08/22/10 Hematology

This week we were able to get Eli in to do some additional blood work and we had a hematology clinic appointment. The lab work showed Eli's hematocrit had improved a little since our last appointment but it was still a little low and they are going to continue to monitor it. In addition we found out that the size and shape of Eli's blood cells are normal which rules out a lot of bad blood disorders. It looks like Eli's marrow is producing blood cells but the recurring theme was a low ceruloplasmin level. Ceruloplasmin is associated with Menke's disease and we've had Eli tested for the genetic marker and it came back negative. We've also gone round and round with his ceruloplasmin tests. They sent this test off to a special lab at one point to measure how low it really was and the special lab came back with a normal result albeit a little lower than what was measured at the hospital lab. According to the hematologist we meet with the result may be "normal" but it's still lower than it should be and could have some blood impact. They are going to send Eli's blood off to the special lab again to measure the level again and then we're going to look at next steps. We discussed the possibility of doing a bone marrow extraction to make sure his marrow was healthy and producing red blood cells the way it should. This is a bit of a long shot but something we might consider if Eli has to go under general anethesia for something else.

I've attached a graphical representation of Eli's hematocrit level since he was born to give you an idea of what we've had to deal with. Normal hematocrit levels for an adult male range between 39% and 50%. For a 6 month old the level should be somewhere between 33% to 40% on average. Young children have a little lower hematocrit than adults. Hematocrit measures the volume of red blood cells as a percentage of your overall blood.

Eli has been running on the low side of normal for most of his short life. What we don't know for certain is what impact we had from drawing all the blood during his first month of life. There was certainly some impact and we bolstered him with the transfusion but we still don't know if his blood issues are indicative of his overall condition or if they are simply a complication from the hospital stay and trying to find a diagnosis. The only thing we can do now is continue to monitor it and address any issues that come up.

07/30/10 Blood Work

We got a call from the hospital today to discuss Eli's tests and blood work. Eli's hematocrit has dropped down again and the doctors are a little worried about it. They want to do some more testing and more thorough blood work on him. We've asked if we can be referred to a specialist in hematology but Eli's doctor, Dr. Makris, is out of the office this week and the current attending isn't willing to refer us. I'm not sure what the big deal is because we had a hematology consultation when we were in the hospital dealing with this same issue so this isn't uncharted territory. It looks like we'll be waiting until next week to find out if we get a hematology referral.

07/28/10 Results

On Monday Patricia took Eli in for his clinic appointment. Things have been going fairly well at home so we were looking forward to getting some test results back to confirm his progress. Overall, his appointment went well but we have a couple issues to deal with. Specifically, the site where the G-tube comes out of his belly is growing. They call this a granuloma. Eli had an umbilical granuloma which we had treated with silver nitrate. They recommend we have the granuloma site treated to stop the tissue growth. They also think we need to get a button put on the G-tube. Normally this wouldn't be a big deal but we have to put Eli under anesthesia to perform the procedure. He didn't recover very well when we had the original procedure done so we're a little worried about this.

Eli's CO2 levels have been really good lately. He's even dropped down into the high 40's on a few of his tests so it's nice to see a little progress on this issue.

07/25/10 Steady Progress

Eli has continued to show slow but steady progress. He still have pronounced hypotonia but we think we might be making some strides with his apnea.

Over the last month, nights had become increasingly difficult because Eli simply didn't want to keep the BiPAP mask on. We were getting maybe 4 or 5 hours of sleep and Eli was barely tolerating the BiPAP during those hours. He continued to grow more and more restless. We soon got to the point where Eli was getting less than 4 hours of good BiPAP time at night so we had to start adding some BiPAP time during the afternoons. Needless to say this wasn't working very well. The good news is Eli continued to maintain his CO2 levels throughout this entire period so we were starting to wonder if we could reduce or even take him off the BiPAP.

Around the first week of July Patricia called the hospital and scheduled another sleep study for Eli. Eli's pulminologist, Dr. Makris, just about fell out of his chair when he found out. We had several wasted sleep studies while we were in the hospital and we vowed we'd never do another one. Well, times have changed...

A week later Patricia took Eli into the hospital on a Sunday night for the sleep study. The sleep study was done without BiPAP. Eli was on regular nasal cannual oxygen the whole night. Two days later we got the preliminary results. Eli had shown a significant improvement in the apnea and he was able to maintain his CO2 in the low 50's throughout the study and the blood work they did the next morning confirmed it. Dr. Makris agreed that we could take Eli off the BiPAP as long as we continued to monitor his CO2 level closely at home.

That was about two weeks ago and so far so good! Eli has continued to maintain his CO2 levels in the low 50's and he's getting more restful sleep. So are we! The net side benefit of this is we both feel Eli has had more alert and awake periods during the day. This was a very big step for us and we're hoping we can continue on without the BiPAP.

