On the road again... again...

Yes, really... we re-admitted Samuel to the PICU again on Tuesday evening. I think I'm reaching a new level of disbelief. I really can't believe this is our life... I had no idea you could be in the ICU this long. I know that sounds naive, and maybe it's more that I never thought in a million years our child would be in the hospital this long, but I always thought of it as; you get sick, you see a doctor, you get a treatment plan, you get better. Man, did I have it wrong.

Anyway, off the soap box and on to the more important things :)

On Tuesday we (the nurse I mentioned and I) took Samuel to Charleston for a routine, follow-up pulmonology appointment. Besides not being happy about the 7am departure time, Samuel was wonderful! At the appointment he was a complete ham. Every time a nurse, NP, or doctor came in he was a total show-off... smiling and dancing. This is exactly how he was at home - when he was awake. That was the alarming part - he slept a lot during the four days he was home, but he was so happy and playful whenever he was awake that everyone thought things were going okay. In fact, he looked so good that the docs were fine sending us to get lab work and then home - they would call us with the results. We tested basic electrolytes and his CO2 and bicarb levels. Because of all his sleeping, I was worried about the CO2 and bi-carb, and also because those were both high the last time we was re-admitted. But again, he seemed so happy that with each smile our worries were less.

We were about 15 minutes from home (it's a good 2-hour trip when you factor in loading and unloading Samuel's gear) when the NP called us... Samuel's electrolytes were fine, but his bi-carb was up and his CO2 was really high. He looked comfortable, so no ER or ambulance, but we were instructed to bring him back and re-admit him right away. Ugh. Tears. Disbelief. Heavy heart.

I dropped off the nurse and picked up DB and we were back to Charleston. When we got there, Samuel was once again an absolute ham! We joked about our "sick" baby because he had to be the happiest patient in the ICU... it's not really that funny, but sometimes you have to find some humor. We answered questions, got him settled, and tucked him in for the night. It killed us to leave him there.

The big question is why his CO2 keeps rising... which is very bad. (He's not having a problem getting oxygen, but he's having a problem getting rid of CO2, which is what we all exhale.) There is also no way for me to measure his CO2 at home, and even if I could, there is nothing we could do about it except take him back to the hospital. There are a few thoughts and theories, but no one is really sure what is going on. Right now we are observing and they are making a few minor tweaks to vent settings and his trach. I was hoping this would be a really short stay, but his CO2 is still elevated and I have no idea how long it will take to not only fix this problem, but also to get a plan in place so that it doesn't keep happening.

There are a few bright sides :) When I got home that night I opened up a 1-minute prayer book, and while I realize it's pretty sad that I only had time for a 1-minute prayer, talk about a nice kick in the pants! It was exactly what I needed! Basically, it was about recognizing all of the perfect provisions God has given instead of just the things that don't go my way, turning my "whining into rejoicing", and focusing on the positive. SO... today, even though Samuel's CO2 was sky-high, he did not have a major event. We were able to get to the hospital safely and calmly, and without needing emergency services. Our wonderful nurse was with me and was the calm that I needed. DB has a good friend and fellow soccer coach who was able to cover practice last minute so that he drive to Charleston... good thing because he has the super-human ability to cut through traffic like a hot knife through butter. Our good RT friend happened to be visiting that day and was at the house when we pulled in to pick up additional supplies and switch drivers... he followed us all the way back to Charleston, which was a huge sense of comfort, and helped us cart Samuel up to the PICU! Samuel was not in pain, but rather happy and smiling! We miss our baby each minute he is not home, but these things considered, there are reasons to be thankful :)