It's been a long week, but it's been nice not to have to drive back up to Salt Lake today, it was actually really relaxing. I loved watching my sister, Meri, and her hubby, Rich, compete in the Ironman yesterday! Despite the horrible, windy conditions, they both finished and are once again Ironmen/women! Pretty impressive, although the making out as they crossed the finish line together, was a little cheesy :) One of these days soon, I would like to start training for my little sprint triathlons again. To me, they are like an Ironman, especially now when every time I try to workout, I feel so tired, like I've never been fit in my life! It will be time to get going again soon, it's just around the corner. I keep thinking that it will be easier when things start to settle down.....the problem is, we're just not getting to that point yet!!!
Tuesday, right when I got home from school, I got a call from PCMC. They said they wanted to schedule Abby's annual biopsy. They want to schedule it a little early because of the rejection she was in last time, so we scheduled it for June 8th. This biopsy will be a little different than the others because they will go through her leg instead of her neck. After the biopsy, she'll have to lay still for 6 hours. Abby had a cath just like this the 2nd day we got to PCMC, on May 19th. This was the night that as soon as she woke up from the anesthesia, she had to go to the bathroom, but since she couldn't move she just had to hold if for about 4 hours. It was awful!! They were going to put like a puppy pad under her, but Abby would have no part of that! We just sat watching the clock. I remember it so well, we were supposed to wait until 12:00 PM for her to move, but at 11:45, I couldn't stand it anymore, so I begged and thankfully they let her get up and finally go. I bet she doesn't drink much before this surgery.....lesson learned! This biopsy is important because it will be the baseline for future biopsies and caths, it will be the one they'll always look back at to compare with. I'll be nervous, but I always am. Abby won't, but she never is :) It will be a huge relief if it comes back clean, with no rejection!
Not even 1 minute after I hung up from this phone call, my phone started ringing again, and it said PCMC again too. I thought for sure it was the tranplant team, but it was the surgeon that performed Abby's colonoscopy and intestinal biopsy last week. One thing that I've learned this past year, is that it's usually not good news if the doctor calls instead of the nurse. I had actually forgotten that they hadn't gotten all of the results back from the biopsy, I thought everything came back and looking good, so when he said who it was, I was in a little bit of shock. He proceeded to tell me that the biopsy had shown that Abby has a problem called eosinophilic colitis. There are many different types of eosinophilic conditions, but Abby's is in her large intestine/colon area, this makes it more rare. After reading about the symptoms of EC, it's fits Abby quite accurately. She has a constant upset stomach, diarrhea, stomach pains, no appetite, fatigue, etc. He said the only way to diagnose this condition is with a biopsy, so it was a good thing we went through that, I was beginning to think the whole surgery was worthless. The doctor said that the cause of Abby's EC is one of two things: either it's from food allergies that have developed since she started taking her immuno-suppresant drugs, or it's from the actual medications themselves. On Tuesday, she's having some labs done to look for food allergies, and then we'll go from there.
After I hung up from talking to the doctor, I was feeling so relieved because at least they finally found something, we were all starting to think that maybe Abby was just depressed or something. But then I started learning more about EC, and I wasn't feeling so good about things. If it's a food allergy, it's not going to be a little thing, like nuts or fish, it's going to be something big like dairy or gluten. The most common allergy that's linked to EC is protein. Many kids that have EC, end up not being able to eat very many foods at all, they mostly just drink special shakes. I'm hoping this isn't the case for Abby. I'm trying really hard not to get too worried and ahead of myself yet, but it's hard. If it's caused from her immuno-suppressants, that's not going to be an easy fix either. There's a reason they've put Abby on prograff and cellcept to prevent rejections, they cause the least amount of damage to her other organs and have the least amount of side effects. If we have to make changes in these meds, it's going to change her reaction to all of her other meds as well. Plus, we've seen how well Abby handles going off medications, she always has a problem, it's the "Abby way!" No matter what the cause, at least we'll be moving forward now and we will deal with whatever comes our way.
We need Abby to start feeling better. I feel like I've been saying that for a long time, but at least now we know why. She's to the point now that she doesn't want to eat.....ever. We have to force her most of the time. Today, I heard Britt ask her if it would be easier to just have a feeding tube in, and she said "Yes, I wish I could!" That just shows how bad it's gotten. Her stomach just doesn't ever feel good. Since she's not eating very much, she's very lethargic, and yesterday she started having problems with being light-headed. I'm doing everything I can to make her eat, we've tried everything, and she just doesn't want to, it makes her feel too crappy! I feel like this isn't going to be an easy hurdle, I think that it's a good thing we have the whole summer to work through it. I just have a feeling that the road ahead is a little bit rocky again.
Please continue to pray for her and for the GI doctors and transplant team and that together they can figure out what to do to make Abby feel like Abby again. Abby has just had one thing after another since her transplant, it's hard not to feel a little bit beaten up. Sometimes I just get so discouraged, but then I try to remember that we're not even one year post transplant yet, and everyone says that after that 1-year mark, things do get easier. I'm trying to tell myself that we're just going to encounter everything this first year so that the rest of Abby's life will just be smooth sailing! Abby still has her strong attitude and determination, she's just taking it all as what needs to be done, it is what is, now let's deal with it. The kid is truly inspiring, I don't know how she can always handle things with such poise and composure. I can't help but to learn from her example every single day.
Thank you all for your continued thoughts and prayers!!