Eli is scheduled for his regular clinic appointment tomorrow so I'll post a little more about the sleep study and how he's doing after we get the results from his check up.

06/27/10 Holding Strong

The last few weeks have gone well. Eli continues to grow stronger every day. Nights are still rough but we're managing. I even got away to Hawaii on a business trip for 4 fabulous nights of uninterrupted sleep!

About 2 weeks ago we took Eli in to see a neurologist that was recommended to us by Dr. Shlafer. We were looking for a couple things. First, did we miss anything with the neurological workup Eli received at Seattle Children's and second, is there anything we can be doing right now to make sure Eli has the best chance to live a normal life as he grows up. There were two poignant moments for me during the visit with the neurologist. The first came when the neurologist was looking over Eli's records from Seattle Children's and noted that we had a very thorough workup and the doctor then mentioned how frustrating it must be to have such a pronounced case of hypotonia and no answers. In cases with pronounced hypotonia at birth there's usually a fairly significant underlying cause. For me, that just underlined the fact that Eli has some significant issues and challenges to overcome. The other moment was when Patricia asked the neurologist if he thought Eli would ever walk. I've never even considered the fact that Eli might not be able to walk but it's a possibility. We simply don't know what to expect at this point. We just have to keep praying and hoping that someday Eli outgrows whatever is wrong with him so he can live a fairly normal life.

Over the last couple weeks we've also had some issues with Eli's G-tube, specifically, the skin underneath and around where the tube comes out of his belly looks inflamed and possibly infected. Patricia has been cleaning it daily but it just doesn't look right. We took Eli in to the pediatrician and he said it looked ok so we're not sure. He told us to put some of the antibiotic rub on it daily but other than that it looked fairly normal. I still think it looks funny so we're going to ask at Eli's next clinic visit which is coming up in a week. In the meanwhile we're watching it close to make sure it doesn't start to look any worse.

On the positive side of things, Eli continues to get bigger and louder. He's making more baby sounds now and he isn't shy about letting us know when he needs food or if he isn't feeling well. He even started arching and trying to roll over when he's on the floor. I think he's really close to rolling over but I haven't seen him make the flop yet. Within the next week or two we expect he'll start doing it regularly so we're very encouraged by this progress. We also had some interaction with the Little Red Schoolhouse program sponsored by Washington State which provides physical therapy to children who are developmentally delayed.

Overall we're still watching and waiting. The boys love hanging out with Eli and Eli is especially responsive to Ian. Ian has such a gentle loving way about him and he really dotes on his littlest brother. Too bad that doesn't hold true for how he treats Obie... Ian loves to get down on the ground with Eli and he spends a lot of time talking to him and checking him out. Eli in turn stares at Ian and more recently Eli has started to babble and coo at him. It's been great to see the progress and the family coming together.

06/06/10 Overdue Update

My intent was to do weekly updates but there hasn't been a lot to report on. Patricia reminded me that we have a lot of people following the blog and even the little things are important so I figured it was time to post something again.

Eli has been home now for a while and he is still growing and doing well. As Eli has grown he has become a little stronger and a little healthier but we still run into issues now and then. For example, Eli was making some very frightening noises over the last couple weeks. When he inhales its sounds like his throat is collapsing and he is trying to suck air through a collapsed airway. The sound is fairly loud and can only be described as a cross between gasping and choking.

It just so happens that we had a swallow study scheduled last week so we decided to have the pulmonologist look at Eli to see if we could determine what was going on with the noises. Patricia took Eli down to the hospital and between the swallow study, the visit with the pulmonologist, and the lab she was at the hospital all day.

The swallow study went well. Eli has been progressing steadily in terms of his ability to swallow and handle fluids. They cleared us to increase his feedings by the bottle and subsequently he has taken a few of his feedings entirely by bottle. This is a big step forward for us. He isn't to the point where he can take all of his feedings during the day by bottle but just the fact that he is taking an entire feed now and then is a big step. We are still feeding Eli every 3 hours. We were also cleared to start him on some rice cereal. We'll start on some solids in the next month or so.

The meeting with the pulmonologist went well too. After examining Eli and listening to the noise he is making the pulmonologist thinks it's simply a matter of Eli getting bigger and having some floppy vocal cords. If you've been around any infants you know they can make all kinds of strange and startling noises but after a while you get used to them. I don't think I'll ever get used to the sounds Eli makes.

Eli's lab work came back relatively clean as well. His CO2 was in the low 50's and his bicarbonate was in the normal to normal high range. Everything looked pretty normal with one exception. Eli had a dangerously high level of potassium in his blood. We were told that this is fairly common if a blood vessel is broken during the blood draw. Basically it's a false positive. They asked us to bring Eli back the next day for another blood draw. The result of that blood draw was perfectly normal so the assumption that the potassium was related to a broken blood vessel must have been correct.

