Ups and Downs

Good morning from Riley Children's Hospital... I am sitting next to a very precious little boy right now who just fell back asleep while watching Finding Nemo.  It's really quiet in this room this morning so I thought I'd take a second to send out an update.  

Yesterday was a day with extreme highs and lows.  In the morning, Caleb was awake and talking after coming off the breathing tube the previous evening.  We were so encouraged by that step, to see Caleb able to breathe on his own.  I even got to hold him for the first time since Thursday and it was amazing. For a few hours, we felt almost blissful... until the middle of the afternoon.  Caleb's oxygen level started dropping, and dropping, and wasn't going back up.  Everyone rushed in and they put a bag on his face and tried to get his oxygen to come back up but it didn't for several minutes.  The nurse was standing right there with the epinephrine while the flurry of doctors and respiratory team tried to get things back to normal.  Fortunately, after about 10 minutes, he settled down and the numbers started going back up, but it was terrifying.  We were so shaky and so was he- it really scared him to see everyone rush in, and of course for Dr. Raj to put the oxygen bag over his face.  After that event, it was so hard to remember that only a couple hours before that, we were in great spirits.  It just reminded us that even though Caleb is fairly stable, his heart is still incredibly sick and he needs a new one desperately.

The rest of the evening was uneventful, and Caleb went to sleep at about 8 and slept all night, 12 whole hours, so that was great.  His oxygen steadily improved all evening and has been in the high 70's since then, which is really good.  This morning, he actually looks better than he has in a couple weeks, which makes me realize just how sick he really was at home and we didn't even know it.  His puffy face is totally back to normal and his lips are pinker.  He looks like a different kid than he did on Wednesday night when we were trick-or-treating... I still can't stop thanking God that his heart didn't stop sooner.

Today will be another day of rest for Caleb.  Tomorrow we will have a lot of meetings with doctors, insurance, and who knows who else to get Caleb on the transplant list as soon as possible.  He should get listed quickly, and then the real waiting begins.  In the meantime, we have to pray fervently that God would sustain his life until a new heart arrives.  I had really hoped we could just coast until he gets a new heart, but yesterday he proved to us that he is still fighting for his little life.  We have to choose, each day, to celebrate that day's successes and brace ourselves for the day's challenges.

Daniel and I are doing fairly well... we're tired of course, but we're glad we have each other to go through this together.  The hardest part is the ups and downs; they are excruciating.  We get great news, we get awful news, and back and forth.  Just when we relax a little, he has an episode.  Being here takes more patience and strength than I feel like I can muster sometimes, but it helps to just focus on one step at a time.  At the end of each night, we're reading Scriptures over Caleb and praying for strength for the next day and for God to help us keep fear out of our minds.  Each time we go to God asking for help, He has given it and we get glimpses of being refreshed and uplifted.  We are actually sleeping at night, and eating when we can, and doing our best to take care of ourselves.

Here's what you can pray for specifically today:
1- for Caleb's sats (oxygen) to stay up
2- for Caleb to feel as comfortable and secure as possible
3- for our insurance company to agree to cover the transplant- which is the first step towards Caleb getting a heart

We send our love from inside our 12-foot-by-12-foot-hospital-room-home.  I think it's safe to say that I'll be able to update this blog regularly so keep checking in!