Day 12

Henry had another uneventful night for the most part. Yesterday morning, the doctors were hopeful that we would be able to transition him back to the ventilator (from the oscillator), but he had some negative reactions to being suctioned and didn't recover fully (yet) for them to make the move. It makes me laugh a little . . . Last week when we were here and Henry was awake and feisty, they would try to suction his nose and he would arch back and put up quite a fight. It always took at least two people to hold him down. I took it as a great sign of the fight inside my usually mild-mannered little man! As much as I wanted to see him transition in a step towards breathing on his own last night, I LOVE the evidence that he still hates suctioning and has that fighting streak in him (even when he is fully sedated and paralyzed by meds). We just need to convince him that it's for his own good I guess. ;) I'm also happy that a slight change in his numbers put the plan on pause. The nurses and doctors are quick to react and are so careful to understand what caused a change and how to even things out again. It's amazing. The nurses work so hard, which helps us to rest when we can.

Scott and I are taking turns sleeping in a special parent sleep room the hospital provides. There are only five of these rooms and they are given to parents of the most critically ill patients. While I am grateful for the quiet dark space and bed, I get a pit in my stomach when I consider how big this hospital is and yet we are always given a key.

We continue to be amazed by the generous ways people are reaching out to us to help with meals, play dates for our big boys, and other needs. We can feel the prayers surrounding us and are in awe when people who don't even know us tell us they are fasting and praying for our boy. We definitely do not feel alone.

Our big boys are on our minds a lot. We were able to visit them at home last night for a while and give them their baths and put them to bed. It was wonderful to spend time with them, but being in my house with evidence of Henry in every room was almost unbearable. His pack and play, high chair, and toys made me long for our normal life back. Some of you have mentioned my post from January (Boring, In a Good Way) and how striking it is that we are in such a different place.

Many people have asked if Henry's Down Syndrome has contributed to this situation in any way. It's a great question and not one that doctors have been able to answer. Last week, before he was in the PICU, I asked it many times and the doctors there brushed it off (as they brushed off many concerns) and simply said no. But his PICU doctors seem to think that it has contributed to the extremity of his reaction. The doctor who is the "main boss" (according to others here) is a man of great knowledge and experience, and he told me he has seen many other kids with T21 who have had serious reactions to common viruses. He believes this is probably the case for Henry. Surprisingly, they have tested for numerous viruses and only one has been positive: rhinovirus. Sound familiar? It's the common cold. They have not ruled out that there may be another virus on top of that, but nothing else has shown itself in the blood tests, and the PICU doctors have said that some kids actually just have horrible reactions to certain strains of rhinovirus. They told me they had many kids this winter who had colds and ended up in the PICU with life-threatening pneumonia, and that some of those kids had Down Syndrome.

We are waiting for the doctors to do their rounds this morning. They usually start with Henry, so they should be here soon. We are thankful to be asked to stand in on rounds and participate.

To leave off on a positive note, one of the residents who has been involved with Henry's care from Day 4 until now had the weekend off. She walked in this morning to check on him as soon as she arrived and said, "Wow, he is doing great compared to where we were on Friday." I have to hold on to that and hope that this trajectory will continue.

Thank you for all of your prayers and the many ways you are helping us.