Thursday, November 1, 2012

.....and the final diagnosis is?????

     It sure wasn't a very exciting day around here today.  Abby was a superstar last night and finished all of her cleanse, and it did the job.  She woke up feeling clean and empty, but unfortunately, she still had her upset stomach.  She also woke up with a bad sore throat again and a headache.  She actually said that it was one of her worst days yet!  Talk about feeing discouraged, after 3 days here, she was feeling worse!  Abby slept most of the morning and the doctors were nice and just left her alone, but I joined them when they were rounding about her.  They decided to do a strep test, even though they really didn't think that was the problem, but the results haven't come back yet.  The good news is that the labs from the 3 major transplant viruses all came back negative, yahoo! But, that's also bad news because we still don't know what virus she has, it's impossible to test for all of them.
     Even though we didn't figure out what she's sick with while we've been here, I think it was a good thing we were admitted.  The transplant team was able to take care of her blood pressure issues and they also decided it was time to make some major medication changes.  Abby has had chronic headaches, and after really researching and discussing, they decided it's probably from her pulmonary hypertension medication, so they're going to try to taper Abby off it and increase her blood pressure instead.  We're just hoping that her headaches go away, but her leg swelling doesn't come back, that's our major concern with going off this medication.  After the GI team and transplant team got together, they decided that some of Abby's stomach discomfort is from another one of her meds, Valcyte, the one med that my insurance company didn't want to pay for anymore, it prevents CMV.   So, after Abby tapers off of her steroids, they are going to take her off of  Valcyte.  Last time she went of this med, she immediately got CMV, so we're praying that it doesn't come back this time.  Abby's white blood count is still low, so she's still got something, but we all decided that unless she gets worse, she can recover at home as easily as the hospital.  An immuno-suppressed kid can take up to 6 weeks to get rid of a virus, so we might just need to be patient, not a patient (hahahahaha, my humor gets warped after spending time up here!)  Dr. E. thinks that the rejection is under control now, but we won't know for sure until Abby's next biopsy which is next Friday.  It's going to be a nerve-racking week, it will be a real relief when we get those biopsy results.  We didn't talk to the GI team today because they were still waiting for results from her Celiac panel.  I think they're going to want to monitor Abby a little more closely for a while.
     Changing all of these medications can be a little stressful, Abby hasn't had great success in the past with that, but wouldn't it be sweet if it took away her headaches and her upset stomach?   I'm just hoping that the next few weeks work perfectly, no more rejection and no problems with her medication changes, and that this crappy virus goes away quickly!!  The plan tomorrow is that the GI team will meet with us again and decide on a plan of action for her stomach issues, Abby will also need another echo before we can go.  The transplant team wants to see us again to talk about her new med schedule and about her steroid taper.  They're also planning on monitoring her pulse and her blood pressure very closely for the next little while.  Then hopefully we will be discharged and on the road by 12:00 so that I will make it to Brock's game at 5:00.  Dr. E. is amazing, she followed through with her deadline just like she promised (I hope I'm not disappointed tomorrow, because this is what I'm planning on!)  She knows how much it means for me to be there for Brock, and that's what I love about her, she gets it.
    Overall, when I asked Abby how she was feeling, she said that she probably could've gone to a couple of classes of school today, but she didn't think she could make it through the whole day.  She's also worried that her cheeks have gotten bigger, but I honestly don't notice a difference, she looks just as cute as always.  She's tired, it's just really hard to sleep here, and she knows that she will have to be extremely careful about germs when we get home again, just until she's tapered off of the steroids a little more and when her blood counts are up again.  But, she wants to go home, really, really bad.
     How am I doing?  I am okay.  It's been a frustrating week, but very worthwhile, we learned a lot about Abby and about some things we can do to make her feel better.  I am tired, physically and emotionally tired.  I feel like I've been on an emotional roller coaster for the past couple of weeks, and I don't think it's going to end quite yet, but we're getting close.  I felt so bad about my chat with Dr. E yesterday that I apologized to her today.  I didn't feel bad about what we talked about, that actually made me feel better about things, but I didn't like the way I approached it, it just wasn't like me and it made me feel uncomfortable.   I told her that I was just so discouraged about things and so extremely tired, but that I didn't ever want her to think that I didn't completely trust her.  She said that she actually felt really good about the things we talked about and that she was grateful to me for speaking up and letting her know.  She also said that she was also discouraged and that she loves us and that it's hard for her to see us feeling so frustrated.  I love that we have such open lines of communication, I think it needs to be this way.  I do love our transplant team and we are so grateful for them and for all of the time they spend helping Abby and doing what's best for her.  I know that they would do anything for Abby, and for that I am thankful.  We know that we are in the best possible place we could be and that Abby will always get the best care here.  The nurses and techs here are all so incredible, they always make us feel like we are VIP's, they do an excellent job of going out of their way to make us feel comfortable.  It really does feel like Abby is their favorite patient, and that's important.  We are just so thankful for everyone that is involved with Abby's care, we feel like they were hand-picked just for us, we couldn't ask for anything better.
     I feel like it's time to go home.  I can watch her closely there and I can also take care of the things at home that I need to be doing.  Maybe I can get caught up a little  before our trip back up here next week too.  I'm not really excited to go home to my house which is all full of germs from Britt and Brock throwing up this week.  I'm probably going to have to fumigate the whole place before I can allow Abby to step inside!  But, we'll do what we have to do.  I'm really hoping that Abby is feeling better before her biopsy next Friday, I don't like her to be in the cath lab when she isn't feeling good, it makes me nervous.  So, Abby's got about one week to start feeling good again, she can do it!   Overall, things are just okay, they could be better, but they could be worse too.  I think I'm going to do everything I can to make myself be grateful for at least having things be okay for now.



  1. I really really hope you get home tomorrow! I have a visual of you following Abby around in a cloud of Lysol! Loves!

  2. So I just caught up on everything! I'm so glad you get to go home! Kick those bugs. I hope you get some real rest on your real beds!