Monday, June 7, 2010

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.


  1. This is wonderful news that he is doing better than Friday. Greg & Beth & Larry and I prayed for you guys together on Sunday. You are always in my thoughts, which lead to prayers for Henry and you. I so wish I was there with you dear frin.

  2. Kara, I love getting more info from your blog. It feels so great to hear "you" in these posts and get more of a sense of how you are feeling and what you are thinking. Plus then we can pray for all those specific things that are going on each day. I celebrate each of these little victories and evidence of "fight" in Henry!
    Love, Carrie

  3. I was led to your blog through a mutual friend. I know all too well what it's like to have to sleep at the hospital while your sick baby is being attended to. I don't know where you live, but please know that yet another someone in Austin, TX is praying for you, Henry, and the rest of your family.

  4. Kara & Scott,
    You are in our prayers.
    May God give you strength and may He bless your sweet son.
    You are all showered in prayer,
    Megan & Joe Schmidt
    (Jill Gilliland's niece in Indiana)

  5. This seems to be really good news for this hour, this day. Lord God, keep holding K and S's hands... thank you, thank you for henry...

  6. Kara and Scott...I, too, am a mutual friend of several of your friends. I have a little boy also 9 months old and I've been praying LIKE CRAZY for little Henry! Since the Hartsocks and Paul N. first put out FB updates, I've prayed for YOU GUYS continually as I've interacted with my little one. We'll continue to lift up the doctors for wisdom, you for strength, and everyone involved, especially for the 'fight' in Henry.
    -Erica M in VA.

  7. Came here from Buzzings and just wanted to let you know that Henry and your family will be in our prayers. Our 4th came early and under some unusual circumstances, landing him in the NICU for 3 1/2 weeks. It is an amazing exercise in trust and faith to be so unable to tend to our little one's physical needs. Praying for peace, His assurance, and wisdom for Henry's docs and nurses, as well as a miraculous recovery for that precious little boy!

  8. Your sweet baby...I had you on my bloglines list, and all of a sudden, all your posts popped up for some reason. Praying for Henry tonight.

  9. Dear Kara, I am praying for you and your family. I also have the online prayer group that I lead twice a day praying for you also. Thank you for the blog entries that keep us we know how to pray.
    Lord bless and be with Kara and Scott. Grant them peace and strength. Bless them with the courage they need to face the challenges of each day. Lord bless Kara's mother with strength to care for William and Edmund. Bless and be with Kara's parents in their own stress as well. Comfort them.
    Bless and place Your loving arms around dear sweet Henry. Guide the doctors and staff that are treateing him...and thank You for each step forward.
    Lord bless and be with each family member and friend who are concerned about Henry.
    May Kara and her family feel all the prayers and support and love coming their way. In Your name I pray. Amen