the last hour and a half. I need to get going, Eli is settled in and sleeping and the nasal pillows seem to be sitting comfortably on his face right now. I've been keeping diligent watch but I need to get home to get some sleep. On my way out I see our nurse chatting with a couple other nurses at the nursing station so I stop to inform her that I'm leaving. I tell her that I expect them to continue using the nasal pillows tonight and there's no excuse for not making it work. I say it loud enough and forceful enough that just about all the other people on the ward can hear me. If I have to be an ass then I'll be an ass. She assures me they will keep an eye on him. Yeah right just like the last 2 hours. I ask her to keep an eye on him to make sure he isn't desaturating too and she assures me that they have monitors out at the nursing station too. Whatever. I'm beat, I've said my peace, and I've been loud about it so they better make it work or there will be hell to pay tomorrow. Consider my spirit deflated.
I spent the morning at the hospital today then I went in to the office for a bunch of meetings. I got back to the hospital shortly after Eli's 6:00pm feeding. I was able to snuggle him for a little while and then it was time to get the mask back on and get the BiPAP fired up. By this time it was around 7:00pm and shift change for the nursing staff which delayed the BiPAP a little.
When the time came to get the BiPAP on Eli I knew we were going to have a problem. The Respiration Therapist (RT) was one of the guys who has been resistant to trying anything new and he hadn't been trained on the new mask. I had to show him how it went on and I worked with him to get Eli settled in. All I heard were complaints every time Eli turned his head and struggled to get out of the mask. The nurse wasn't much better. I don't know that we've ever had this particular nurse but she gave me the impression that she was more interested in chatting with her friends out by the nursing station than she was in watching over my son. In this case 1 caregiver + 1 caregiver = a big fat ZERO. I had been planning on leaving the hospital this evening shortly after we got Eli settled in for the night. I haven't had a lot of time to see Ian and Obie lately and I wanted to spend a little time with them tonight. I just didn't feel comfortable leaving Eli tonight and I was more than a little pissed off by the time I did leave. We're sitting in the NICU. That means "Intensive Care". Tonight I felt like we were straddled with two people who weren't all that interested in putting in the effort to support Eli because it's hard. We know the cards are stacked against us in this regard. The hospital wants to cover it's butt and the caregivers want to cover their collective butts. Struggling all night with an infant who doesn't want to wear his BiPAP mask isn't my idea of a good time either but that's what they get paid to do. I feel like we have a lot of pressure to simply get the tracheostomy because it's the "easier" solution in terms of "caregiver effort" and trust me, not all caregivers are created equally. Some of them are absolutely fantastic and some of them are downright lousy. Tonight we get lousy and frankly I'm fed up with the lack of effort shown tonight.
By 11:00pm I'm so exhausted I can hardly keep my eyes open and I haven't seen the nurse in our room for the last hour and a half. I need to get going, Eli is settled in and sleeping and the nasal pillows seem to be sitting comfortably on his face right now. I've been keeping diligent watch but I need to get home to get some sleep. On my way out I see our nurse chatting with a couple other nurses at the nursing station so I stop to inform her that I'm leaving. I tell her that I expect them to continue using the nasal pillows tonight and there's no excuse for not making it work. I say it loud enough and forceful enough that just about all the other people on the ward can hear me. If I have to be an ass then I'll be an ass. She assures me they will keep an eye on him. Yeah right just like the last 2 hours. I ask her to keep an eye on him to make sure he isn't desaturating too and she assures me that they have monitors out at the nursing station too. Whatever. I'm beat, I've said my peace, and I've been loud about it so they better make it work or there will be hell to pay tomorrow. Consider my spirit deflated.
Thursday, April 22, 2010
04/22/10 Another Good Night
I worked from the hospital today and got to spend some good time with Eli. I arrive at the hospital around 8:30 in the morning and I've been leaving after Eli's 9:00pm feeding so it makes for a long day but at least I'm here watching over him so nothing bad happens.
After the little SNAFU with the surgery thing yesterday I've been a little more vocal about making sure the doctors consult us on everything. It seems like we have to have these conversations every 4 weeks or so because we had a similar discussion around the end of February and then another one around the end of March and now we're nearing the end of April and sure enough, we need to address the issue again.
Last night Eli spent the whole night on the nasal pillows and his CO2 level was a 51. We're quickly showing that with a little effort and some ingenuity we can keep his CO2 level down and all of this is being done on a machine that we could potentially go home on.
After I got home for the evening Patricia and I sat down to discuss what we want to have done in terms of this surgery. It was a long hard discussion but I think we're resolved to move forward with the G-Tube. We're going to find out if we can get Eli circumcised at the same time so we don't have to go through anesthesia again in the short term. We're going to ask them to schedule the surgery next week so both Patricia and I can be available for it. Tuesday or Wednesday are looking pretty good right now but we'll see what they can schedule. Waiting will give us some time for Patricia to get over her cold and it will give us a little more time to see if the nasal pillows are going to work. The last thing we want to do is put Eli through this and then have to get a tracheostomy a few weeks later.
At Round this morning I informed the doctors that we will consent to having the G-Tube placed and I laid out our thoughts in terms of getting the circumcision done at the same time. The NICU team thought that was a great idea and they floated a couple more tests they want us to consider. They would like to perform a muscle biopsy and they want to take some spinal fluid to look at Eli's neuro-receptors. Both of these tests were mentioned in the past but neither was ranked very highly in terms of diagnostic value.
A muscle biopsy is a procedure in which a piece of muscle tissue is removed and examined microscopically. A biopsy needle is usually inserted into a muscle and when extracted, a small amount of tissue remains. A muscle biopsy can lead to the discovery of problems with a nervous system, connective tissue, vascular system, or musculoskeletal system. With weakness and low muscle tone, a muscle biopsy can help distinguish between myopathies (where the pathology is in the muscle tissue itself) and neuropathies (where the pathology is at the nerves innervating those muscles). Muscle biopsies can also help to distinguish among various types of myopathies. The thing to keep in mind is that a muscle biopsy is usually a first step. If they encounter irregularities in the muscle tissue then you usually need to follow that up with further genetic testing.
The other test is kind of a shot in the dark but it isn't as invasive as the muscle biopsy. They are looking to see if Eli has a sufficient number of neuro-receptors in his spinal fluid. Much like the muscle biopsy this isn't a definitive test either. If they take some fluid and find out that Eli has a lower than normal level of neuro-receptors then we have one more clue to the problem but still no answers.
On the surface these two new tests they are proposing don't sound too back but I need to spend some time looking into why we need them. The less they have to do to Eli the better.
