Today was a long, tough day.
My mom and sister came yesterday from Illinois so we had decided to go over to the hospital a little later than I usually do. Nothing was going to be happening this morning anyway. Or so we thought.
After the procedure yesterday, Dr. G said that he wanted to let Adam have a resting day where he was able to get his full nutrition so he cancelled the previously scheduled visit to IR. But early this morning I got a text from Craig saying that though the orders for the IR had been cancelled it was not showing up on the computer that way. Besides, the doctor that was to perform the procedure would be here today but NOT tomorrow. So it was a God arrangement.
When we arrived at the hospital Adam was still down in the IR so we waited for him to be returned. One of our friend nurses had a patient leaving today and offered the nicer corner room to Adam so after his return upstairs he was to be moved to a room with a much better view and more sunlight. When he was brought upstairs to his unit he was sound asleep and remained so while we were moving to the new room. So when he woke up, he was in a different room. He was a bit confused by that.
During a dressing change with his new nurse (because he changed rooms) some of the infected fluid in him just started to come out of him through his skin which was kind of a strange surprise. They had to figure out a way to protect him from having that damage his skin and also contain the liquid without putting in another new drain. The prospect of that was so discouraging to Adam.
They put out a call to the med team and the surgeon to see what they suggested to do with this problem and we saw the med team doc and eventually the surgeon. This is the man we have been wanting to talk to for a while but he has been in surgery every day recently doing transplants. We finally got to have a good consult with him although what he told us wasn't exactly what we wanted to hear in terms of speed of recovery.
Dr. K feels very strongly that surgery at this point is still far too risky and does not recommend it to be done. Going in and trying to "scoop out" the areas of infection sounds like a quick and easy plan for moving along the recovery process but it is not without chance of great risk of dangerous complications and even death. Naturally we don't want to take these kinds of chances just to hurry things along so we agreed with him that we should prudently wait. Seemingly not what we wanted but I have to confess that in my gut I have felt surgery was not a good idea yet for a while now. Two of Adam's other doctors whom I respect greatly have shared those feelings. So as much as it would be great to have a shortcut to better health for our son, it is not a safe path.
Through our talk with Dr. K he suggested that the nurse put an ostomy bag on the leak that had recently sprung and she did with great success. One problem solved.
I need to say here, too, that the scope that they did yesterday showed that there were no holes in the area that they checked and things are healing in there. That is good news and we are grateful for it.
But the reality that he will have to continue to wait and see how things work themselves out in the manner which they are now is very disheartening to Adam. He feels like he will be here forever and that his life is horrible this way. I don't blame him. It is hard. He suffers a lot of pain and having been dealing with this for 4 months as of today it is hard to imagine that he will ever get better since it is so slow and difficult. Saturday night he had a couple blood clots in his leg. It seems like there is something new all the time and yet we make minuscule steps forward.
Please pray for his mind, his spirits, and his heart to be able to work at the things he needs to do to slowly get better. We appreciate your love and concern for us. Life is hard, but God is good.