As of this weekend we're still progressing. We've been in contact with some early development intervention professionals. They will come evaluate Eli and work with us to make sure Eli has the support he needs to catch up with his development. This is a state funded program available for children who are deemed to have developmental delays of 20% or greater. Since Eli has a feeding tube and is taking the majority of his feeds through the feeding tube he automatically qualifies. We've also scheduled an appointment with a neurologist outside of the hospital network. He was recommended by our pediatrician and we're going to have him review Eli's case and examine Eli to give us a second opinion. We want to make sure we're not missing something and we want to make sure we're still pushing for a diagnosis.

Finally, as of this weekend, we think Eli is starting to make some normal baby noises like cooing. He has been having more and more alert and awake time and he will sit and stare at his big brothers while they are running around acting crazy. Both Ian and Obie absolutely love their little brother but they are very rambunctious and they need to be reminded to be careful around their little brother.

For all the positive things going on we're still having a lot of issues with sleep. Nights are not the same in our house. Eli continues to struggle with his BiPAP mask and he requires a lot of interaction at night. Patricia has handled almost all of this interaction. Obie has been struggling a little getting used to having a younger sibling in the house and I think that's come out at night. He wants to be snuggled to sleep most nights and almost always by Mom who is busy trying to deal with Eli. Between Eli and Obie and having them wake up in the middle of the night, sometimes several times, we don't get a lot of good sleep. There have been several nights where we've had less than 3 hours of sleep and those are tough especially if it's on a work night. Thankfully Ian has been steady when it comes to sleep. He goes to bed at bed time and he wakes up around the same time every morning. We've had limited issues with Ian related to bed wetting but most of those challenges are behind us now. We're dealing with the lack of sleep and we're taking every day in stride. Overall it's been worth the struggle because Eli is home and progressing.

In a broader sense we're watching Eli grow and we're working to prevent future developmental issues but it's largely a waiting game at this point. We continue to pray for strength, patience, and healing. The love and support everyone has shown us has been absolutely amazing and we want you all to know how much we appreciate it. I couldn't imagine going through this process without all the help, love, and support we've received.

05/23/10 Weekly Update

The last week has gone pretty well in terms of Eli's health. We are very happy to have him home but it has been a lot of work. The nights have been especially rough as we cope with putting Eli on the mask while trying to get him settled down every night.

During the week Eli had a pediatrician's visit and a pulmonary clinic visit down at Seattle Children's. Both appointments went very well. Eli is maintaining his CO2 at home and his bicarbonate levels are holding steady. The only thing to note was a slightly lower hematocrit level. If you've been following the blog you know that we've struggled with some blood issues and we even had Eli transfused at one point to overcome the hematocrit issues. For some reason we just can't seem to put the hematocrit issues behind us. Eli's retic count is up in a solid range so there wasn't a lot of concern at the clinic but it's something that we are going to need to watch for the long term. Maybe the low hematocrit levels have something to do with Eli's overall condition. Since we don't have a diagnosis we're still looking for any possible explanation but so far we haven't been able to nail anything down.

The biggest challenge right now is getting enough sleep to be functional. As any parent knows, there's a period of time after you bring your baby home when you long for a solid night of rest. We pushed that off a little when we had Eli in the hospital because we could head up to the sleeper room to get some uninterrupted sleep. Now that we have Eli home we have been dealing with the issues that lack of sleep brings. Everyone has been a little cranky this last week but we're working through it and we're getting the job done with Eli.

On most days when we take Eli off the BiPAP we take a quick sample of his CO2 level using the end tidal CO2 monitor. I think we're averaging something in the low 50's most of the time and we even had a reading in the high 40's one morning. Eli's next clinic visit is about 3 weeks out so we have some time between the official check points but we feel like things are going well.

I'll try to post another update soon so stay tuned and thanks for your continuing support and prayers.

05/12/10 A Great Night

We had a great night last night. Eli slept through a good portion of the night and we actually got a decent amount of sleep. Hopefully this will be the start of a trend.

We have an end tidal CO2 monitor at home and we've been sampling Eli's CO2 levels. Last night we had readings in the mid 50's. This morning Eli was sitting in the low 50's. We're hoping the end tidal monitor is accurate because it shows us that Eli's CO2 levels have been very stable at home.

05/11/10 Hard Work

Eli's first night home was anything but relaxing. He fussed a lot last night and I don't think any of us got much sleep. Eli is getting really strong which is fantastic but it's trouble too. He can move his head enough to wiggle out of his BiPAP mask if he wants to and when he is worked up there's no way you're going to put the mask on and keep it there.

