Charity's blog

Thursday, September 7, 2017 - Moving in the Right Direction

Hello friends! I can't believe it's already been almost a week since my last update!  We're settling in here at the Ronald McDonald House, and it's been very nice to be out of the hospital and all living together.  The place is starting to feel a little like a home away from home and we're slowly getting settled in and into a routine.  Her meds have gotten much easier and I even have her meds and schedule memorized now.  Even though there is more to manage right now we know that it will eventually get easier in time. The good news is that with Mike off work and me working limited hours we have the time right now to devote to taking care of Annabelle.  In some ways this adventure has been a much needed family trip for us because in between appointments and medications we do have more down time to just spend time together as a family. 

Friday, September 1, 2017 - We're Home (at Least RMH Home)

Obviously, the big news of the week was that Annabelle got discharged from the hospital Wednesday afternoon!!  We are now all three living as a family in our Ronald McDonald House apartment. As exciting as this was it was also somewhat terrifying knowing that we were being sent home with so many medications to manage.  Luckily, being parents of a metabolic child we're already used to strict feeding and medication schedules so we knew we were up to the challenge. However, Annabelle has never been on this many meds before and I especially feel very flustered until I get things organized and in a routine.  Our first night here was spent trying to figure out all the meds and formula to put into a system that works for us.  So far ziploc bags have become my best friend in helping us manage her medictions and times. 

Tuesday, August 29, 2017 - "Going to the Zoo"

I'm sitting here in the quiet of our hospital room looking out at the beautiful skyline of the city.  Annabelle has gone to sleep and Mike is back at the apartment resting for the night.  As great as this hospital is we are so ready to be home (at least in our little apartment for now).  If all continues to go well then tomorrow we'll be "going to the zoo" in the afternoon.  We dare don't say the "D" word that means getting out of the hospital because last time we said that Annabelle got rejection.  So around here in 7B we just say that we're "going to the zoo."  I'm working super hard to get the apartment all cleaned up in preparation for Annabelle's arrival!  The pack-n-play and play gym are all set up and waiting for her!  Here's hoping we'll all be together tomorrow evening at the Ronald McDonald House! 

Saturday, August 26, 2017 Rejection Update

Mike and I just wanted to share a quick Annabelle update in regards to her rejection.  Luckily, her liver numbers are trending down and not increasing.  They aren't trending down as fast as we'd like but at least we're moving in the right direction!  Unforuntately, the way to get her body to "accept" this new organ is to increase her Prograf (primary anti-rejection med) and her Prednisone (steriod).  Because of these medication increases she's been much more cranky, restless, tired, and ultra sensitive to everything.  She'll still smile some but not nearly as often.  They should be weaning her steriods down so hopefully she'll start acting like herself again soon. 

Thursday, August 24, 2017 - Mild Rejection

Well today we got the results of Annabelle's liver biopsy and the doctors have concluded that Annabelle has "mild rejection."  Although the word "rejection" sounds scary, it is very common in the first few months post-transplant. Luckily, since it is mild this means that the doctors treat the rejection with large doses of steriods over the next few days.  They will continue to check her liver numbers daily and adjust her medications accordingly.  Hopefully her liver numbers will return to where they were before the spike within a few days.

Tuesday, August 22, 2017 - URGENT PRAYER REQUESTS

As most of you saw on Facebook, Annabelle had a very fun and exciting morning.  First, she had a visit from Rambo the therapy dog...she didn't know what to think of him since he was smaller than the other dogs she's been around.  Next, we got to take Annabelle down to the 6th floor where the umpires from the Pirates game were hosting a Build-a-Bear event for the kids.  Annabelle enjoyed her wagon ride down to the 6th floor and loved seeing all the people!  There were many cute stuffed animals to choose from so we held each one up for Annabelle to smile at....and the Minion won out!  We got a cute pair of overalls to dress him and then also took some pictures with the Pirates' mascot.  Then we took Annabelle outside for a few minutes to the healing garden to get some sunlight and fresh air!  In the afternoon she had the grandparents there to play with her while Mike and I went out to explore Pittsburgh for a few hours.  The grandpar

Monday, August 21, 2017

I know, I know...we've done really bad updating lately.  Saturday was about the same as Friday and yesterday we were busy having a night out!  The Steelers game was very fun and a once in a lifetime opportunity for us!  We also enjoyed eating at Primanti Bros.; we can see why it's famous as their burger sandwich was delicious!  


I wanted to post a quick update so people won't worry, but there's not much new to report.  Today was another great day for Annabelle!  She's still tolerating her feeds well through the NJ tube, and the doctors are slowly increasing her rate by 5ml/hour every six hours.  This nutrition is really helping her metabolism, and this morning her lactate was 3.6 and her ammonia was 58 (they are only checking these labs every day now instead of every six hours so we'll have new results in the morning).  Hopefully by tomorrow she'll be on the continuous feed rate of 35ml/hour and then they should get to the point where they can take her off her TPN (IV nutrition).  If they can remove her IV nutrition then she won't have any long tubes coming out of her central line in her neck which will be great!

Movin' On Up (to 7B)!

As many of you already saw on Facebook, the big news of the day was that Annabelle got moved out of the PICU and up to the 7th floor (7B transplant plant recovery wing).  She did have some trouble overnight throwing up, but we realized that her last three episodes of throwing up came right after she got morphine on an empty stomach (remember her feeds are bypassing the stomach and going straight into the small intestine thanks to her NJ tube).  They were able to switch her to oxicodine today, and that has helped manage her pain without the awful side effects of morphine (loopy, glassy eyes, throwing up, etc).  The new NJ tube is working really well, and she's keeping all of her formula down (even when she threw up after the morphine she only threw up mucus and not formula).  Thanks to her feeds being introduced to her gut, her lactate and ammonia are finally trending down!  Praise God!  The levels still bounce around a little bit, but her last lacta

How Many More Tests?!

What a day!! I know how blessed we are to be at such an amazing hospital and I do not want to take that for granted.  However, Mike and I are very drained from hospital life already.  If you've never had to live in the hospital there's just so much waiting around and test results or orders just take FOREVER.  It's very frustrating when teams of doctors aren't on the same page or when there's so many things to balance and they try to treat one issue and another one comes up.  We are all drained; especially poor little Annabelle.

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