After the little SNAFU with the surgery thing yesterday I've been a little more vocal about making sure the doctors consult us on everything. It seems like we have to have these conversations every 4 weeks or so because we had a similar discussion around the end of February and then another one around the end of March and now we're nearing the end of April and sure enough, we need to address the issue again.
Last night Eli spent the whole night on the nasal pillows and his CO2 level was a 51. We're quickly showing that with a little effort and some ingenuity we can keep his CO2 level down and all of this is being done on a machine that we could potentially go home on.
After I got home for the evening Patricia and I sat down to discuss what we want to have done in terms of this surgery. It was a long hard discussion but I think we're resolved to move forward with the G-Tube. We're going to find out if we can get Eli circumcised at the same time so we don't have to go through anesthesia again in the short term. We're going to ask them to schedule the surgery next week so both Patricia and I can be available for it. Tuesday or Wednesday are looking pretty good right now but we'll see what they can schedule. Waiting will give us some time for Patricia to get over her cold and it will give us a little more time to see if the nasal pillows are going to work. The last thing we want to do is put Eli through this and then have to get a tracheostomy a few weeks later.
At Round this morning I informed the doctors that we will consent to having the G-Tube placed and I laid out our thoughts in terms of getting the circumcision done at the same time. The NICU team thought that was a great idea and they floated a couple more tests they want us to consider. They would like to perform a muscle biopsy and they want to take some spinal fluid to look at Eli's neuro-receptors. Both of these tests were mentioned in the past but neither was ranked very highly in terms of diagnostic value.
A muscle biopsy is a procedure in which a piece of muscle tissue is removed and examined microscopically. A biopsy needle is usually inserted into a muscle and when extracted, a small amount of tissue remains. A muscle biopsy can lead to the discovery of problems with a nervous system, connective tissue, vascular system, or musculoskeletal system. With weakness and low muscle tone, a muscle biopsy can help distinguish between myopathies (where the pathology is in the muscle tissue itself) and neuropathies (where the pathology is at the nerves innervating those muscles). Muscle biopsies can also help to distinguish among various types of myopathies. The thing to keep in mind is that a muscle biopsy is usually a first step. If they encounter irregularities in the muscle tissue then you usually need to follow that up with further genetic testing.
The other test is kind of a shot in the dark but it isn't as invasive as the muscle biopsy. They are looking to see if Eli has a sufficient number of neuro-receptors in his spinal fluid. Much like the muscle biopsy this isn't a definitive test either. If they take some fluid and find out that Eli has a lower than normal level of neuro-receptors then we have one more clue to the problem but still no answers.
On the surface these two new tests they are proposing don't sound too back but I need to spend some time looking into why we need them. The less they have to do to Eli the better.
Wednesday, April 21, 2010
04/21/10 Surgery Say What?
Patricia is super sick now. Whatever nasty bug I had has been passed on to Patricia despite our best efforts to quarantine her from the illness. If your home and the kids are sick I guess you're going to get some of the germs no matter what you do.
Patricia getting sick is about the worst thing that could happen to us right about now. I'm trying to get back to a more normal work schedule and Patricia has been pulling the all day shifts with Eli. During the week Ian and Obie are staying with one of our wonderful neighbors or with Grandma, otherwise known as my Mom. While not ideal this situation has been working out well for us given the difficult circumstances we're dealing with. Now that Patricia is sick Eli is being left unattended during the day which makes me very nervous. Some of the nurses at Seattle Children's are absolute Angels and some are not. We've been blessed with a fairly regular nurse named Cassandra who watches over Eli most of the time. The nurses usually work 3 twelve hour shifts then they are off for a few days. Fortunately Cassandra is on Monday through Wednesday this week and we've felt good about leaving Eli there on his own. Thursday and Friday give me heartburn though. I'm going to try working from the hospital as much as I can this week so Eli has a parent and guardian present for as much time as possible.
Why do we need to have a parent or guardian present as much as possible you ask? Let me tell you. Today I arrived at the hospital shortly after 2:00pm. Eli had a fantastic night. They actually kept him on the nasal pillows all night and his CO2 level is a 56. At 3:00pm Eli is due for a bottle feed so I put up my laptop for a few minutes and get settled in to feed him. He usually takes the bottle over 10 to 15 minutes. Eli's about half way into the bottle when a doctor in surgical scrubs comes in to talk to me about anesthesia for Eli's surgery tomorrow. Say what? Surgery? What's going on here? Somehow the doctors scheduled Eli to get a G-Tube put in tomorrow! The doctor runs down the list of questions and starts to explain the risks of anesthesia to me. There's relatively low risk but anytime you put someone to sleep there's a chance that something could happen. Something bad. The shock of finding out they had scheduled Eli for surgery without consulting us was almost too much for me. I probably looked pretty grim because the doctor stopped in the middle of her spiel and asked if I was ok. I politely told her there wasn't going to be a surgery tomorrow. We just started discussing the G-Tube procedure and we had some other things to think about before we consent to a surgery. This whole situation is a total nightmare.
After the doctor left I called Patricia at home to make sure she didn't inadvertently schedule a surgery. Nope. I'm not sure how these things happen but I'm starting to believe all the stories about people going in for an amputation and ending up having the wrong arm taken off.
Needless to say I had a discussion with one of the NICU doctors and expressed my concerns about scheduling a surgery for Eli without our consent. It just makes me nervous to leave Eli unattended and this type of crap is the reason why.
Later in the evening I give Eli his 6:00pm bottle and then I wait for the respiration therapist to come in and put Eli back on the BiPAP. By 7:00pm I start asking around. Apparently they still haven't changed the orders in the computer and Eli is still scheduled to be put back on BiPAP after his 9:00pm feeding. I quickly correct them and get them in to put the BiPAP on Eli. This is just one more example of the oversight that's needed to keep Eli moving forward and toward home.
Patricia getting sick is about the worst thing that could happen to us right about now. I'm trying to get back to a more normal work schedule and Patricia has been pulling the all day shifts with Eli. During the week Ian and Obie are staying with one of our wonderful neighbors or with Grandma, otherwise known as my Mom. While not ideal this situation has been working out well for us given the difficult circumstances we're dealing with. Now that Patricia is sick Eli is being left unattended during the day which makes me very nervous. Some of the nurses at Seattle Children's are absolute Angels and some are not. We've been blessed with a fairly regular nurse named Cassandra who watches over Eli most of the time. The nurses usually work 3 twelve hour shifts then they are off for a few days. Fortunately Cassandra is on Monday through Wednesday this week and we've felt good about leaving Eli there on his own. Thursday and Friday give me heartburn though. I'm going to try working from the hospital as much as I can this week so Eli has a parent and guardian present for as much time as possible.