The transition home has been a little rough since we didn't get a lot of sleep last night but we're still very happy to have Eli home. We missed out on the sleepless nights that come with the first several months of parenthood because Eli was in the NICU and we could hop up to the sleeper room to catch 6 or 7 hours of uninterrupted rest when we needed to. Now that we're caring for Eli at home we have to do all the things the nurses were doing in the hospital. It makes for a very busy evening especially when you're tired and trying to get a little sleep. I suppose the NICU spoiled us a little so it's time to take our lumps. It's not that I'm complaining. We knew the price we'd pay in terms of sleep when Eli was born and we paid it in full with Ian and Obie but somehow we forgot what it would be like. I remember feeling that way when Obie was born and I remember thinking back then, "I'm getting too old for this." Fast forward 2 years and we have another little one demanding our attention in the middle of the night and now I'm thinking, "I'm REALLY too old for this!" On a normal night we probably get between 7 and 8 hours of sleep and I probably drink 16 oz. of coffee in the morning before I start to feel "normal". If I push the limit I can survive on 5 hours of sleep but I'll need about 32 oz. of very strong coffee in the morning before I'm capable of opening a spreadsheet. (That's a little accounting humor for you)

We're hoping for a smoother night tonight but we'll survive. Tomorrow Eli goes in to see Dr. Shlafer, our pediatrician, and on Thursday he will go back to Seattle Children's for the pulmonary clinic. We will probably have weekly pulmonary clinics for the foreseeable future and fairly regular pediatric visits. We plan on taking Eli to another neurologist for a second opinion but I don't think there's any rush right now. Dr. Shlafer has recommended someone in Bellevue and we'll discuss it with him during Eli's appointment tomorrow. It will be nice to have someone review the neurological tests and findings and see if there's anything else we should consider doing to find a diagnosis. It's still frustrating that we don't have a final answer but we'll live with it as long as Eli is home and getting stronger every day.

05/10/10 Home at Last

Today started off rough. Eli had another CO2 reading at 6:00am and the reading was a dismal 66. I told Patricia we still needed to push for home. The reading was take after Eli was off his BiPAP for a while and he was having some problems keeping his oxygen saturation level up. We really need to press to get home. We could sit in the hospital for weeks like this and there's no point.

Finally by late morning Patricia calls me with the good news. The attending on the floor had a discussion with our pulmonologist and they both agreed there was no point in chasing a number. They are going to discharge Eli! Finally!

We realize we're in for a lot of work at home but we're up for it and we feel like we can do a better job caring for Eli in the home setting than they are doing at the hospital. It's going to be a very big day for us today but like everything else in the hospital the discharge is being done on hospital time. That means Eli is stuck there until the late afternoon.

By the time they get all the paperwork ready and they get everything set for discharge it's about 3:30pm. Patricia calls me at work to let me know they are on the way out the door. Thank God! My Mom and Dad came down to the hospital today to help with the transition. After 3 full months in the hospital there's a lot of crap to haul back home. Add on top of that all the medical equipment and supplies we've accumulated and there's a literal truck load of stuff to bring to the house.

By 4:30pm Eli is home! It has certainly been a long time coming and we're grateful that we're made it this far. There's a lot of stuff to get set up and Patricia and my Mom get to work. They manage to get Eli settled in without any problems. He's doing great and he looks like he is loving the chaos and excitement his two big brothers are creating.

I finally arrive home around 6:30pm. The home care delivery service is in the driveway delivering the oxygen "mother tank". I walked in just in time to see how it all works and to get the final instructions but it looks like it will be pretty easy.

Dinner is on the stove thanks to our neighbor Rebecca and the boys are down with Grandma eating. I can't believe Eli is finally home! We've been waiting for this day for so long it's like Christmas for us. I think everyone knows how much work it's been to get here and we know it's going to take a lot of love and hard work to keep Eli here but after the process we've been through I think we have plenty of love and commitment to spare.

I'll try to get some pictures out in the next day or two and I owe everyone a thank you post. There have been so many people who have helped us out along the way it's hard to even contemplate thanking everyone but I'm going to try. The biggest challenge is simply not forgetting someone because there have been so many wonderful people in our life recently. Let me start simply by saying THANK YOU! I'll start working on my thank you post soon. In the meantime stay tuned because we still have a long way to go. Eli is home but he isn't 100% so we still need your good thoughts and prayers to speed his development and eventual recovery.

I'm going to go spend some time with my three boys.

God Bless and Merry Christmas (for us!)

05/09/10 Mother's Day

With yesterday's hope comes the expectation that we're going to make it out of the hospital today. This morning at 6:00am they draw some more blood for another CO2 test and the result is a 58. They want to observe Eli until Monday. I think this is a never ending cycle. Once again we've shown that Eli is stable within the range he has been sitting at for over a month now.

We had really been hoping and praying that Eli would be able to come home on Mother's day but I think those hopes and prayers went unanswered this time around. Our Mother's day consisted of Patricia spending the entire day with Eli in the hospital. Late in the afternoon I brought the boys to the hospital so we could all have a nice Mother's day dinner together. We stopped to pick up a pizza on the way in and we brought flowers and some candy for mom. It wasn't the best Mother's day ever but it was one we'll all remember.

