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. 

Saturday we did have a little bit of a scare when we noticed Annabelle's JP drain leaking and sticking out more.  After speaking with our transplant coordinator we had to go to the ER to have it removed.  Luckily, when the attending ER doctor took off the tape to look at the drain it came right out.  So all they had to do was clean it up, put some gauze on it, and send us home.  It was our shortest ER trip ever!  Luckily, they are not going to put in another drain as of now, but Annabelle may have to have an ultrasound later on if they feel like fluid is building up in her abdomen. 

Medically, Annabelle is doing great!  Her liver numbers are now in the normal range and continue to look good. There was even dicussion today in clinic to lower her predisone steriod soon but we're not sure when that will happen.   Most of her management right now is making sure she's at the right Prograf level (anti-rejection drug) and in turn manage her magnesium and potassium (higher levels of Prograf makes magnesium too low and potassium too high).   Her vomitting has also gotten better and she usually only throws up about once a day now. 

Annabelle is also getting back to her baseline before surgery. Yesterday she went from sitting to her tummy for the first time since transplant and today she rolled to her stomach for the first time.  Tonight we're going to try to let her sleep on her tummy to see how she does since she always liked sleeping on her stomach prior to transplant.  It's been taking her longer to get to sleep lately (could be the 9pm dose of predisone we have to give her which gives her a 2nd wind!).  However, thanks to her new liver she has much more energy and can sit in her playpen for a good two hours playing with her many toys.  She started outpatient physical therapy on Wednesday and we'll be having that weekly while we're here in Pittsburgh.  They will be teaching us things to do with her to help her core strength and also develop weight bearing through her feet and legs.

Overall, Annabelle is still relatively happy considering all she's gone through and considering she's teething (now they decide to come in!).  The hardest part of the journey right now is the fact that she has to have blood draws twice a week (in time this will only be needed monthly).  She is learning what the "Frog Suite" is and she's doesn't really care too much for it.  Today, she actually had to have two blood draws (one in the morning and one midday due to different med levels that are time sensitive).  The second blood draw took two attempts and by the end of it she was so worked up that she threw up all over herself and Mike. It was a little rough. :(  However, I will say that she's getting more use to the Lovenox injections and barely cries for those anymore! :)

Since Annabelle's JP drain is gone the transplant team also gave the go-ahead to let genetics change Annabelle back to her regular formula.  This is great because the mixture they had her on was so gross and stunk really bad (especially when she threw up and don't even get me started on the smell of her poop!). We're very happy to be back on "regular" nutrition.  Annabelle has to have a swallow study test done before the transplant team will give the green light on solid foods.  Hopefully that test will be scheduled next week so we can decrease her formula which in turn decreases the amount of time she's hooked to her feeding pump during the day (it's getting very difficult to keep her curious hands away from that tube!).

This weekend we are hoping to get out a little bit and maybe go shopping for Annabelle's 1st Birthday Party (I can't believe she'll be 1 in 13 days!).  Thank you everyone for the cards and care packages we're getting!  They really brighten our day and I can't wait each day for the mail to come! :)  Mike and I joke that we feel like we're back in college again (we live in a small dorm-like setting, get care packages, have to go to the dining room for meals, have to go upstairs to do our laundry, etc).

We miss you all and we appreciate you walking alongside us in this journey!

Prayer Requests:

1.) Continued prayer for the donor's family.

2.) Continued prayer for no infections, no clotting, and no future episodes of rejection.

3.) Continued prayer that Annabelle's liver numbers would remain stable and that her body would accept this liver as her own.

4.) Continued prayer that Annabelle's tummy would adjust to all of her different medications and that her vomitting would cease.

5.) Pray for Annabelle's swallow study to go well so she can go back to eating solid foods again.  Pray that she would have an increased appetite as she hasn't eaten by mouth in a month.

6.) Pray for Annabelle to continue to gain strength and make huge strides in her physical development.


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