Today was a fast moving day. After a complete night without the Bipap machine and only on oxygen, Brandon transitioned to just oxygen through the cannula. That is significant because oxygen through the cannula is much less oxygen than oxygen through a mask. So Brandon is on a small amount of oxygen. On top of making great progress on the oxygen, the lungs sound much better. The lungs still have a way to go before they are clear, but there is significant air movement. In addition, Brandon has been fever free for two days and he was removed from isolation.
This morning the intensive care physician visited with us and said they wanted to remove Brandon from all the IVs, put him on cannula oxygen and move him to a regular room. However, as the day progressed we found out that all the rooms were full due to the large number of kids going to the ER. Last night the ER was standing room only. Finally this afternoon a room opened and he was moved to room 434, a regular room not in ICU or intermediate care. He is still receiving respiratory therapy.
Now we have a few remaining things that we haven't spend too much energy addressing while he was in ICU. The first is Brandon's g-tube. I think I mentioned that the g-tube was bleeding out the sides when we were admitted. It turns out there was a significant infection in the g-tube and it needed medication to clear. We needed to remove the old g-tube and replace with a new one. Dr Zweinner decided for now to place a long regular g-tube and not the kind Brandon had in previously. This allowed the site to clear and allow time before we place a new mic-key. I know alot of medical talk, but the new mic-key opens like a beach ball and is flat to the stomach. The old kind that he has in currently hangs about 5 inches out of the stomach. If you are an active kid the risk of pulling it out are very high. So we need to repair this before we go.
The second issue is that Brandon's condition possibly was worse because he may have been aspirating on Saturday before we were admitted. His swallowing became worse on Friday and Saturday before we were admitted and I was worried about aspiration. Because his lungs are so bad now I don't want to go home, have Brandon start to eat and drink and end out back here because he is aspirating food or drinks into his lungs. So tomorrow we are doing a swallow study to check for any aspiration. If he is aspirating we will have to change his diet until he is stronger.
The last more irritating issue is the one I want addressed before we go. Remember the reason I started this blog is because Brandon had surgery on his foot. That was over 7 weeks ago and this Thursday the cast was to come off and the brace we had molded would be placed. I don't know if you have ever had a cast on, and one on for over 2 months, but the only thing you want is to have it off. The site has healed and he is ready for the foot and leg to be out of a cast. So this is the irritating thing. We were afraid that the surgery site had become infected and had to remove the walking cast Brandon had on that Scottish Rite put on 3 weeks ago. He was up and walking on the cast and was only using the wheelchair for long distances. Kind of a big deal when you are in high school. The orthopedic surgeon on call was asked to contact Scottish Rite and see what they wanted to do when we found out the surgery site was fine. It was Labor Day weekend and an intern at Scottish Rite said to put the cast back on, so the orthopedic surgeon put the cast back on but not for walking. I complained that we were going backwards and not forwards. So again this weekend the ortho guys came back and placed a splint that can be removed, but you cant walk on it. I complained again and they said they could place the brace if Scottish Rite would ship it. So now we are in between the two hospitals and Brandon basically may leave here without being able to bear any weight AGAIN. Okay I know - blah blah blah. But it is irritating.
Bottom line we are looking at a possible mid week discharge after we try to get his lungs clearer, breathing better and these three issues above. When the intensive care physician told Brandon we would be discharged this week he started squealing and clapping for joy. It was great to see. More tomorrow.
Leah
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