After dinner I took the boys home and we left Patricia at the hospital with Eli with hopes that he would have a good night and we would be able to take him home on Monday.

05/08/10 New Hope

We finally get a break. Eli had a good night last night and his CO2 level at 6:00am this morning after coming off the BiPAP is 48. The last three weeks were not completely meaningless. Eli has his ups and downs when it comes to the CO2 level but we've shown everyone he is capable of bringing his CO2 levels down with a good night on the BiPAP.

We are hopeful that we won't have to repeat the last three weeks because we've switched over to a new mask. The new mask fits in Eli's nose a little better than the last one but the general mechanics are all the same. We spent three weeks in the NICU proving to everyone that Eli is stable and can maintain his CO2 levels at a consistent level. In the NICU Eli's CO2 level bounced around a little too. We were up to 62 or 63 and down to 49 at various points. Most of the time his CO2 was sitting in the mid 50's. Maybe the seal on the new mask will help us drive the CO2 levels down to the low 50's or even the high 40's like last night but the point is he's stable and we've proven it.

If we can string a couple good nights in a row then I think we can press to have Eli discharged. Tomorrow is Mother's Day and it would be nice to give Patricia an opportunity to hold her baby at home.

05/07/10 Bad News

Once again the sleep study was a complete waste of time and money. Eli had a very restless night and he didn't get a lot of sleep. Not only was the sleep study a total waste but Eli's CO2 reading this morning was in the high 60's so it's clear they aren't going to let us leave the hospital this weekend.

I went to the hospital after work today and found an assorted team of doctors hovering over Eli again. They are examining him without any respiratory support. Our pulmonologist, Dr. Makris, is listening to Eli and trying to figure out a way to keep him from obstructing his airway. Eli's low muscle tone causes his throat to collapse a little which results in and obstructed airway.

They have been examining Eli and watching him on the nasal pillows and they have now deemed the nasal pillow mask to be a failure. We go three weeks in the NICU with stable CO2 levels and then move to the floor for 4 nights and they declare the mask and respiratory support we've been giving Eli a failure. I'm not sure how that happens. Eli has been on the floor for 4 nights. His first night was pretty rough by all accounts. He was in a new environment and on a new machine. The next day he was circumcised so he probably had some residual pain on night two. On day three they decide to monkey with his mask and respiratory support. Regardless of their tinkering Eli seemed to have a fairly decent night the third night. Night four was the sleep study. Since we've moved to the floor we haven't had one single night where there hasn't been something going on that would be a disruption to Eli's sleep. Maybe Wednesday night but I think all the tinkering with his respiratory support in the afternoon impacted him to some degree.

During our discussions with the doctors there was another concerted push to move forward with the tracheostomy. I just don't think we should do it. We don't have a diagnosis and Eli seems to be getting stronger with every week. The tracheostomy route would leave us sitting in the hospital for another 8 weeks. What's going on right now with Eli just doesn't feel right to me. They have every incentive to keep Eli in the hospital and no incentive to let us take him home. I'm afraid this nightmare is going to keep going on and on and on. I expressed my frustration again with the process and our desire not to have the tracheostomy done. We're not ready to throw in the towel yet. In another 8 weeks Eli will be stronger and his breathing has continued to improve so the risks involved with the tracheostomy don't seem worth the benefits.

The compromise for the short term is another mask. We rigged something that we feel should work for Eli but now we have to go through the process of proving Eli can be stable on this new solution. I think I wrote about our concerns with "starting over" in a previous blog and now those fears are realized. Once again we're getting stone walled when it comes to laying out a plan for Eli. Do we need to prove he's stable for a couple days? A week? Two weeks? The answer is always non-committal. I'm not sure I can take much more of the "system". I've been trying to fight it single handedly for the last month or so and I think I've failed which means I'm failing Eli. I don't think the care they are giving Eli is anything more than we could do for Eli at home so I'm starting to think we need a new approach to fight the "system".

After talking it over a little with my Mom tonight I think we're going to give the hospital and this new mask solution a couple days. If it's managing Eli's CO2 and holding his level in the 50's then we're going to ask to be discharged. If they won't let us go then we'll have to explore some other alternatives.

Several years ago my Grandmother had a stroke and we had to put her in a nursing home for full time care. My Mom and Dad tried for a year to manage her care but there were numerous issues. My Mom told me they had to bring in an Ombudsman to help them advocate for my Grandmother's care and it made dealing with the medical staff and the bureaucracy of the nursing home a lot easier to handle. Maybe that's what we need to help us deal with Seattle Children's. I don't think the doctors there are bad or that they're being malicious but the fact is they are unable to find a solution that will help Eli and allow us to take him home. We can't live in the hospital indefinitely and they can't even communicate a timeline to us for when we might be able to take Eli home. The whole situation is unacceptable and I think we need some help to resolve it.