Why do we need to have a parent or guardian present as much as possible you ask? Let me tell you. Today I arrived at the hospital shortly after 2:00pm. Eli had a fantastic night. They actually kept him on the nasal pillows all night and his CO2 level is a 56. At 3:00pm Eli is due for a bottle feed so I put up my laptop for a few minutes and get settled in to feed him. He usually takes the bottle over 10 to 15 minutes. Eli's about half way into the bottle when a doctor in surgical scrubs comes in to talk to me about anesthesia for Eli's surgery tomorrow. Say what? Surgery? What's going on here? Somehow the doctors scheduled Eli to get a G-Tube put in tomorrow! The doctor runs down the list of questions and starts to explain the risks of anesthesia to me. There's relatively low risk but anytime you put someone to sleep there's a chance that something could happen. Something bad. The shock of finding out they had scheduled Eli for surgery without consulting us was almost too much for me. I probably looked pretty grim because the doctor stopped in the middle of her spiel and asked if I was ok. I politely told her there wasn't going to be a surgery tomorrow. We just started discussing the G-Tube procedure and we had some other things to think about before we consent to a surgery. This whole situation is a total nightmare.
After the doctor left I called Patricia at home to make sure she didn't inadvertently schedule a surgery. Nope. I'm not sure how these things happen but I'm starting to believe all the stories about people going in for an amputation and ending up having the wrong arm taken off.
Needless to say I had a discussion with one of the NICU doctors and expressed my concerns about scheduling a surgery for Eli without our consent. It just makes me nervous to leave Eli unattended and this type of crap is the reason why.
Later in the evening I give Eli his 6:00pm bottle and then I wait for the respiration therapist to come in and put Eli back on the BiPAP. By 7:00pm I start asking around. Apparently they still haven't changed the orders in the computer and Eli is still scheduled to be put back on BiPAP after his 9:00pm feeding. I quickly correct them and get them in to put the BiPAP on Eli. This is just one more example of the oversight that's needed to keep Eli moving forward and toward home.
Tuesday, April 20, 2010
04/20/10 Test Results
Today we got word that the PHOX2B gene sequencing we've been waiting on came back normal. This means that Eli does not have Congenital Central Hypoventilation Syndrome. Any test result that comes back normal is a relief but the lack of answers is very frustrating. We can cross one more thing off the list and move on into the unknown. We have no more tests outstanding. Eli has had the million dollar work up and at this point we may never end up with a diagnosis.
We had a meeting at the hospital this morning to discuss getting a gastric feeding tube for Eli. Eli has been taking bottle feeds 3 or 4 times a day. We're working on giving Eli 30CC's with each bottle feeding. It really depends on how awake he is for each feed but in general he's doing well with the bottle feeds. Eli is getting a total of 150CC's of breast milk or formula every 3 hours so we still need to give him 120CC's via the feeding tube when he takes his entire bottle. He still has the NG tube (nasogastric tube) in to facilitate the feeding but NG tubes are intended to be a temporary measure. After a couple months you really need to start looking at longer term alternatives if you still need this type of support.
A gastric feeding tube, also known as a "G-tube" or a "button" is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. Eli had an upper gastrointestinal examination today and we're looking at a type of G-tube called the percutaneous endoscopic gastrostomy (PEG) tube. It is placed endoscopically. The patient is sedated, and an endoscope is passed through the mouth and esophagus and down into the stomach. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube.
This type of feeding tube will be a more permanent solution and will allow us to feed Eli without worrying about an NG tube interfering with the fit of his respiratory masks. We still have some more research to do and we need to have a couple more discussions with the doctors before we move forward with this new feeding tube but we're leaning in this direction.
Eli's CO2 has been up and down lately. I think a lot of it has to do with how Eli is being supported in terms of masks, quality of care, and his schedule on and off the BiPAP. Last night they finally got the new nasal pillows to work for the entire night and they took a blood gas this morning. Eli's CO2 was down to 54 so it's much improved over the mini mask they were trying to use.
They also weighed Eli again today. I heard they had some questions about the weight reading from last night so in the afternoon Patricia and the nurse stripped Eli down and weighed him. He's a solid 7.0 kg or roughly 15.4 lbs. After discussing things with the nutritionist they've decided to maintain Eli's feeds and calorie count. I think he's getting a little chunky so they're not going to advance his feeding anymore right now.
We had a meeting at the hospital this morning to discuss getting a gastric feeding tube for Eli. Eli has been taking bottle feeds 3 or 4 times a day. We're working on giving Eli 30CC's with each bottle feeding. It really depends on how awake he is for each feed but in general he's doing well with the bottle feeds. Eli is getting a total of 150CC's of breast milk or formula every 3 hours so we still need to give him 120CC's via the feeding tube when he takes his entire bottle. He still has the NG tube (nasogastric tube) in to facilitate the feeding but NG tubes are intended to be a temporary measure. After a couple months you really need to start looking at longer term alternatives if you still need this type of support.
A gastric feeding tube, also known as a "G-tube" or a "button" is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. Eli had an upper gastrointestinal examination today and we're looking at a type of G-tube called the percutaneous endoscopic gastrostomy (PEG) tube. It is placed endoscopically. The patient is sedated, and an endoscope is passed through the mouth and esophagus and down into the stomach. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube.
This type of feeding tube will be a more permanent solution and will allow us to feed Eli without worrying about an NG tube interfering with the fit of his respiratory masks. We still have some more research to do and we need to have a couple more discussions with the doctors before we move forward with this new feeding tube but we're leaning in this direction.
Eli's CO2 has been up and down lately. I think a lot of it has to do with how Eli is being supported in terms of masks, quality of care, and his schedule on and off the BiPAP. Last night they finally got the new nasal pillows to work for the entire night and they took a blood gas this morning. Eli's CO2 was down to 54 so it's much improved over the mini mask they were trying to use.
They also weighed Eli again today. I heard they had some questions about the weight reading from last night so in the afternoon Patricia and the nurse stripped Eli down and weighed him. He's a solid 7.0 kg or roughly 15.4 lbs. After discussing things with the nutritionist they've decided to maintain Eli's feeds and calorie count. I think he's getting a little chunky so they're not going to advance his feeding anymore right now.
