Day 14 Post-op Updates

11:00pm update:

Here's Seth's summary update for the day:

Job is out of the CICU! This is our first night in the stepdown ward, aka surgical floor, aka River 6, aka River C. It has a lot of names. No matter what you call it, it's a huge step!

He is still on viral precautions, but his sats and respiratory rate are well enough that he is no longer on any oxygen support.

Job has been pretty withdrawn and lethargic the last several days as he slowly regains strength and recovers from his cold virus. We were able to get him to sit up for small segments of time today, but he tires quickly.

Speech and OT are going to visit Job tomorrow, so hopefully we will make headway in those areas while we are here in the ward. As of now, he is still only cleared to eat applesause and other pureed foods.

One major thing that must be accomplished before we go home is stabilizing the immunosuppressant levels in his blood. This is something we are going to learn more as we go, and we will update more as we become more educated on managing and protecting his body with a now compromised immune system.

6:07pm update:

Job has had two big fits today and cried audibly and pulled himself up to sit and even to stand, using his crib. What prompted such an energetic burst of activity and emotion? The sight of food and drink.

It's really exciting to see him be so interested in something and to make sounds and to move his body... but it's really sad because he does all of that work but we can't reward him. We just try to tell him we understand what he wants but we can't give it to him even though he's asking really nicely.

4:00pm update:
Job went down to .5 LPM of oxygen when we arrived on the floor and then after an hour or two of that he pulled off his cannula and hasn't desatted since. Well, he has but then he coughs and his sats pop right back up. He hasn't desatted and stayed down there in the 80s.

We're getting all moved in to our new room. They brought over a play mat and we've spent a lot of time rolling around on it and cuddling on it. Eventually I'm sure we'll spend more time in an upright position but right now we can only sit up for a few seconds here and there.

As a a transplant kid, Job will from now on always get his own, single room. The ICU, is, of course, all single rooms, but the floor has a majority of double rooms. It's really nice to have our own bathroom (ICU bathrooms and showers are for patients only) and our own fridge and such a huge room with lots of floor space (and not very many machines!!), and the fold out couch can be pulled up right next to Job's bed (unlike the bed in the ICU which was pretty tucked away from Job). We can eat and drink in here too, although we can't let Job see us do so or he gets really upset because he wants to eat and drink too. It's just really nice to get to do whatever we want without all of the ICU precautions (that are totally reasonable for the level of care required there).

1:00pm update:
Here we gooooo!

12:00pm update:
 All packed up and ready to go. He just sits and watches everything skeptically, with his legs crossed.

10:30am update:

WE'RE MOVING! Eeee!

His Art line gets to come out, his PICC line can be hep locked, he can wean off oxygen, more meds switched to entral... fun stuff! But no more ICU!

We went down to 1 LPM of oxygen at 100% FIO2,

8am update:
Cuddles make everything better. He's bored of stories and my attempts to get him to watch TV and my silly faces and games, but he doesn't have the stamina to do much else yet. Even just a few hours into this day I'm so excited to see a huge difference in his responsiveness compared to yesterday.