05/06/10 Training Day

Eli has another good night on the nasal pillows. We're looking forward to getting the sleep study out of the way tonight so we can move on with our plan to get Eli home. Patricia has been pushing them to release Eli before Mother's day. She deserves that. She is a good mother and she deserves to have her baby home for this special day.

Today we have training on all the home equipment scheduled for 1:00pm. I barely have enough time to wolf down a couple burgers from McDonalds on the way to the hospital. I'm really looking forward to getting Eli home so I don't have to bounce back and forth between home, work, and the hospital.

The training is pretty mundane. There's nothing really special to it but boy are there a lot of machines and supplies. They want us to have a portable oxygen unit which you can throw over your shoulder or hook onto the stroller. This will refill from the "mother" unit we'll be getting at home. Using the portable oxygen is a breeze.

Next up we have an end tidal CO2 monitor. It looks like a nasal cannula but it sucks air into the device and somehow analyzes Eli's CO2 level. We hook it up and give it a whirl and its reading 60 to 63ish. It bounces around a little and we're told it's kind of open to interpretation so we'd call that low 60's. Eli has been on nasal cannula for most of the day at this point so it seems reasonable. The machine needs to be calibrated and hooked up but it isn't too bad to figure out. By the end of the day we'll come to realize this is the most complicated of the devices which isn't saying much, they all appear fairly easy to use.

The next device is the pulse oximeter. Turn it on, hook it to the patient, and wait for the reading. There are some upper and lower limits to set on the device so it will only alarm when it reads a significant variance but I think this device is cake.

We get a home monitoring device with leads that will hook up to Eli much like the monitors in the hospital that measure heart rate, respiratory rate, etc... This machine is pretty loud making it the standby device to use when Eli is sleeping or when he is out of our line of sight. There are a couple bells and whistles on this machine but again it's not rocket science.

Next up is the actual BiPAP machine which is actually called a VPAP. I think the "V" stands for variable and I think the machine can do several different types of respiratory support. Ours is preprogrammed for Eli and it is already set up with the doctors instructions so all we need to do it turn it on and off and clean it. How easy is that?!?

Lastly, they set us up with a car battery. Yes, I'm not kidding. We have a portable car battery, charging device, and a device that converts the battery into 2 outlets. Just in case we have a power outage or something happens and we need power we have a backup. Seems like sound logical thinking and the toys are kind of cool.

I think that about covers the training. It took a total of 3.5 hours to go over everything and another 30 minutes to sign all the paperwork. Now all we need to do it cart all this stuff home. I think I'll have to recruit some Grandparents to do some moving for us when the time comes to bring Eli home!

Eli is all set to have the sleep study done tonight and Patricia is going to be on-hand to make sure it goes without a hitch. Tomorrow will be the telling day. We'll get the results of the sleep study and tomorrow we'll have 100% of Eli's care turned over to us for a trial run to make sure we can "handle" it. Good luck Patricia, I'm going to go have a beer! All joking aside we'll figure out a way to get it done. We have a lot of support at home thanks in large part to all of you guys reading this blog.

Wish us luck tonight and tomorrow!

05/05/10 Absolutely Amazing (Sarcasm)

This morning I got word that the night shift went very well. Eli slept a good portion of the night and Patricia only had to adjust his mask a handful of times. I'm hopeful that we've put the whining and complaining behind us now and we can now start to focus on what it will take to get Eli home. We also got word this morning that Eli was scheduled for the sleep study tomorrow (Thursday) night.

Patricia has been carrying the load at the hospital lately. I came down with another infection and had to go back into the doctors office to get another course of antibiotics. I've been coughing a lot so I don't think they would enjoy my company down at the hospital.

This afternoon Ian has a "program" with his preschool class and Patricia is leaving to pick him up around 11:00am. After his program he has class and after class Patricia will be heading back to the hospital.

At 3:30pm I get a call from Patricia. She informs me that one of the respiratory therapists named Jen, the same gal who made Eli a hat to secure his nasal pillows, on her own time and with her own money no less, called Patricia to let her know that the staff on the floor are messing around with Eli's respiratory support. They are trying to put him on a different mask and they've changed the BiPAP machine. She called Patricia to let her know so we could address the issue. Thank God for people like Jen who have compassion and intelligence. It's absolutely amazing (sarcasm intended) that they would feel it's appropriate to start tinkering with Eli's respiratory care after 2 nights on the floor when we've just spent the last 4 weeks in the NICU proving the mask and machine can maintain Eli's CO2 levels. I think it took me all of 3 seconds to flash to instant and unbridled white hot rage. I immediately packed up my computer and left work. Fortunately my office is about 15 minutes from the hospital so I arrived in time to address the situation. Patricia was on her way down to the hospital as well and she had the boys with her.