Sunday, April 18, 2010
04/18/10 Retic Normal
Monday is generally lab day. They draw some blood and run tests to make sure everything is going well. Eli's CO2's have been high, running in the 68 range for the last couple days. We finally and firmly insisted that we go back to more respiratory support on the nasal pillows instead of leaving Eli off support for 13 hours a day. "Mean" Patricia made an appearance today and she let the doctors know that we expect them to use the nasal pillows tonight. I think they got the message.
They also looked at the hematocrit level and it was up a little which was good news. Eli's retic count was also up. I'm not sure what a normal range is but it sounds like Eli's body is starting to react to the drop in his hematocrit level. He is producing new red blood cells and hopefully this means we can stop worrying about this issue finally.
This Sunday was beautiful in Seattle. Patricia had an opportunity to take Eli for a little walk around the Seattle Children's campus. I've attached a couple pictures of their adventure.
They also looked at the hematocrit level and it was up a little which was good news. Eli's retic count was also up. I'm not sure what a normal range is but it sounds like Eli's body is starting to react to the drop in his hematocrit level. He is producing new red blood cells and hopefully this means we can stop worrying about this issue finally.
This Sunday was beautiful in Seattle. Patricia had an opportunity to take Eli for a little walk around the Seattle Children's campus. I've attached a couple pictures of their adventure.
Saturday, April 17, 2010
04/17/10 Hematocrit Again
Over the weekend we became aware of yet one more issue. It looks like Eli's hematocrit level is dropping off again. If you recall from earlier in the blog we had Eli transfused because his hematocrit level was so low. He was down to a hematocrit level of about 22 and he peaked after the transfusion around 38 before finally settling into a very normal 32 or so. Eli's hematocrit has fallen back to about 27.5 now. After discussing it with some of the doctors we learned that this is somewhat normal but it bears watching.
When you get pumped full of red blood cells from donor blood your body says, "Whoa! We got a lot of red blood cells here!" and you stop producing new red blood cells. The production rate is called your reticulocyte count which represents the number of immature red blood cells in a sample of blood. It is commonly called the retic count. Eli's retic count is very low which is consistent with what the doctors have told us is happening. When your hematocrit level drops down after a transfusion your retic count should start to come back up again and you should be able to maintain a healthy hematocrit level. In Eli's case we just need to watch to make sure his retic count increases and his hematocrit level remains at a normal level.
Normally this type of thing wouldn't be a big deal but it's weighing on me. Every time we feel like we've put a problem behind us something pops back up again as it did with the hematocrit level. We're definitely going to follow this to make sure Eli stays in the normal range but it sure would be nice to take something off the table so we have a little less to worry about.
When you get pumped full of red blood cells from donor blood your body says, "Whoa! We got a lot of red blood cells here!" and you stop producing new red blood cells. The production rate is called your reticulocyte count which represents the number of immature red blood cells in a sample of blood. It is commonly called the retic count. Eli's retic count is very low which is consistent with what the doctors have told us is happening. When your hematocrit level drops down after a transfusion your retic count should start to come back up again and you should be able to maintain a healthy hematocrit level. In Eli's case we just need to watch to make sure his retic count increases and his hematocrit level remains at a normal level.
Normally this type of thing wouldn't be a big deal but it's weighing on me. Every time we feel like we've put a problem behind us something pops back up again as it did with the hematocrit level. We're definitely going to follow this to make sure Eli stays in the normal range but it sure would be nice to take something off the table so we have a little less to worry about.
Friday, April 16, 2010
04/16/10 Friday Ruminations
Thursday and Friday were fairly long days for me work wise so I didn't get to spend any time with Eli. Patricia has been the steady presence at the hospital lately. She told me today that we got the official results back from the sleep study. The results weren't a total surprise. Eli is doing better. I think she mentioned that he is having roughly 14 apnea spells an hour now instead of the 70+ he was having on some of the prior sleep studies.
There were a couple new things that came out of the sleep study. For one, they didn't complete the sleep study on the new nasal pillows; instead they used the mini mask which isn't a fantastic fit. This didn't make us happy at all. One of the reasons we agreed to doing a "third" sleep study was to see how well the nasal pillows and the home care BiPAP machine would work for Eli. You could call this a trial run for getting us to the floor. The fact that they didn't use the nasal pillows is very frustrating as is the reason they didn't use them. After working with one of the respiratory therapists and Dr. Mackris, our appointed pulmonologist and resident sleep expert, they got the nasal pillows working. When the night crew came on and they went to put the nasal pillows on Eli, despite the very detailed instructions left by the respiratory therapist and the doctor, they couldn't figure out how to get a good seal on the prongs. Patricia and I lightly refer to this as a "lack of effort" and it's simply galling because we're sitting here in the NICU and we're supposed to be getting top notch care 24 hours a day. How one team of people can make it work and the next team can't is beyond my comprehension.
The other thing that's changed is Eli's schedule. He is now going to be off BiPAP and on regular nasal cannula for 12 to 13 hours a day. Why this decision was made is still a little baffling. When we discussed it with the hospital staff we were quick to point out that we went down that road before and leaving him off respiratory support only results in his CO2 level creeping higher and higher. You'd think they'd have figured out some of this after over 2 months but we have to be the constant watch dog and guardian over Eli. Now I'm starting to feel guilty for missing so much time with Eli. Patricia is with him all day long but even she needs a break and that has left Eli without someone to care (provide oversight) for him about 12 to 14 hours a day.
Finally, the last thing the sleep study told us that we didn't know is that Eli is still experiencing some oxygen desaturations when he is on the BiPAP. When he is on the BiPAP he is getting normal room air blown through the mask. This has been good enough to keep his oxygen saturation up according to the pulse oximeter they have hooked to Eli all the time. According to the sleep study Eli has some desaturations that are not being captured by the normal hospital equipment. The sleep study probes and machines are a lot more sensitive and give a more accurate readying so they could tell when he was having these mini-desaturations that were not being picked up on the regular probe. The net result, Eli will now be on 30% oxygen when he is on the BiPAP. This provides him with a little extra cushion and helps him maintain his oxygen saturation.
There were a couple new things that came out of the sleep study. For one, they didn't complete the sleep study on the new nasal pillows; instead they used the mini mask which isn't a fantastic fit. This didn't make us happy at all. One of the reasons we agreed to doing a "third" sleep study was to see how well the nasal pillows and the home care BiPAP machine would work for Eli. You could call this a trial run for getting us to the floor. The fact that they didn't use the nasal pillows is very frustrating as is the reason they didn't use them. After working with one of the respiratory therapists and Dr. Mackris, our appointed pulmonologist and resident sleep expert, they got the nasal pillows working. When the night crew came on and they went to put the nasal pillows on Eli, despite the very detailed instructions left by the respiratory therapist and the doctor, they couldn't figure out how to get a good seal on the prongs. Patricia and I lightly refer to this as a "lack of effort" and it's simply galling because we're sitting here in the NICU and we're supposed to be getting top notch care 24 hours a day. How one team of people can make it work and the next team can't is beyond my comprehension.
