Back up to Friday night after the procedures...they extubated Ian around dinner time, it went much better then they expected. They did have to add a few other medicines to his normal ones in order to help keep him calm during the extubation. In addition, once in the room they were able to place the ND tube...all a good thing. Now they can begin feeding him thru that instead of the TPN thru the PICC line. Thank you to all who were at the hospital and came in on Friday....Friday night, Brian went home to sleep with our friend, Scot....as for me, I slept at the hospital with Ian. It was a long night...Ian did not sleep much, he was in a lot of feet and leg pain. This is not any different from what we deal with at home sometimes. In addition, blood work was done and another chest x-ray. His white blood count was elevated again, up to 18,000. They doctors were not overly concerned at this point because steroilds can increase them, so they wanted to wait and see what Saturday night levels were before getting concerned....Saturday nights were down to a little over 16,000. They are going in the right direction leading the doctors to feel that they increase was becuase of the steriods not anything with the pneumonia or another type of infection. As for the chest x-rays, they have been going back and forth...from seeing an improvement, to them remaining the same, to seeing a little bit of a negative change. Based on the x-ray findings they have been changing the bi-pap settings. We are hoping the changes in his x-rays are just because they were moving to fast for Ian and his body was not ready for the changes they were making.
Another one of the big issues they are working with is his pain...for those of you whom are around us on a regular basis, you know that his pain is a constant thing. At home, it usually comes at night, any hour of the night. Sometimes we are able to give him things to help and other times we are not and we are up the whole night. Well since Friday night, it has been much worse then it has been in a very long time....not only is he having it at night but during the day as well....so this morning the pain management team came to see him. They are trying a few different things. Most of the pain medicines they could give him usually have an impact on ones respiratory status; the medicines they are trying do not. We are hoping that this will help because Ian really needs to get some sleep....Brian said last night (Saturday night) was pretty much the same as Friday night, so Ian has not slept much.
Ian's final RSV test came back normal, so no RSV for him...we are waiting for the infection control staff to tell us we can come off precautions, no more yellow gowns, face mask and gloves for us.
So as for today, we are just hanging out, trying to work on the pain. I don't think they are going to make any changes to his bi-pap as this point...even if they did, I think that based on his pain level he would be extremely worked up where they would just need to increase it again. Brian has gone home, I am at the hospital with my parents. They will go home soon and I am hoping Ian and I will have a quite relaxing evening, night.