When I arrived they were trying to figure out a new mask. It's a good thing I had a few minutes to calm down during the drive because I didn't over react. I simply asked them what the hell they thought they were doing. The immediate response referenced the complaints over the last 2 nights and the fact that they all felt the nasal pillows didn't fit Eli properly. My retort included the fact that last night went very well. Why would we have any complaints from last night? I guess the same nurse had Eli for both nights and regardless of the fact that there were significantly fewer instances where they had to adjust the mask they felt it was appropriate to complain again this morning. I refuted the claim stating that Patricia was here all night and she said they only had to adjust the mask a handful of times. I also told them that we were not going to change masks. We had proven that this particular mask works to support Eli. We have been using it for 3+ weeks in the NICU and Eli's CO2 were stable in the 50 to 60 range on the mask regardless of the number of times they had to adjust it. Further, I said the mask fit just fine if they took the time to figure out how to use it.

Our goal at this point is to bring Eli home not spend another 3 or 4 weeks on the floor testing out every mask we can get our hands on to see if might happen to work better. I brought up the fact that we were once again messing around with Eli's respiratory care on the eve of a sleep study which caused us some issues during the last sleep study. With the last sleep study Eli was supposed to wear the nasal pillows for the study. Because they couldn't figure out how to use the pillows and because it was just too hard for them they opted to use a different mask for the sleep study. Of course this completely defeated the entire purpose of doing the sleep study but that's ok. Now we're messing around trying new masks and we have another sleep study coming up tomorrow night. I made it very clear that *if* we move forward with this sleep study we would be using the nasal pillows and we would find a way to make it work. There is no way we're going to do the sleep study if it's not going to give us some useful information. This will be Eli's 4th sleep study and 2 of the previous 3 sleep studies have yielded questionable data making us question why we're putting Eli through it and why we are asking our insurance company to pay for it.

By the time Patricia arrived I think they had received the message loud and clear. Somewhere in the conversation I had with them I asked if there was a handoff process between the NICU and the floor staff. They said yes of course there was. My response, "Well it doesn't sound like a lot of the pertinent information made it down here because it sure feels like we're reviewing a lot of decisions we made in the NICU."

Seattle Children's has changed me. I used to trust doctors and nurses and the care they recommend. Not anymore. I've seen the inner workings and this experience has taught me that medicine is more art than science. That might be hard to believe for some people because we have all these wonderful tests that give us lots of information. Tests are fine but the doctors who interpret the tests aren't using some formula that says 1 + 1 = 2. If a test comes back with this result it means X. Tests simply give them the information they need to make an educated guess. In the hospital setting you're hoping you get someone pretty damn smart with a lot of education and experience. We've been fortunate to have a couple of those doctors. The problem is they rotate out. When they leave you have another set of doctors who step in and they have their own interpretation of the data. Somehow the information and the facts you've worked hard to decipher with one doctor doesn't get passed on to the next doctor. That was the biggest shocker for me...communication is lacking! In the end you have a situation much like what we're experiencing with our move to the floor. Hey, let's try a different mask and a different BiPAP machine to see if we can get a different result. Thanks but no.

Fortunately the rest of the night goes without interference. Today just highlights for me why we need to get Eli out of the hospital now. If we don't get him out soon I'm convinced they will find a way to keep stringing us along. I think it's debatable whether they are doing this intentionally or with good intentions but in either case the net result is the same, Eli is sitting in the hospital for no valid reason while we repeat the same tests over and over again.

05/04/10 Rough Start

Last night was Eli's first night on the floor. I called this morning to see how things went and I got the nurse who was very vocal about telling me how they had to adjust Eli's mask 20+ times last night. She said the Respiratory Therapist was complaining to the supervisors and anyone he could get his hands on. What did they expect? Maybe they'll actually have to do some work for a few days while Eli is on their service.

This morning I spoke with Patricia and she told me today that Eli has two teeth that have broken through. She also told me that we could get Eli circumcised today if we wanted. Once of the urologists was available to do the procedure. They could do the plastibell procedure in one of the procedure rooms this afternoon. Grrrr! Remember last week when they told us they couldn't do the circumcision in a procedure room and they were trying to schedule an operating room? This is just one more instance where we found the hospital is working against us. Without wasting any more time we agree to have Eli circumcised today. If we don't get it done today I'm sure we'll have to wait another week to get the procedure done.

The circumcision goes well and Eli is basically out of action for the rest of the night. We'll see if tonight is any better in terms of managing his BiPAP mask.

05/03/10 The Big Move

Finally! We get to move down to the floor! Monday brings some good news. Eli is stable and doing better after his surgery and we're ready to head down to the floor. We'll be on the pulmonary service.