The other thing that's changed is Eli's schedule. He is now going to be off BiPAP and on regular nasal cannula for 12 to 13 hours a day. Why this decision was made is still a little baffling. When we discussed it with the hospital staff we were quick to point out that we went down that road before and leaving him off respiratory support only results in his CO2 level creeping higher and higher. You'd think they'd have figured out some of this after over 2 months but we have to be the constant watch dog and guardian over Eli. Now I'm starting to feel guilty for missing so much time with Eli. Patricia is with him all day long but even she needs a break and that has left Eli without someone to care (provide oversight) for him about 12 to 14 hours a day.
Finally, the last thing the sleep study told us that we didn't know is that Eli is still experiencing some oxygen desaturations when he is on the BiPAP. When he is on the BiPAP he is getting normal room air blown through the mask. This has been good enough to keep his oxygen saturation up according to the pulse oximeter they have hooked to Eli all the time. According to the sleep study Eli has some desaturations that are not being captured by the normal hospital equipment. The sleep study probes and machines are a lot more sensitive and give a more accurate readying so they could tell when he was having these mini-desaturations that were not being picked up on the regular probe. The net result, Eli will now be on 30% oxygen when he is on the BiPAP. This provides him with a little extra cushion and helps him maintain his oxygen saturation.
Wednesday, April 14, 2010
04/14/10 Sleep Study Three
Today was my first day back visiting with Eli after being sick. Patricia and I decided it would be better if I stayed away for a few days while I recovered from my cold. I sure have missed the little guy. We snuggled from the time I got off work until they were ready to start hooking him up to the electrodes for the sleep study.
After our last care conference the pulmonary team decided they'd like to do another sleep study but this time using the new nasal pillows we brought in for Eli. Like the other two sleep studies we've had the process is very labor intensive. The technician was in the room getting set up around 7:00pm and by 9:00pm they were ready to start. I left the hospital shortly after the 9:00pm feeding so I didn't get to stay for the sleep study this time around. I've lived through two of them so far and it's a marathon event. We'll have to wait to see what the results are tomorrow but we're hoping the new mask will help out.
After our last care conference the pulmonary team decided they'd like to do another sleep study but this time using the new nasal pillows we brought in for Eli. Like the other two sleep studies we've had the process is very labor intensive. The technician was in the room getting set up around 7:00pm and by 9:00pm they were ready to start. I left the hospital shortly after the 9:00pm feeding so I didn't get to stay for the sleep study this time around. I've lived through two of them so far and it's a marathon event. We'll have to wait to see what the results are tomorrow but we're hoping the new mask will help out.
Sunday, April 11, 2010
04/11/10 Another Sunday
This morning I'm starting to feel a little better. I got some antibiotics from the doctor yesterday and my eyes are no longer swelling shut so I'll take that as a good sign.
Patricia is still holding down the fort with Eli. I know it's been tough on her the last few days because she hasn't been spending as much time with Ian and Obie as she usually would, especially over the weekend. I'm really missing Eli too. It's been hard on me knowing we don't have anyone sitting with him because I'm sick but Patricia said one of the nurses was holding him when she got to the hospital the other day. The nurses in the NICU have been pretty amazing and at least we know Eli's in good hands while he's there.
Eli has been stable with his CO2 holding in the high 50's for the last several days. He is on regular oxygen through a nasal cannula for 8 hours a day and the rest of the time he is on the BiPAP. This combination seems to be working fairly well but it still isn't a combination what will allow us to take Eli home. There is some hope that we might have some new solutions to try out on Eli and I'm hoping to write of these during the week but so far none of them have materialized yet. We'll just have to wait to see what the week brings.
Patricia is still holding down the fort with Eli. I know it's been tough on her the last few days because she hasn't been spending as much time with Ian and Obie as she usually would, especially over the weekend. I'm really missing Eli too. It's been hard on me knowing we don't have anyone sitting with him because I'm sick but Patricia said one of the nurses was holding him when she got to the hospital the other day. The nurses in the NICU have been pretty amazing and at least we know Eli's in good hands while he's there.
Eli has been stable with his CO2 holding in the high 50's for the last several days. He is on regular oxygen through a nasal cannula for 8 hours a day and the rest of the time he is on the BiPAP. This combination seems to be working fairly well but it still isn't a combination what will allow us to take Eli home. There is some hope that we might have some new solutions to try out on Eli and I'm hoping to write of these during the week but so far none of them have materialized yet. We'll just have to wait to see what the week brings.
Friday, April 9, 2010
04/09/10 Parent Conference
Today we had a chance to meet with one of the tracheotomy home care specialists to go over all our questions regarding a tracheotomy. We got to examine some of the actual tracheotomy tubes and the nurse explained how they work. We got some literature and diagrams but mostly we got a lot of questions answered.
The actual procedure is about 30 minutes. From there you have about 6 or 7 days of recovery time in the NICU to make sure the stoma (tracheotomy hole) has healed. During that 6 or 7 days we would figure out what level of support Eli would need from a respiratory standpoint. Assuming everything is looking good at that point we would be moved down to the floor to the pulmonary care wing. Eli would continue to be cared for while we go through the steps and processes we need to complete for training and to prepare our home for Eli. We would need to arrange for home nursing care, make sure there's a good environment for Eli (he already has his own room), and we would need to make sure we have adequate electrical service to his room if he needs to be on a ventilator or other equipment.
In terms of training, there is a list of skills about a half a page long that we would need to master before we could bring him home. These skills include replacing the tracheotomy tube, suctioning the tube, cleaning the stoma site, handling any equipment Eli is on, etc... It's a very comprehensive list. Training is handled in 2 hour increments which we could try to schedule out so I could participate. Unfortunately all of the training happens during business hours from 9:00 to 5:00 so I'll need to take a couple hours off work for each training session. In total there are about 20 or so hours of official training that needs to take place. The real training is when you actually perform these tasks at the bedside on a daily basis. We've already learned some things, like how to change Eli's feeding tube and give him feeds using the home care feeding pumps and we learned that mostly through observation. I'm confident that we will pick up the training without any problems.
