Thursday, September 6, 2012

Some good news and something to worry about......

I know, I know....I think this is the longest I've gone without writing a blog post, but that's because things have been so good! We've been in school for 4 weeks now, and Abby has only missed one day; well actually today was her second.  She's already been in school more days this year than she went her entire 7th grade year.  She's loving it, but she does get tired, it wears her out.  It was good to hear from the transplant team today that she's not the only transplant kid with this problem.  Hopefully, she'll get more used to it as the year goes on.

So, we had clinic today, we haven't been there for 5 weeks!  We had to have labs drawn last weekend because we made some adjustments to Abby's meds because her swelling in her feet and legs has gotten so much worse since school started, so we wanted to make sure all of her labs were still where they were supposed to be.  So we didn't have to have any blood drawn today, which was a nice change!  We did have to spend time at the Moran Eye Center to follow up on Abby's CMV.  Thankfully, things looked perfect, it didn't spread to her eyes, so we're all clear as far as her eye's go.  The eye doctor actually said that if we WANTED to come back in 6 months, we could!  We both just laughed, like we would really want to go back if we didn't have to!  It was nice to cross that problem off of the list though.

After our time spent at Moran, we went back to finish clinic.  Abby had already had her echo, so we just needed to talk to the transplant team and the doctors.  It was actually fun to see them and catch up a little bit, it had been a long time.  They said that Abby's echo looked good, in fact, perfect.  We talked about her pulmonary hypertension again, it's not going away and they pretty much told me today not to plan on it ever going away.  Since we're a year out of transplant with no change, it's probably not ever going to change.  Dr. Molina was so patient and gave us a whole lesson on what pulmonary hypertension is and why it causes Abby's feet to swell.  We have a few things we can try, and if things get worse, we might have to make some med changes in the near future, but we have a bigger issue to deal with first. 

Last time we were at clinic, I heard them mention that Abby's kidney function was down a little, but nothing to worry about, they just told Abby to start drinking more water. Today, Abby's kidney function was down more than just a little, it wasn't good.  They discussed referring her to a nephrologist (kidney doctor).  We decided that Abby is going to work really hard on increasing her fluid intake,  then she's going to have labs drawn again in two weeks.  That will then help us determine what we'll decide what to do next.  This could also be adding to the swelling in the feet and legs.  I know that her anti-rejection meds are hard on her kidney's, but I didn't think this was anything we'd have to think about and deal with for 20 years!  Nobody knows why Abby's already having some problems, I guess it's just Abby's way.  We're just going to start praying now that in 2 weeks things will look better and we can put this problem to rest for 20 more years.

So....... heart function=good.  Blood counts=good.  Other labs=good. Eyes=good. Pulmonary hypertension=not so good, but it is what it is, we can cope.  Kidneys=not so good, our biggest worry right now.   Next clinic date=good.  Two whole months until they need to see us again, unless things don't look good with her labs in two weeks.  

It was an exhausting day, clinic and all the driving make me tired.  Tomorrow it's back to school and and then I have to spend time dealing with the insurance companies.  A girl decided not to look while she was backing out of the school parking lot a couple of days ago, and crashed right into Brock's car and left a big dent.  Brock did a great job taking care of things until he could get a hold of me.  I don't always look at my phone while I'm teaching school, so I didn't even know he called, so he called the insurance company and the cop and started the process.  What a great kid!  Tomorrow we drive to Cedar City to watch him play football, which is always fun, then Saturday we head back to Salt Lake for my nephew's missionary farewell that's this Sunday.  It's been a crazy week, and we're just getting going!  If you see Abby anytime soon, tell her to get a drink!


  1. Aw, Michelle. We love Abby and will absolutely be praying for her! I know one thing that makes it easier for me to drink lots of water (I try to drink 9 cups a day) is to add some fresh lemon slices in there. It makes it taste a little better to me. Maybe that would make it easier for Abby to drink more! I'm praying hard that her lab work comes back good! Your a good mama and Abby is fabulous! Glad everything else is okay! Sorry about the hypertension, though! :)

  2. Hopefully higher fluid intake will help her kidneys!!! But yay for all the good things that came out of this salt lake trip! More things to be grateful for than not and a few things to keep reminding you to stay strong in your faith! you guys are such an awesome family! <3

  3. I hope & pray that her kidney function finds a way to improve. I think of Abby often & will keep her in my prayers.

  4. Hi Abby

    My name is Jenna. You are a brave courageous fighter. you are a special miracle from god, a gift from above, earthly angel,and you are a smilen hero. You are full of happiness, life, smiles, joy, fun,love, and spunk.

    I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.

    I wrote this poem
    Each of us are Special
    Each of us different,
    No one is the same
    Each of are us are unique in our own way,
    Those of us who have challenges, we smile through our day.
    Those who of us who have challenges, we smile through our day.
    It doesn't matter what others say
    we are special anyway.
    What is forty feet and sings? the school chior

  5. yay for a good clinic! And boo for hypertension. We deal with that too. So glad life seems to be getting more smooth! You know what is REALLY hydrating? Celery and cucumber juice. Yep. And kidney cleansing too. Try it out, it's not that gross I promise. Have a fun weekend! :)

  6. I am so happy for good clinic visits. The hypertension is kind of sad, but I am sure they will control it. The kidney stuff is something I have had to worry about with Hope since she was born. A little piece of advice...limit the amount of protein in her diet if possible. Hope has been on a high calorie, high fat, low protein diet since she was born ( is not so easy finding food like that) and her kidney numbers have been pretty good. She only has one functioning kidney and it is cystic, so it will probably fail in her lifetime. Combine that with her half a heart and it is even harder. Most of the medicine (Enalpril and Lasix) have diuretic tendencies, so we Hope has not taken them for a while. Her last blood test came back all normal...the first time in her life. I hope that helps to get Abby's numbers back to normal. I will continue to keep her and your whole family in my thoughts and prayers.