The last I updated you, Kaley was supposed to go in for a procedure on Tuesday night after getting another blood transfusion to drain a couple abscesses they had found and was in a large amount of pain. They came in Tuesday night to say the procedure had been moved to Wednesday morning because all the team members had left for the day. Needless to say, I was NOT happy and a few managers had to get involved plus I had them call her GI dr at home but unfortunately they could not get it done that night. They told me it was scheduled for 10 am so I made sure they would give her good pain meds all night long to keep her comfortable. Sadly, even on the pain meds, it was unbearable for her
Wednesday morning came and it was after 9 am and I hadn’t heard from any Drs and was very frustrated that I didn’t know what was going on. Finally, the GI dr came in around 9:30 to say she had been on the phone all morning trying to get things finalized and the procedure would be at 1:00. UGH now 3 more hours of Kaley having to be in pain. Again, I wasn’t happy. Luckily, about 15 minutes later, they came in to say there was a cancellation and they moved Kaley to the top of the list. THANK GOD !!!!
The results of the procedure to drain the abscesses actually revealed that there weren’t really “abscesses” but just a lot of fluid around her inflamed/irritated organs which in a way is a good thing but painful nonetheless. Basically they think she just needs to rest all those organs and keep reminding me that this was MAJOR surgery and very painful. They have to cut a TON of membranes that hold the intestines to the abdominal wall and that in itself is painful. Then add in the fact that she has pancreatitis from some of the meds she was on for her colitis and there is just a lot of painful things going on inside her. I have been on message boards and had friends talking to other friends that have had this surgery and they ALL say they were in pain like this after the surgery for many many weeks.
That day was probably the worst day we have had since the day she had to be rushed to emergency surgery. She was in SOOO much pain and her pain meds weren’t even putting a dent into cutting the pain; she was in tears and screaming and I was heartbroken and pretty much telling nurses that she needed more meds and that I didn’t care if she was already maxed out. NOT A GOOD DAY.
However, yesterday (Thursday) was a much better day painwise. They got a Fentanyl patch for her to wear that releases pain meds constantly so she doesn’t have the spikes of pain and is no longer on morphine which had stopped working for her anyway. She didn’t complain of pain even once yesterday and was back to her smiley self (this girl is amazingly strong I tell ya).
They let her start eating “liquids” again like jello, Popsicles, applesauce, etc but all she has wanted is some water. She is still on the TPN (which is the IV nutritional food) so she is getting all the nutrients and proteins her body needs. She even has gained a few pounds back (she had lost over 20 lbs since getting sick and was tiny to begin with). NO word on when we are getting out of here though.
We did get GREAT news from Hospital Homebound. All her absences and grades will be wiped out completely and even though they don’t offer HONORS classes, she will take the reg classes through their program and get grades which transfer over to her school. We can do this program the whole school year since she has 2 more surgeries to complete still. And when she is up to it, she can go half days to electives like band and student government. When she isn’t feeling well, they understand. There are no deadlines for any work and her credits will be given when she completes the classes no matter how long that takes. This was an answered prayer for sure !!!
Minnie Mouse brought a Dori stuffed animal so now I keep telling Kaley “Just Keep Swimming, Just Keep Swimming” and we will get out of this hospital soon !!!