Patricia is still staying with Eli in the evenings but she is coming home around 8:00 or 9:00pm so she can be home when the boys wake up in the morning. I worked Thursday and Friday but my eyes are really bothering me and by the time we finish with the parent conference Friday evening my eyes are starting to swell. By early evening it's clear that my eyes are infected with something so I've got a head cold, sinus problems, and my eyes are swollen and filled with gunk. This is what I like to sarcastically refer to as "good times". I'm planning on visiting the doctor's office again tomorrow morning to see if we can't get some of these problems cleared up.
The actual procedure is about 30 minutes. From there you have about 6 or 7 days of recovery time in the NICU to make sure the stoma (tracheotomy hole) has healed. During that 6 or 7 days we would figure out what level of support Eli would need from a respiratory standpoint. Assuming everything is looking good at that point we would be moved down to the floor to the pulmonary care wing. Eli would continue to be cared for while we go through the steps and processes we need to complete for training and to prepare our home for Eli. We would need to arrange for home nursing care, make sure there's a good environment for Eli (he already has his own room), and we would need to make sure we have adequate electrical service to his room if he needs to be on a ventilator or other equipment.
In terms of training, there is a list of skills about a half a page long that we would need to master before we could bring him home. These skills include replacing the tracheotomy tube, suctioning the tube, cleaning the stoma site, handling any equipment Eli is on, etc... It's a very comprehensive list. Training is handled in 2 hour increments which we could try to schedule out so I could participate. Unfortunately all of the training happens during business hours from 9:00 to 5:00 so I'll need to take a couple hours off work for each training session. In total there are about 20 or so hours of official training that needs to take place. The real training is when you actually perform these tasks at the bedside on a daily basis. We've already learned some things, like how to change Eli's feeding tube and give him feeds using the home care feeding pumps and we learned that mostly through observation. I'm confident that we will pick up the training without any problems.
Patricia is still staying with Eli in the evenings but she is coming home around 8:00 or 9:00pm so she can be home when the boys wake up in the morning. I worked Thursday and Friday but my eyes are really bothering me and by the time we finish with the parent conference Friday evening my eyes are starting to swell. By early evening it's clear that my eyes are infected with something so I've got a head cold, sinus problems, and my eyes are swollen and filled with gunk. This is what I like to sarcastically refer to as "good times". I'm planning on visiting the doctor's office again tomorrow morning to see if we can't get some of these problems cleared up.
Wednesday, April 7, 2010
04/07/10 Out of Action
Everything has been progressing normally for Eli and we're still facing the same issues every day. How do we keep his CO2 down and get to a solution that will allow us to bring out little boy home.
Everything had been going fairly well for Patricia and I then I wake up this morning feeling like someone stuffed my sinuses full of cotton. Seems like I picked up a head cold somewhere along the way. I was just in to see my personal doctor on Monday to get some of my asthma prescriptions filled because we're getting into allergy season and I've been having some difficultly breathing lately. I should have known this was a precursor to getting sick. My asthma usually kicks in as my body starts to get run down fighting off a cold. Usually I don't notice anything different until the bug kicks me in the butt like it did this this morning. I spent the day sleeping while Patricia's sister took care of Ian and Obie and Patricia spent the day with Eli.
The issue we're now facing is how are we going to handle caring for everyone? I can't be around Eli if I'm sick and I'm sure the nurses and doctors would frown on it if I tried. Eli is in the NICU after all and the sick babies don't need to be exposed to another problem. That means Patricia is going to have to carry the torch when it comes to Eli for the next several days. Hopefully this cold doesn't hang on too long...
Everything had been going fairly well for Patricia and I then I wake up this morning feeling like someone stuffed my sinuses full of cotton. Seems like I picked up a head cold somewhere along the way. I was just in to see my personal doctor on Monday to get some of my asthma prescriptions filled because we're getting into allergy season and I've been having some difficultly breathing lately. I should have known this was a precursor to getting sick. My asthma usually kicks in as my body starts to get run down fighting off a cold. Usually I don't notice anything different until the bug kicks me in the butt like it did this this morning. I spent the day sleeping while Patricia's sister took care of Ian and Obie and Patricia spent the day with Eli.
The issue we're now facing is how are we going to handle caring for everyone? I can't be around Eli if I'm sick and I'm sure the nurses and doctors would frown on it if I tried. Eli is in the NICU after all and the sick babies don't need to be exposed to another problem. That means Patricia is going to have to carry the torch when it comes to Eli for the next several days. Hopefully this cold doesn't hang on too long...
Monday, April 5, 2010
04/05/10 Care Conference
Today we have a meeting with Pulmonary, Social Services, Home Care, and the NICU staff to look at alternatives for Eli's care. I've been pushing very hard for some answers or at least an alternative way of looking at things. I think the medical profession in general is lacking in creativity when it comes to "thinking outside the box".
By all accounts Eli is stable and doing well but he does require additional respiratory support. We're not sure if the CPAP/BiPAP is going to be able to provide that support for Eli in the short term due to equipment issues. The biggest challenge is the mask that Eli is quickly growing out of. For reasons I've already documented there doesn't seem to be an intermediate mask that will carry us over until Eli is big enough to fit into the mask that's approved for home care. The other issue I've been pushing to address is our need to stay in the very expensive NICU.
**Note Regarding Financial Issues**
We've had several people give us gifts over the last two months and a few people have even sent us cash. I'd like to thank everyone for their support. Patricia and I very much appreciate everything people have done and are doing for us and the level of compassion everyone has shown us is absolutely remarkable. If you want to support us and help Eli, Patricia and I want to respect your decision, but please understand we aren't asking for people to send us money. If you want to help and make a difference in our lives then please pray for us and pray for our little Eli. Our faith is strong but it's been difficult at times and we need compassion, kind words, and prayers more than we need money right now.
When I write about financial issues in my blog I'm trying to put things into context so people can understand the very real debate over health care reform that is going on in our country right now. I'm not advocating for or against health care reform. I've been fortunate in my career to work for great companies that have great benefits, including health insurance. In fact I've made it a point never to go uninsured even when unemployed. The cost of health care is staggering and my position as a controller with a couple different companies has given me the unique opportunity to see just how much private health insurance really costs. A lot of people make the conscious decision to go without health insurance because it can cost you a lot of money out of pocket each month. Weigh that against spending $10,000 a day in the NICU and going without insurance just doesn't add up.
