Jackson's Journal

Hi everyone, sorry for taking so long to update after Jackson's second surgery. He's fine now, but he did have a little setback while he was in the hospital after the surgery.

The second surgery was to have a new port put in and also had the tendons in his legs released (they were so tight they were pulling his hips out of socket). Both procedures went well from a surgical standpoint, and we were very grateful to have a room on the transplant unit waiting for him.

After surgery he needed to be on a little bit of O2 to keep his oxygen saturations above 90%, which happened after his previous surgery as well so not very concerning. After we got to his room the nurse started weaning him off the O2 and he was tolerating the wean just fine. I think he started out on 3L via nasal cannula when we got to the room, and the nurse weaned him down to .5L by early morning. He was having lots of pain and we were having a hard time getting it under control again so that was no fun but he appeared to be doing fine otherwise.

Around 5am things started to turn for the worse. His started requiring more oxygen to keep his sats up again. By noon he was back up to 3L of O2 and still having trouble staying above 90%. They did a chest xray that showed a small pneumonia (it was behind his heart and difficult to see), so they started a barrage of antibiotics and switched him to getting his oxygen via mask. At this time he was also still in quite a bit of pain so the docs ordered some higher doses of a couple different things (narcotics and muscle relaxers), and it pretty much zonked him out which made it even harder for him to take deep breaths. This downward cycle continued and by 3pm he was in major respiratory distress... at one point we had 4 docs, 1 NP and 2 nurses in his room discussing whether or not he needed to go to the PICU and get intubated. I've never seen him have such a hard time breathing, and it was incredibly scary.

Luckily things turned around as quickly as they had gone downhill. They switched him to a different kind of oxygen mask and that seemed to help. He also started waking up from his drug haze and was able to get deeper breaths. They gave him some Lasix to remove some of the fluid from his body in case that was making things worse. By 6pm he was much more stable, and talk of PICU had quieted down. That was Friday. Amazingly, by Saturday we were able to start weaning down his O2 and he was completely on room air by Sunday. He was discharged on Monday morning.

We stayed at Duke until the end of the week, and were released to travel this past Friday. You'd never even know Jackson had been so sick - he's just got a little cough left over and otherwise is doing great. His resiliance and ability to bounce back are just amazing to me.

It was a real wake-up call for me though. I've lulled myself into thinking he could just fight off any bug that he was exposed to since he's done such a great job of recovering from colds and such, but this experience showed me how truly fragile he is if he gets a bug in the wrong place (his lungs) or the wrong time (when his resistance is already down). And he got SO sick SO fast - if he had been on a different unit where the doctors weren't right there and on top of things, I don't even want to think about what could have happened. He went from doing fine to practically needing intubation within the span of 12 hours. ::shudder::

We left on Saturday to drive home and arrived home late Wednesday night. The kids all survived the drive (and Marshall and I did too) and we're all very happy to be home. Missing our North Carolina friends and doctors though - they took such outstanding care of us.

Jackson's school is set to start week after next and we're doing some re-evaluating of whether or not we want to put him in public school. I'll update about that when we make our decision. Thanks for checking on us and for your prayers.