The title of this post says it all, not the news we expected, that's for sure!! Abby and I were both a little nervous for clinic yesterday, she hadn't been feeling any better, if anything, she'd been feeling worse. Abby was certain she was in rejection, I was certain her CMV counts had gone up, not down. We both started feeling more positive after we heard that her echo looked, then we talked about her meds and her symptons, and we were feeling even better. But then, Dr. M listened to Abby and heard a definite gallop in her heart, which can be a sign of rejection. Before scheduling a cath/biopsy, they decided to do an EKG to see if it showed anything abnormal......it also looked good! Now we were feeling real good and were packing up our bag to start the drive home. That was when the tranplant team came in and told us that with Abby feeling as bad as she had (extra fatigue, upset stomach, etc.) and with the gallop, they wanted to go ahead and schedule the biopsy. The soonest they could fit us in was 2:30 so Britt, Abby, and I headed to Gateway to spend some time. I knew that they wouldn't let us go back to St. George until we got the biopsy results back today, so I sent Britt home on the shuttle that night so she could be at school today. The St. George Shuttle should really be loving the Doman's by now, I swear we are keeping them in business! I wish there was a ride 10 times, get one free punch card or something! Thanks to my Aunt Diane for driving Britt to the shuttle, I couldn't leave PCMC during the cath to get her there, she was a life saver! Now it was time to sit and wait for the pager to go off to tell me that Abby was done. The cath usually only takes about an hour, sometimes even less, but yesterday it took about an hour and 15 minutes, and every minute past the 60, I was getting more and more tense! When it finally went off, I was so sure that there was a problem, that I had prepared myself to see the whole the transplant team sitting in the little office by the cath lab; But, it was only Dr. Day, and he only had good news! In fact, he said that Abby's pressures looked even better than his :) Now I was feeling really good about the biopsy results we would be getting, last night I had even convinced myself that we would get a call today at 9:00 am, telling us that the biopsy was clean and to go on home! But, it didn't happen that way.
We didn't get a call at 9:00, or at 10:00, and then my impatience took over and I called the transplant coordinator and left a message to call me and please let me know what was going on. In my mind, the reason they hadn't called was because she was in rejection and they were trying to figure out how to treat the rejection and the CMV at the same time. So much for the positive thoughts of a clean biopsy! Dr. Molina called me back at about 10:30. You know it's not good news when the doc calls instead of the transplant nurses! She said that Abby was in mild rejection, nothing too serious, but with her CMV, they wanted to talk to infectious disease to see what should happen next. I got the feeling from the phone call that we would be admitted again and started back on the anti-viral IV as well as up her immuno-suppresant drugs to fight the rejection. Dr. Molina told me she would call me again as soon as she heard back from them. Not the "go on home" news we expected! I prepared myself mentally for another 2 week hospital stay. At noon, we got a call from one of the transplant coordinators that the infectious disease team was having a meeting at 12:00 to discuss Abby and that we should hear back at 2:00. So, Abby and I did some more shopping, then went to a park and laid on a blanket, and tried to read and relax (hahahahaha)! Finally, at 4:30, I got the most unexpected phone call of the day. They didn't want to admit Abby, they didn't think the anti-viral was doing the trick (obviously since she was getting sicker, not better) so a hospital stay for that would be worthless; BUT, they think that Abby has another infection somewhere in her intestine. She's had an upset stomach and diarrhea for the past month or so, and we've been contributing it to the CMV. But they didn't think that the level of CMV that Abby has would cause as strong of symptoms as she's been experiencing, they think there must be something more going on. So, they were in the process of scheduling a colonoscopy and intestine biopsy......yes, another surgery. For those of you that know anything about this, they are going to be going in from both ends, I guess they want a really good look. I couldn't help but to think, CMV, rejection, and now another infection too, are you kidding me????? Later, we found out that the soonest they could schedule the surgery is Thursday around noon, I should get the final time tomorrow. We also need to go back to the lab tomorrow so Abby can have even more labs drawn, they are going to look for lots of different things! My poor, sweet Abby has had enough. I've never seen her so discouraged and worried. I think the straw that broke the camel's back was when they told her she had to collect a stool sample tonight.....how do you tell a 12-year-old little girl she has to do this?? Her coping mechanism is just to sleep. As soon as we got to my brothers, she went straight to the couch and has been asleep ever since. It kills me to see her feeling so low, I just hope that somehow she can wake up tomorrow with some renewed strength, ready to fight again.
I hope the same for myself. We have both hit our low point, I think we've bottomed out. The roller coaster of emotions today and yesterday has been tough on us. It's been a constant fight to think only good positive thoughts, only to have crappy news hit us right after. I don't even know what to think about the surgery Thursday, I know nothing about it! I don't even know what to ask, it kind of hit us from out of nowhere. Not only that, but yesterday at clinic they also told us our Make-a-wish cruise next month wasn't looking good for us either. If her CMV counts didn't go down, we would have to call and postpone. You should have seen the tears in Abby's eyes when we got this news, it would've broken your heart! It's just so hard to see the discouragement in her face. For now, I've had my meltdown, talked to some friends that knew what to say to help me, and I know that tomorrow can't be as bad as today. I also know that things will look better in the morning when I'm not exhausted. We can feel everyone's prayers, they do give us more strength to deal with things. Britt and Brock will go another week without us, so be extra good to them if you see them, they probably feel like orphans and that they've been abandoned. At least my mom and dad are around this week and will help take care of them, thanks again mom and dad! I know that we will make it through this. I honestly feel like they are going to do all of these tests and not find anything, that it's just Abby's way of responding to the CMV, but since I've been wrong on everything today, I'm probably wrong on this as well.
I know that this post is a little jumbled, and that I couldn't decide whether to use present or past tense as I was writing, and that I kept switching back and forth, but to tell you the truth, I'm too tired to care. I've got too many other things on my mind, hopefully you could at least make sense of everything. Thank you all for caring so much about Abby and the rest of us, we love you all.