Having said all that, some of the issues we're struggling with are financial but they are more related to our insurance coverage than anything else. Since we don't know what Eli's prognosis is I'm concerned with our ability to provide for Eli's needs *if* he should require long-term care. Most insurance policies have a lifetime maximum benefit to limit exposure and while my current medical insurance is extremely good I don't want to risk doing nothing now and end up short several years down the road. For example, if Eli is stable and doing well then why do we need to stay in the NICU? Wouldn't we be just as well off with Eli on the floor? We've been pushing for answers to these questions because I don't want to eat into Eli's lifetime maximum any more than we have to. We don't know what care Eli will need down the road or how expensive that care will be. Further, we don't know what impact the health care reform is going to have regarding our situation with Eli so we want to be as conservative as possible.
The answers to our questions, so far, have not been adequate. We've been told that it's "hospital policy" to have children on CPAP/BiPAP cared for in the NICU. We've been told that there have been exceptions before so we obviously we need to challenge that policy and the ultra conservative approach the hospital is taking. If there are no safety considerations then there's no reason we shouldn't push to get Eli admitted to the floor.
Getting back to the "Care Conference", we had an opportunity to question the doctors and experts about Eli's care this afternoon. Eli's primary issue is his ability to maintain an acceptable range of CO2. Off CPAP/BiPAP Eli's CO2 level increases until he is in the high 70's or low 80's. On CPAP/BiPAP we're able to maintain Eli's CO2 level in the 55 to 65 range. Neither of these options is acceptable for long-term care and neither option gets us any closer to taking Eli home. The only viable option at this point is the tracheostomy. While this option still scares the crap out of us I think we're coming to accept the inevitable conclusion that Eli needs to have the procedure done.
There is a lot that goes into a tracheostomy and I'm sure I'll be writing more about it in the future should we decide to move forward with this option. A tracheostomy is a procedure where they cut a small hole in the wind pipe and place a tracheotomy tube in the hole. The resulting tracheotomy allows breathing directly from the hole bypassing the soft tissues of the throat that are prone to collapse and obstruction. Additionally, the tracheotomy tube can be hooked up to a machine, either a CPAP/BiPAP type machine or a ventilator, with the tracheotomy forming a well sealed connection or circuit. From our discussions with the staff today we learned a lot more about this option but even if we decide to go down this path we're looking at another 6 to 8 weeks in the hospital. After discharge we would have a nurse in our home to help take care of Eli 16 hours a day until he is at least a year old.
We still have a lot of questions about Eli's care and we're still waiting for the CCHS gene sequencing which might help us make the decision to move forward with the tracheostomy should Eli test positive because then we'd know what we were facing. Not knowing what our future holds is the toughest part and I'm worried that we might be making a decision that sets Eli back more than it benefits him in the long run. It's so hard to know what the right decision is...
Patricia and I will be gathering more information regarding the tracheostomy this week and I'll do my best to put that information down in subsequent blogs.
By all accounts Eli is stable and doing well but he does require additional respiratory support. We're not sure if the CPAP/BiPAP is going to be able to provide that support for Eli in the short term due to equipment issues. The biggest challenge is the mask that Eli is quickly growing out of. For reasons I've already documented there doesn't seem to be an intermediate mask that will carry us over until Eli is big enough to fit into the mask that's approved for home care. The other issue I've been pushing to address is our need to stay in the very expensive NICU.
**Note Regarding Financial Issues**
We've had several people give us gifts over the last two months and a few people have even sent us cash. I'd like to thank everyone for their support. Patricia and I very much appreciate everything people have done and are doing for us and the level of compassion everyone has shown us is absolutely remarkable. If you want to support us and help Eli, Patricia and I want to respect your decision, but please understand we aren't asking for people to send us money. If you want to help and make a difference in our lives then please pray for us and pray for our little Eli. Our faith is strong but it's been difficult at times and we need compassion, kind words, and prayers more than we need money right now.
When I write about financial issues in my blog I'm trying to put things into context so people can understand the very real debate over health care reform that is going on in our country right now. I'm not advocating for or against health care reform. I've been fortunate in my career to work for great companies that have great benefits, including health insurance. In fact I've made it a point never to go uninsured even when unemployed. The cost of health care is staggering and my position as a controller with a couple different companies has given me the unique opportunity to see just how much private health insurance really costs. A lot of people make the conscious decision to go without health insurance because it can cost you a lot of money out of pocket each month. Weigh that against spending $10,000 a day in the NICU and going without insurance just doesn't add up.
Having said all that, some of the issues we're struggling with are financial but they are more related to our insurance coverage than anything else. Since we don't know what Eli's prognosis is I'm concerned with our ability to provide for Eli's needs *if* he should require long-term care. Most insurance policies have a lifetime maximum benefit to limit exposure and while my current medical insurance is extremely good I don't want to risk doing nothing now and end up short several years down the road. For example, if Eli is stable and doing well then why do we need to stay in the NICU? Wouldn't we be just as well off with Eli on the floor? We've been pushing for answers to these questions because I don't want to eat into Eli's lifetime maximum any more than we have to. We don't know what care Eli will need down the road or how expensive that care will be. Further, we don't know what impact the health care reform is going to have regarding our situation with Eli so we want to be as conservative as possible.
The answers to our questions, so far, have not been adequate. We've been told that it's "hospital policy" to have children on CPAP/BiPAP cared for in the NICU. We've been told that there have been exceptions before so we obviously we need to challenge that policy and the ultra conservative approach the hospital is taking. If there are no safety considerations then there's no reason we shouldn't push to get Eli admitted to the floor.
Getting back to the "Care Conference", we had an opportunity to question the doctors and experts about Eli's care this afternoon. Eli's primary issue is his ability to maintain an acceptable range of CO2. Off CPAP/BiPAP Eli's CO2 level increases until he is in the high 70's or low 80's. On CPAP/BiPAP we're able to maintain Eli's CO2 level in the 55 to 65 range. Neither of these options is acceptable for long-term care and neither option gets us any closer to taking Eli home. The only viable option at this point is the tracheostomy. While this option still scares the crap out of us I think we're coming to accept the inevitable conclusion that Eli needs to have the procedure done.
There is a lot that goes into a tracheostomy and I'm sure I'll be writing more about it in the future should we decide to move forward with this option. A tracheostomy is a procedure where they cut a small hole in the wind pipe and place a tracheotomy tube in the hole. The resulting tracheotomy allows breathing directly from the hole bypassing the soft tissues of the throat that are prone to collapse and obstruction. Additionally, the tracheotomy tube can be hooked up to a machine, either a CPAP/BiPAP type machine or a ventilator, with the tracheotomy forming a well sealed connection or circuit. From our discussions with the staff today we learned a lot more about this option but even if we decide to go down this path we're looking at another 6 to 8 weeks in the hospital. After discharge we would have a nurse in our home to help take care of Eli 16 hours a day until he is at least a year old.
