May 3, 2011
We were admitted to the hospital on Monday evening following our GI appointment and lab work. We stayed on the 5th floor this time due to overcrowding on the Hematology floor (4th floor). The nurses were slightly confused as to what, who and when. Rylee was in a GREAT mood Monday night. She walked across the parking lot to watch girls practice softball and even retrieved a few balls for them. A little while later I spotted her and Danny walking further away from the hospital grounds and followed them only to notice that he was taking her to the Audubon Tennis Court. The court was of course locked, so he searched the grounds for tennis balls and we all played ball for a while. We tried to keep her away from the room as much as possible just to help her anxiety and anticipation. It seemed to help a lot considering the laughter and mood she was exhibiting. That soon came to end when the nurses had an extremely hard time getting her IV in her arm. They tried several times, it was the 4th try that seemed to work, but they could not draw blood. Lab had to come draw blood and I thought she might jump out the bed and run, but Leroy from the lab was WONDERFUL. He talked to her, made her laugh and he even put the tennis balls in her shirt (the price he had to pay for sticking her again) and did a jig! Boy did she laugh and so did Danny and I. She finally went to sleep at around midnight and was given platelets at 5:00 a.m. Danny and I questioned the nurses a lot due to the confusion when we were admitted to the floor and our gut feeling was confirmed at 8:00 a.m. The day shift nurse informed us that the night shift nurse was suppose to give her 2 units of platelets and only gave her 1. That is what Danny and I kept questioning but were informed she was receiving 2 units. I thought Danny's head was going to explode when the day shift nurse told him! It delayed her scope only by half hour but she did need to receive the rest of her platelets during the procedure and have another IV put in her other hand. Poor thing had two IV's and couldn't move either arm. She walked her down to the procedure room at 10:00 and at 10:25 Drs. Monagus and Noel came to talk to us about the findings. They did not have to band any varices this time!!! They did see a small varices but it was way too small to band. She will have to have another scope in 5 weeks. They did find a small ulcer and did a biopsy to see if antibiotic treatment is necessary. She will be on Zantac now for the ulcer but the good news is that she can now swallow pills. Which she seems to enjoy much better than liquid! Her esophagus looks like a normal esophagus at this point as well. Her spleen has not gone down since the last scope which is not great news. If it does not go down, we are definitely looking at surgery in the summer. She needs to have IVIG procedure before her next scope as well. Her hematologist seems to think that she has some antibodies in her blood that are eating up all of her platelets. This will be done in the next few weeks before the next scope. It is a two day procedure where she will be hooked up to an IV for 8 hours each day. We will have to spend one night in the hospital and then go home after the second 8 hour treatment. Hopefully this works to raise her platelet level.
Rylee is trying her hardest to hold up. She is starting to have a really hard time dealing with all of her medical issues, being in the hospital, school work, being away from her friends, etc. She does not understand why she has to go through all of these things. She hasn't complained and just goes with the flow, but Danny and I have noticed she is not herself. Danny and I are trying to keep things together the best we can for her and dealing with this ourselves. She is struggling but still smiling! The doctors said that this is all way too much for an 8 year old to handle but she is one of the most courageous, brave and strong little girls they have ever treated! I thought I was suppose to teach my child about life, but she is definitely teaching me more than she will ever know! We could not be anymore proud of her! Just keep praying for her!