This is the first step toward home. We had some very specific conversations with the staff regarding the criteria for discharge. We want this to be crystal clear so there's no waffling when it comes to leaving the hospital. I think there's a tendency to say, "Let's wait another week". This tendency ends up keeping you in the hospital for weeks on end and the whole time you have no idea what you're waiting for. I'm bound and determined to avoid any more costly delays in getting Eli home. We've been sitting in the NICU for the last month watching and waiting to make sure Eli was stable. There's no reason we need to sit for another month on the floor. It's time to make the final push for home.

So far the hospital has been very non-committal in terms of telling us when we can bring Eli home but we've determined a few of the criteria. We need to show we can handle the home feeding pump for 24 hours. We did this once before when we thought we were going to be discharged at the end of February. There really isn't anything to it. You just hook up the pump and run it for a day. We also need to repeat the "car seat test" which means we have to sit Eli up in his car seat on regular oxygen for 30 minutes without any desaturations. Since Eli is going up to 12 hours on regular oxygen there shouldn't be any problems passing this test. We also need to make sure we can get the home equipment we need to support Eli. Patricia met with the home care people today and they assured us there wouldn't be a problem getting a home BiPAP machine. Finally, we talked with our pulmonologist and he would like to get one more sleep study using the nasal pillows. Last time we did a sleep study we were supposed to use the nasal pillows and they didn't so it was a complete waste of time and money. I think we need to question why we need yet one more sleep study and we need to have a clear understanding of what this test is going to tell us. If we end up moving forward with the sleep study we need to make sure it's done correctly using the right equipment.

That seems to be it in terms of the hurdles we need to get past. All of this assumes Eli continues to maintain his CO2 levels and doesn't have any other issues pop up. Now that we're on the floor it's time to push and get nasty about leaving if we have to. We would never do anything to compromise Eli's health or sacrifice his care but the level of care he is receiving right now from the hospital can be handled at home so there's no reason we need to keep living this nightmare.

05/02/10 Move Delayed

By Sunday Eli is back to a fairly normal routine. He is able to go on regular oxygen through the nasal cannula and he appears to be back to breathing on his own. Having the breathing tube down his throat has caused some issues though. His throat is scratchy and his vocal cords are swollen. These are normal side effects of the breathing tube and they will go away in a few days.

Eli is now on a little Tylenol for pain management. I think they had been giving him a low dose of morphine the last couple days which would probably explain why he wasn't waking up completely. Today he seems more like his normal self. When I got to the hospital this morning he was awake and he smiled at me when he heard my voice. Now that the stress and uncertainty of the past couple days is behind us we're glad we went forward with the surgery. We're still a little peeved that they couldn't get the circumcision done at the same time but you learn to deal with crap like that when you're dealing with the hospital.

Eli's CO2 level today is back up to 56 but he usually holds stead between 50 and 60 so we're not too worried about it. The rest of my day goes really well. I got a chance to sit and cuddle with Eli all day and by the evening I really felt like we were moving in the right direction.

Prior to the surgery we had talked about moving Eli down to the floor today but with the complications after surgery they decided to keep him in the NICU for another night. The plan is to move Eli down to the floor tomorrow. I'm not going to hold my breath but we're hopeful that we'll start the journey toward home soon.

05/01/10 Recovery Continues

This morning Patricia went down to the hospital early to spend time with Eli while I watch the boys. When she gets there Eli is still intubated and he is still on the ventilator. They are planning to extubate him around 9:00am but they want to get a blood gas first to see how his CO2 levels are on the ventilator.

By 9:00am they have the blood gas in hand and Eli's CO2 level is sitting at 41. Being on the ventilator over night has definitely helped to blow off some CO2 and gives us some good information for long term support. If we need to go down the route of getting the tracheostomy at some point we now know we can support Eli and keep his CO2 level in the "normal" range on a ventilator. Previously we had assumed this would be the case but now we have factual information that proves it.

Shortly after the blood gas is done they extubate Eli. He is still desaturating and adjusting to breathing on his own again so they put him on the BiPAP for the rest of the day. He'll need to be on the BiPAP all day and all night. Fortunately he is still recovering from the surgery and he is sleeping a lot but at least he is starting to breathe on his own.

One of the little zingers with this particular surgery has to do with not being able to feed Eli for 24 hours. In fact, they had to hold his feedings for a minimum of 6 hours prior to the surgery so I think he missed 3 feeds before he went into surgery yesterday. The surgery was completed around 2:30pm yesterday so Eli won't be able to eat anything until 2:30pm today. They are giving him fluids through an IV right now but he has been very unhappy with us for cutting off his food supply.

By 2:30pm he is definitely ready for some food. They give him a little Pedialyte to get things started and then they resume his regular feeds every 3 hours.

The rest of the day and evening go pretty well but he hasn't really had any good awake time yet. He'll be on the mask hooked to the BiPAP all day and night to make sure we can support his breathing. Hopefully tomorrow will bring a return to normalcy.

04/30/10 Surgery Day

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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...

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.

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!