We still have a lot of questions about Eli's care and we're still waiting for the CCHS gene sequencing which might help us make the decision to move forward with the tracheostomy should Eli test positive because then we'd know what we were facing. Not knowing what our future holds is the toughest part and I'm worried that we might be making a decision that sets Eli back more than it benefits him in the long run. It's so hard to know what the right decision is...
Patricia and I will be gathering more information regarding the tracheostomy this week and I'll do my best to put that information down in subsequent blogs.
Sunday, April 4, 2010
04/04/10 Easter Sunday
Today is Easter. Last night Patricia and I both spent the night at the house so we could be there in the morning when Ian and Obie woke up. Patricia's sister Mary and her son are staying with us through Easter. Mary has been a real blessing and we're very glad to have her help.
Easter morning the boys wake up a little too early. Ian wants to know if the Easter Bunny visited us last night. As we wander down stairs Obie is the first to find an Easter Egg left by the Easter Bunny. I guess he made his way to our house after all.
I've included some pictures of Obie finding the first egg and of Ian and Obie finding Obie's Easter Basket. Actually, Ian found Obie's basket first and then dragged his little brother over to the "hiding spot" so he (Ian) could see what the Easter Bunny had brought Obie. The Easter Bunny tends to hide Obie's basket a little more in the open so it's easier to find but that makes it easy prey for Ian. For some reason the Easter Bunny hasn't figured out how to deal with the age gap when hiding baskets so I'm taking suggestions for next year. What I mean to say is, I'm taking suggestions so I can write to the Easter Bunny to give him some new ideas for hiding the baskets. I just wanted to clear that up.
After all the eggs were uncovered, thanks in large part to the dog, Hopper, pointing the way, and all the baskets had been found, we packed everyone in the car and headed down to Seattle Children's Hospital to attend the morning mass.
The hospital has a small chapel and it was fairly busy this morning. The chapel has seating for about 25 people so it's a nice cozy setting. People are free to come to the chapel anytime they want to worship and they hold special services on days like Easter. The service was nice and it didn't last too long. Easter is a special celebration for anyone of the Christian faith but the moving part for me was the number of parents in the room. All of us are here in the hospital today celebrating Easter according to our faith and many of the people in the room have sick children in the hospital. Normally I'm not one to get overly sentimental about Sunday service but the "Sign of Peace" today was an especially moving moment for me. Welcoming strangers, sharing an embrace, and shaking hands with people going through the same emotions and dealing with similar circumstances made the event a touching and memorable occasion. It was definitely a service to be remembered and cherished.
After service we all went to visit with Eli. Last night was probably the longest we've left Eli alone since we've been in the hospital so I was getting a little anxious to go see him. Ian and Obie have been asking about "Brother Eli" as well and I'm getting the sense that they miss having their brother around. Obie still doesn't think we should bring baby Eli home though. Patricia dressed Eli up in his Sunday best and we managed to get a few pictures to share with everyone, including a special furry visitor who decided to perch right next to Eli for the photos. That Easter Bunny sure is a tricky little guy.
I stayed with Eli for most of the afternoon while Patricia and her sister took the boys back to the house. The rest of the day was pretty quiet and uneventful. Eli continues to do well as he slowly grows bigger and stronger but his breathing issues persist. We're hoping to get some answers this week and we have a "Care Conference" scheduled for Monday afternoon with Pulmonary to discuss options for Eli's on-going respiratory care.
God Bless and Happy Easter!
Easter morning the boys wake up a little too early. Ian wants to know if the Easter Bunny visited us last night. As we wander down stairs Obie is the first to find an Easter Egg left by the Easter Bunny. I guess he made his way to our house after all.
I've included some pictures of Obie finding the first egg and of Ian and Obie finding Obie's Easter Basket. Actually, Ian found Obie's basket first and then dragged his little brother over to the "hiding spot" so he (Ian) could see what the Easter Bunny had brought Obie. The Easter Bunny tends to hide Obie's basket a little more in the open so it's easier to find but that makes it easy prey for Ian. For some reason the Easter Bunny hasn't figured out how to deal with the age gap when hiding baskets so I'm taking suggestions for next year. What I mean to say is, I'm taking suggestions so I can write to the Easter Bunny to give him some new ideas for hiding the baskets. I just wanted to clear that up.
After all the eggs were uncovered, thanks in large part to the dog, Hopper, pointing the way, and all the baskets had been found, we packed everyone in the car and headed down to Seattle Children's Hospital to attend the morning mass.
The hospital has a small chapel and it was fairly busy this morning. The chapel has seating for about 25 people so it's a nice cozy setting. People are free to come to the chapel anytime they want to worship and they hold special services on days like Easter. The service was nice and it didn't last too long. Easter is a special celebration for anyone of the Christian faith but the moving part for me was the number of parents in the room. All of us are here in the hospital today celebrating Easter according to our faith and many of the people in the room have sick children in the hospital. Normally I'm not one to get overly sentimental about Sunday service but the "Sign of Peace" today was an especially moving moment for me. Welcoming strangers, sharing an embrace, and shaking hands with people going through the same emotions and dealing with similar circumstances made the event a touching and memorable occasion. It was definitely a service to be remembered and cherished.
After service we all went to visit with Eli. Last night was probably the longest we've left Eli alone since we've been in the hospital so I was getting a little anxious to go see him. Ian and Obie have been asking about "Brother Eli" as well and I'm getting the sense that they miss having their brother around. Obie still doesn't think we should bring baby Eli home though. Patricia dressed Eli up in his Sunday best and we managed to get a few pictures to share with everyone, including a special furry visitor who decided to perch right next to Eli for the photos. That Easter Bunny sure is a tricky little guy.
I stayed with Eli for most of the afternoon while Patricia and her sister took the boys back to the house. The rest of the day was pretty quiet and uneventful. Eli continues to do well as he slowly grows bigger and stronger but his breathing issues persist. We're hoping to get some answers this week and we have a "Care Conference" scheduled for Monday afternoon with Pulmonary to discuss options for Eli's on-going respiratory care.
God Bless and Happy Easter!
Friday, April 2, 2010
04/02/10 Month Two
Eli is two months old today yet it feels like Eli has been with us for years. It's hard to imagine that he's only been with us for 8 short weeks. Patricia and I have put some miles on in terms of life during the last 2 months. Being the parent of a sick child ages you in ways I never would have imagined but we're surviving and Eli is growing.
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