When they take kiddos off the vent they put them on VapoTherm (basically oxygen and water shoot up their nose). They said he could be on it for a few days or for weeks, it just depended on how well he did. Just this afternoon he was taken off VapoTherm and put on a small amount of oxygen through a nasal cannula. A big step! They are actually thinking he will be able to come off the oxygen completely this evening! His breathing has improved SOOOOOO much in the last 2 days!
Will on VapoTherm (seriously I cannot get over how cute he is!)
During the night shift last night, Will pulled his NG tube out. They decided before they put another one in that they would try a bottle feed. He has now had his last 3 feedings completely by bottle! AMAZING! This is such a BIG deal for several reasons. But the main one is that we were told that if his heart was working too hard (a bad thing) that he would be too tired to eat from a bottle. Dr Awesome was so pleased that he was able to eat. He wasn't able to eat more than a few ml at a time before surgery because he would just get too tuckered out.
He's now eating an ounce and a half every 3 hours!
The nurse still has to help burp him due to all his wires and tubes.
Friday, they took out his chest tube and closed up the rest of his incision. This morning they took out his catheter (he's much happier now) and one of his IV's, so at this point his wires and tubes are down to his arterial line in his right arm (this is how they do his blood draws and monitor his blood pressure), a pulse-ox on his foot, the leads on his chest (5 of them), an IV in his right leg, and his nasal cannula (soon to be removed). The spaghetti mess of wires is getting smaller!
He is still on IV meds for his BP and to help "optimize" his heart function. They have started to wean him from the IV blood pressure meds to an oral one (he needs to get on an oral one in order to come home). And his diuretic is now oral as well (they are trying to keep his fluids low to help his heart work "smarter not harder"). We are not getting any time lines for him to come home. The doctors say it's all up to him, and that they don't pass final "judgement" on home until he is packed up & in our car.
He's no longer a naked baby! He doesn't particularly like clothes.
Julianna has spent the last3 days here at the hospital with joe, my mom, and myself. I was so tired of not seeing both of my kiddos whenever I wanted and when we were able to get a room at the Ronald McDonald House I was excited she could stay with us. She did really well until today, and I think she was just really ready to get out of the hospital and be somewhere else. We spent our days amusing here with the various toys at the hospital and RMH, and going for wagon rides, and elevator rides, and escalator rides.
Today she got to play with a mask (Joe and I had to wear them while one of Will's dressings was being changed).
She loved getting cups of ice & water, she felt like such a big girl.
Sibling jealousy reared its head yesterday when Julianna and Joe returned from a nap at the RMH to find me holding Will. She kind of flipped out temporarily. She suddenly wanted to sit on my lap and tried to climb up even with all Will's wires. That amazed me because she has wanted nothing to do with me since I got home from my hospital stay almost 3 weeks ago.
Both the kids are doing really well and I cannot wait for us to all be home as a family and get some sense of normal life again.