*surgery update #4

His name sign on the door of his PCCU room:

After surgery kids go to the PCCU (Pediatric Critical Care Unit). This hallway mostly has children who have also had heart surgery. 

Will is doing okay. Recovery is much more difficult than waiting for his surgery to be over. It's hard to see him like this and not be able to hold him. At the nurses suggestion we took some pictures in case he wants to see them when he's older. Although he looks rough he is resting comfortably and we know he won't remember any of this. We will certainly never forget what this was like. Hopefully we can hold him soon after the ventilator is removed.

We have seen him open his eyes some but he mostly sleeps. This morning he has been a little swollen so his eyes are puffy and his arms and feet are noticeably bigger. But still in a cute chubby baby kind of way.

I don't think he is improving at a record pace, but it could be much worse. I misspoke before about him not needing a pacemaker. I had forgotten that the pacemaker wires were attached to his heart during surgery just in case they were needed to help regulate his heart rate during recovery. He had some abnormal rhythms last night and they used the pacemaker for just a few minutes. Today that happened again - this time the nurse described it as one part of his heart not communicating well with another part - and the pacemaker is back on, this time for several hours. I think everyone leaves cardiac surgery with pacemaker wires but only a small percentage need one permanently. Temporary help from pacemakers is more common.

On the upside, his incision looks great. It is 2 inches long with very little stitching. It is a red line covered in dermabond that looks like a liquid bandage. Here is a Vanderbilt article from a few years ago with a picture of a little boy whose incision has healed into a barely noticeable scar. The doctor in the picture is the surgeon who worked on Will yesterday.

On Friday we met with a Child Life Worker whose job it is to prepare a family for surgery. Since Will wasn't interested in being prepped (he was too busy staring and smiling at his mobile) she showed us a picture of a baby right after surgery. She explained that this time would be different from NICU rooms in that his crib is in the middle of the room. That way the equipment can be all around him. There is much more equipment, tubes, wires, meds, and noises than he ever had in the NICU. Some monitors are hanging from the ceiling and there are 3 freestanding poles with wheels on the floor that are holding his medicines, ventilator, etc.

She also showed us a close up picture of the incision and chest tube that drains fluid from inside his body. Then she had a picture of a little girl one year after surgery. The scar had healed really well! Last she showed us a picture of a little boy about 5 years old. He was SO proud to show off the scar from his OHS as an infant. The Child Life Worker said that when she asked if she could take the picture he took off his shirt before she could ask his parents to sign a consent. He jammed his hands down in his pocket and gave her a huge grin. Seeing that is enough to make you want to get your child's heart fixed. :)

Speaking of ventilators, sometimes babies are able to do without it as soon as a few hours post op. When we saw him around 4pm they said the plan was to try to wean Will off of his Tuesday morning after rounds. But by this morning his status was such that they now think it may be tomorrow. They say he is doing most of the breathing work and it is on a low setting.

Taken the day before surgery. Happy boy!

You can't see them but he has all those little leads with wires on his chest just like in the NICU. The brace on his foot is covering the newer IV port. Of course after surgery he has much more than one IV.

I included this last picture because I think it's cute that his shirt couldn't cover his chubby tummy.

Announcement: Will is accepting artwork from his little friends to decorate the door of his room. It needs to be the size of a regular sheet of paper to fit in a plastic protector sleeve. You can mail it to our house. Or if you want please visit the hospital's website: http://www.vanderbiltchildrens.org/ to send him an E-card. They will bring it to us and we will show them off on his door. I haven't tried this and won't be sharing my email address or his room number online so please use William rather than Will under patient's name. Maybe that will make it easier for them to find him. And of course after he is discharged these will be saved for Will to appreciate when he's older.

Thanks again for all the emails, text messages, and voice mails telling us that you are thinking of and praying for Will. We are very grateful.