2nd Day Post-Op

Hi. Everything seems to be going well. They had to re-do Harlie's tracheostomy yesterday afternoon. They decided that she could go up 2 trach sizes. So hopefully that will give her a little more breathing room. They had to close up the stoma for the heart surgery because they can't sterilize it for surgery. So, they close it and patch it and try to clean the whole area as much as possible to avoid infection. So now they are treating her as a new tracheostomy patient which means that the trach stays in place for one week until ENT comes to change it and make sure everything is healing okay. That is scheduled for Tuesday.

Her cardiologist came by yesterday and said that ENT still talks about Harlie from when she was admitted after birth. Apparently, Washington Hosptial Center (next door where she was born) rarely calls someone from Children's to come and help intubate a patient. So, the severity of her jaw abnormalities are quite rare and memorable. To have so many rare things happen in one little girl, what gives? As she said, Harlie is one in a million.

Anyway, they are going to start feeding her today. I think they are going to start with unfortified breastmilk on a slow drip to make sure she tolerates it and then work up from that.

They took her off the vent at 6am this morning. And they will start removing the chest tubes today. Out of everything, those are the worst to see. So, we will be glad when those are gone.

I have to run now, but will update this entry as things develop. As always, thank you for all your thoughts and prayers.

Love,
Christy

12:40pm - The chest tubes are out. Hopefully this will make Harlie a little more comfortable. The surgeon reminded us that since the trach is right on top of her chest incision, infection is very possible. He said that normally the risk of infection is about 5%, but because of her gastrostomy and tracheostomy, the risk is about 50%. But they will continue to watch her closely, so we're not too worried. Okay, gotta go. Thanks for checking back!

3:40pm - Well, Harlie is definitely more alert now. She broke our hearts earlier when she saw us and started to cry. That girl is really something. She only cried for a minute and seemed to calm down and just look around. She was definitely upset when he was removing the chest tubes, but as soon as he left her alone, she was wiped out and went to sleep. She is starting to look more like herself. The swelling is starting to go down a bit.

PT and OT have come by to see her. The PT put her in a sitting up position. I am such a chicken, if it were up to me I wouldn't move her an inch!!! But surprisingly, she seemed to dig it. I remembered that when we did her barium swallow study she was all strapped down and couldn't put her hands in her mouth - and when they gave her a bottle, she sucked right away. So, I thought since her hands are all strapped down again, and she couldn't put her fingers in there, maybe the same would happen. So, we gave her a pacifier and she started sucking right away! We were so glad to see that because she hasn't sucked in such a long time. The OT said she wants to capitalize on that and start trying to get her to do some oral feedings while she's here. She's going to put a tube in the pacifier and connect it to a syringe so she can control the amount that she sucks. I'm excited about that. I would love to make some progress on that while we can. Well, it's time to get back in there. Talk to you later!