*surgery update #5

I apologize for not having an update on Will yesterday. I will summarize that day: he was very swollen and didn't look like himself. He slept most of the time but we did see him open his eyes a few times and move around some. They are still managing his pain well which means he isn't very aware of his surroundings. Every now and then they will remove something attached to him like an IV in his foot, one of the medication drips, or the sat monitors attached to his forehead. The first part of his recovery was difficult. They reassured us that all the things he experienced were within normal expectations. At different parts of the day we would hear that he had a fever, fluid in his lungs, or his blood pressure was too this while his heart rate was too that. It's pretty amazing how a heart can immediately start to move blood through the body again so efficiently. So of course there are things like fevers and irregular heart rates now and then. Speaking of his heart rate...he did not need the pacemaker for very long the other day. They keep it nearby just in case.

Today is a totally different story! His face now resembles the old Will. His eyes had been so puffy that there was no crease in the eyelid. Now they look the same as before and he has them open. They removed the ventilator yesterday evening (hallelujah!) and he is on the Vapotherm [ higher oxygen levels that are heated and humidified) again. As of now the monitor says 8.0 liters per minute of 50% oxygen at 34 degrees Celsius. He started out with 100% oxygen yesterday. Just like in the NICU he will step down to regular oxygen through the nasal cannula and then to room air as he gets better. Since his mouth is free he is sucking away on his pacifier as I'm typing. I was happy to see them take the ventilator out of his room completely. Although this one was a different type than the one in the NICU and didn't make annoying sounds, I was glad to see it go.

We can't take pictures of the equipment, so I got a back view from where we sit.

When the vent was removed it was cute to see him get his voice back fairly quickly. First his face looked like it was crying but no sound came out. Within a few minutes he would make small noises that were really quiet. Then it turned into a squeak. He is still at the squeak level but it works for him. If I'm in the room but can't see him I can tell the pacifier has fallen out of his mouth by the tiny squeaking grunt he makes.

The information they give us here is luckily filtered through our experience rather than theirs. By that I mean they reassured us in several different ways that his partially collapsed lung is not that big of a problem. To me that sounds like the worst thing he has experienced. There are a few different things they can try to re-inflate it and we'll keep you posted on that. When we listened in on the team's report during rounds no one seemed concerned about it at all.

We won't be able to hold him again until his chest tube is removed. That is what drains the excess fluid from around his heart. Of all the things attached to him that one is the least pleasant for Chris & I. Although he has been getting nutrition through an IV (TPN like in the NICU) they are putting a feeding tube in again and will start to feed him today.

The other sign that he is improving is that he no longer has one on one nursing care. In the best cases that only happens for the first 24 hours after surgery. His lasted a couple of days longer than that due to needing a lot of attention as well as his room assignment. He was at the end of a hallway and the baby next to him still needed one on one care too. This morning he was moved to a different hallway - still in the PCCU - but his nurse is also taking care of the baby in the next room. We are glad the nurse he had yesterday came with him to the new room! She also works on the floor with the regular cardiac rooms that surgery patients step down to when almost ready to go home. She is the nurse that admitted him when he was there a few days in March, as well as the charge nurse there during the end of last week. Obviously we are starting to see even more familiar faces around the hospital. Some families but mostly staff. I discovered that our cardiology social worker is also from West Tennessee and we have mutual friends. Having these kinds of experiences helps us not dread being at the hospital so much.

 Our happy colorful notes from you!

 Special thanks to Chris' coworkers at NDC who continue to be so supportive, as well as the Durham, North Carolina chapter of the Baby Will Fan Club (Deborah Hackney, President). I can't forget to mention their satellite members Bon and Debbie who I hear are vigilant Will supporters in Chattanooga!

Hello from a mending Baby Will!