Wednesday, July 24, 2013

Good news all around

The last two days have brought on pretty good news...
Christian was discharged yesterday....a mere 5 days after getting half of his liver chopped off!  He really is a super hero.  And as great as it is to get himon the road to recovery, he is farther away now and although we did not get to see him an awful lot at TGH, somehow knowing that he was just across the street was comforting to us all.  We are just not complete with him so far.  

Alexa has been up more and more during the day and less and less at night...YES!!!! Oh how I have missed you sleep!  She has been having good and bad moments with the pain.  We have been working on walking and sitting up for longer periods of time.  
We are also working on introducing food so that the TPN (IV nutrition) can be weaned down.  Our diet plan is simple--so simple itis restrictions, let her have what she wants.....For someone who has had to control every morsel fo food that entered her body, this is tough for me...big gulps....we can do this.
Her appetite has not been great...yesterday for lunch she ate a bit--yogurt (which had way more protein than she would ever been allowed before) and raspberries and 1/4 slice of toast with peanut butter.  Funny story for dinner(I can laugh about it now). We thought we would be creative and she was all for it!  She asked for penne pasta with alfredo sauce (and parmesian cheese to boot!)  and some milk for the first time.  I got a great picture:
And was all excited to share it with the FaceBook world.....and then I saw that know which one...the one that tells me, get a bucket quick!  Yep!  She threw it ALL up!  

My mind went straight to "oh my god, is it the ammonia?"  You can just imagine what was going through my mind. Trying to retrain a brain after 5 years is hard stuff!  And so the doctors came to give me a pep talk this morning...They told me that they realize I am scared but that her ammonia is fine. So fine they do not even bother reporting a number to me anymore!  Her citrullin is amazing (285 at last report--down from 3400 on Thursday!). We have to offer her lots of variety throughout the day.  In all likelihood, her stomach was just a bit too sensitive with the combination of medication and food, and with it being the first big meal, it was probably just too much for her.  They have asked me not to restrict her meals at all--Get this!  She now NEEDS protein to help her liver and incisions recover! Her protein is way too low and we need it to get up so that we can wean her off the TPN.  And all that from the metabolic doctor!  I am to throw out everything I ever knew.  So I am letting go, well trying to, okay, okay!-At least I have made an attempt!  This morning, for breakfast she ate a hashbrown (of course--and well within my comfort zone) but with scrambled eggs including the white! And that was definitely a first!  And it stayed down!  Whoo hooo! 
Lunch brought on more firsts as she ate a chicken nugget and a couple of french fries.  We are working on smaller but more frequent meals, so as to not upset her stomach.  And as an FYI, she did not really care for the nugget, but then again her appetite is still not very good, she didn't care for the french fries much either.  

Alexa was not super happy this morning, but then she got a super special visitor.  One of her teachers came all the way downtown to visit with Alexa.  As soon as she saw Ms. D, a smile came out and she spoke her actual first words of the day!  They had a lovely visit, reading and playing together.  It completley turned Alexa's mood around. Thank you so much for the visit!

And I have started my sessions with the pharmacist to get training on her medication routine for when we are at home.  A whole new world of medicines here. The pharmacist might have even mentioned discharge in a week, but I have been through enough admissions to know not to get too excited about that. Things can change in an instant, and even the tiniest of things can delay discharge, so I am definitely not counting my eggs so to speak.  I planned for one month, anything earlier would be considered a blessing!

Her doctors, all of them, metabolic and liver, are very happy with her progress!  I started this post at 10am and it is now 3:30pm.  I continue getting updates and so the latest is that Alexa's TPN is going to weaned back to just running from 8pm to 8am.  During the day it is all oral intake.  Her labs look great, and they are just figuring out the sensitive balance of the medications.  All IV's with the exception of the central line have been removed, and we are looking at getting the PICC line inserted at the first available opportunity.  And even the central line is being weaned back so that during the day, when she is not getting any medicine infusions, she will be line free and then hooked up again at 8pm.  

And I'd say that is pretty good news for one day!


  1. thats so great to hear. My best wishes for you

  2. After transplant, the first time we experienced vomiting, I was totally freaked out too! I didn't know what to do, do we go in, does it mean there's a problem? I had to seriously retrain myself to not overreact. I would also wake up a night constantly to check if he was okay, and do the whole feel around the crib for spit up indicating high ammonia. It is a big adjustment, but a good one! :) Glad to hear/see Alexa is doing well and you are getting rest!

  3. What a story! We will all pray for her to continue to get better and better....and for Mom to be able to relax...hard, huh? Take care and let us know how everything goes!

  4. I second what Sairah said - it takes a lot of getting used to. And L was not big on meat for a long time after transplant so we just tried to increase her protein through things she was interested in - yogurt, cheese, hummus, beans and whole grains. If you think about it, the flavor and texture of meat is SO different from what she has been allowed to eat for 5 years. She needs some time to adjust to it as well!