Today has been a rough day.
We started out the day tired. Adam was tired because they got him up at 11 p.m. last night to do a CT scan and because he is ill. I was tired because Monday night was a late night and yesterday was an early morning. When I opened my eyes this morning after hearing my alarm I wasn't sure if I was home or here. Reality became clear quickly.
Adam had been told yesterday that he would be heading to the IR (interventional radiology) today to have some things done. Because of that he was NPO (nothing by mouth) since midnight last night. The only thing he gets to have by mouth are clear liquids. His nutrition comes through a feeding tube.
We've been waiting all day to find out what time he would be able to go down to IR. Sometime after 3 p.m. this afternoon his medical team came in and the attending asked if he could sit down and visit with us. He told us what we are dealing with today.
Adam has been losing some of his nutrition somehow and has lost more weight. Remember, he has already lost at least 40 pounds so that is not a good thing. They did a test yesterday right here in the room where they put some pink colored Ensure type product through his feeding tube and as they suspected it mostly all came out through his biliary drain tube. So NOT getting to his intestines to "feed" him. So they suspected that either 1) his J tube (the feeding part of the feeding tube) has gotten coiled up or misplaced in the intestine or 2) there is a leak somewhere in his system that is so microscopic that it has not shown up on the CT scans they have done recently. This leak could also be the cause of his white count having been elevated consistently over the past week. OR it also could be because he has another pocket of fluid in the other side of his abdomen which has been causing him intense pain for the past week.
So he needs to have some comprehensive tests to find out what is going on along with fixing the 2 drains that come out of his back that are leaking and causing him pain. Also, they will be putting another drain into that pocket of fluid to get the bad stuff out of him. [For those of you keeping score that will make 7 drains]If the J tube is coiled they can readjust that and do whatever else they need to do while he is in the IR. They told us they would TRY to get him in during the morning hours but that would probably be a wonderful surprise. NPO again tonight--yippeee! BTW when the doctors had given him all of this information he said "You mean I could have had a drink of water all day and you are just now telling me?"
They also told us that because of his nutrition being lacking for a while and his muscle wasting that if his feeding tube needs to cease for a while he will go on TPN which is a feeding through his picc line IV. Which means at least another 2 weeks in the hospital if not longer. As you can imagine this was devastating news since we originally were told he might leave tomorrow until the white count went up. Then we were hoping for the weekend. I can assure you that all I wanted for Mother's Day was to have my son home and our family back under one roof again. But this will not be happening.
My heart grieves that my son had to ask the doctor today "Is this going to kill me or will I ever get better and get out of here?" The doctor said he believes that Adam can beat this. I do too. But today has been hard. Disappointing. Draining.
Our family covet your prayers. And if you have any creative ideas on how not to go crazy after many months in the hospital, we would appreciate your suggestions.