Day 10

Today they pulled the IV that was going into Hailey's heart out. The surgeon did that this morning. They had to come put another IV in so they would have another place to put medications in if they need it. They tried 4 or 5 times without success. Finally they managed to put one in her ankle. It was sad to watch but they got it. I think the nurse could tell I was feeling a little tense with how many times they had to try because she told the IV team to try just one more time and not any more if they couldn't get it.

The nurse took the time to show me one of Hailey's chest x-rays (they do one every morning) and explain all the different lines and tubes, what they do and where they are. She was really sweet! The nurses have been great! 

Now that the heart IV is out, they may be able to take the last drainage tube out.

Hailey's lungs still sound really wheezy, so they had to put her on some continuous medication for her lungs . It tends to make her heart rate high but they feel like clearing her lungs is the highest priority right now. 

I think I got a really good explanation from the nurse on why Hailey's lungs are so inflamed. She compared the vessels in Hailey's lungs to a garden hose where there has always been just a trickle coming through, but now that those vessels have been enlarged it is like turning it up full blast and it actually injures the lung tissue and lining at first. Then, over time the lungs heal and adjust but it does take time. She said some MAPCA kids can be on ventilators for months, which I don't think is what they anticipate, but I guess it gives me some perspective. 

Anyway, it was a pretty good day. We took Abby and Katelyn to see Hailey. A child-life specialist came and gave them a doll to play with that had a band-aid on it's chest. The girls helped her put on a pretend IV and breathing tube and EKG wires. Then they wrapped her in a hospital blanket. They have taken the bandage off Hailey's chest because they want it to get air, but we covered her with a blanket so the girls could see her. They were glad to see her, but a little anxious about her after. Katelyn keeps asking why we can't bring her home yet and Abby wanted to know if she is going to be okay. They both drew some pictures for Hailey with the child life specialist and they hung those up on the wall. I think that made them feel better.

Today I was thinking of all the things I am grateful for this Thanksgiving season. I have a very long list that includes the kindness and generosity of so many people, kindness and generosity beyond anything I could have imagined and gratitude that language alone can never hope to express. I have so much to be grateful for, this wonderful facility, these amazing and capable doctors and nurses, my sweet little family, our extended family, wonderful friends, the gospel of Jesus Christ, an eternal family, my healthy little girls, Hailey's daily progress, the support of family and friends and even kind strangers, and the list goes on. I can't express our humble gratitude for the outpouring of blessings we have received in the midst of this trial. It has left us in awe and reverence for all of you who care and give so much of yourselves in our behalf.

We feel your love! Thank you all!