Charity's blog

Still in the PICU :(

Hello friends!  There isn't too much to update today as Annabelle is about the same as yesterday.  Her ammonia has remained steady in the 80's and 90's but her lactate continues to climb slowly.   The team thinks the rising lactate is just a result of her metabolic disorder, and they aren't leaning towards infection since all of her cultures have come back negative so far.  Their plan for today was to introduce a little bit of formula into her system (like 10ml/hour little) to see how she tolerated it and to make sure she didn't throw up.  That would have been great except that it took the formula lab 5 hours to finally get the formal to us (it was just straight Enfamil so I don't know what the hold up was....argg).  She finally started feeds around 4:30pm and hopefully they will increase the rate tomorrow if she seems to hold all of that down.


Today has had it's ups and downs which is expected on the rollercoaster that is transplant.

Annabelle had a pretty good night's sleep which was very needed.  When we arrived her left hand looked very purple, so luckily the doctors were able to remove her arteral iv.  We know this line was causing her a lot of pain, and she seemed to be much more comfortable once it was removed.  She also got the nose canula and urine catheter out (so three tubes gone in one day!). She even got a little bit of energy and wanted to sit up earlier this morning.  She can't sit up for long but it was nice to see her in a different position other than laying in the bed. 

NG Tube Gone!

Today has been Annabelle's worst day post-surgery. She was in a lot of pain overnight leading to vomiting and pitiful cries.  This is, of course, hard on us as parents knowing that we cannot take the pain away.  The morphine is helping with the pain, but we are trying to not give her any until she really needs it so she doesn't become dependant on it.  The nurses are allowed to give her pain meds every two hours but she's actually been doing really well tolerating her pain and only needing it every 3-4 hours.  She still hasn't given us any smiles yet, not even at her pink doggie (this is so sad to see since she's such a happy girl). She does stay entertained by her aquarium mobile and a neat tv channel that plays soothing music and displays pictures of cute animals.

No Breathing Tube!

Well today's big excitement was obviously the fact that Annabelle was able to get extubated (aka pulling out her breathing tube).  After good bloodwork, a clear liver ultrasound, and a great cpap trial they were able to pull the plug on the tube.  In the process, they have also taken her off all sedation. Unforunately, this has made for a not-so-happy Annabelle due to the soarness in her throat and likely pain from the surgery.  However, she's been a trooper and hasn't cried any; she's just managed to let out a few pitiful wimpers.  The doctors have started her on a small amount of morphine every four hours to help with the pain. 

Annabelle has a NEW Liver!

Wow!  What a wirlwind these past few days have been! Let me catch everyone up to speed with what has happened:

Pittsburgh Trip #2 and EEG Results

Hello friends!  It’s only been a little less than two weeks since I’ve updated, and I already feel like so much as happened these past two weeks!  I wanted to update more often, but time just doesn’t allow it with the many doctor’s appointments we’ve had lately.

For starters, Annabelle had a 1-hour EEG last Thursday, July 27 to see if they could capture any of her brain activity during one of her eye rolling episodes. She did fantastic during the test and just set back and played with her toys while the technician stuck all the electrodes on her head.  Once the test started she just played, took a small nap, and LOVED the part of the test where they flicker strobe lights in her face (it gave me a headache but she just smiled when the lights came on).  Unfortunately, she never rolled her eyes during that whole session so we knew we likely wouldn’t have any definitive answers as to the cause of her eye rolling.

Doctors, Doctors, and MORE Doctors

Wow, I’ve been really really bad about updates lately.  To say that life has been a little crazy would be an understatement.  Since my last post we had just returned from the hospital and Annabelle had not been eating well.  We had really hit a brick wall and I was beyond discouraged with the whole situation!  Thanks to some great advice from another more experienced PA parent we have totally revamped the way Annabelle eats.  The problem is that Annabelle has to have a set amount of formula every day to help her stay within the normal range for protein; there’s no getting around that issue.  What we are doing now is a continuous feed overnight through her g-tube so she gets half of her daily formula while she sleeps.  By doing this we are able to knock out a bulk of the formula at night so that she isn’t fed as much formula during the day, allowing us more opportunities to focus on feeding solid foods.   Since her night

Settling in at Home

Wow it feels so great to be home!  We are hoping that this will be Annabelle’s last hospitalization before transplant but who knows!  We were able to get discharged from the hospital on Friday around 3:30pm, giving us plenty of time to get settled in for the night.  Usually Annabelle has no energy after a hospitalization but she was actually able to play for a little bit that evening before retiring to bed a few minutes earlier than usual.  We all slept really well Friday night in our own beds!  The hardest part of returning home is getting our hospital bags back in order: washing and repacking all the hospital toys, packing new unopened cans of her special formulas (the hospital doesn't keep those in stock so I always have to remember to bring some with us), washing and repacking all of our hospital clothes, and washing and sterilizing all the new syringes and g-tube extension sets I collect during our stay (I have 20ml baxter brand syringes now w

Praise God! 60 Ammonia!

Hello friends!  I’m so sorry for the late update; I had started typing a blog post last night then accidently lost it all and didn’t have the energy to retype it.

The great news is that Annabelle’s ammonia down to 60 this morning (standard range is below 55 so Duke was very pleased).  The plan today is to cut back her iv fluids completely and make sure she’s still tolerating her feeds well through g-tube.  If her ketones remain negative and she does not throw up then we’ll be able to go home this afternoon!

The Time is Here!

Well friends, we've hit that point in time where the stress-free waiting period is over.  Annabelle is well now and she finishes up her last dose of her antibotic tonight.  It's scary to think that "the call" could be any day now OR several months from now.  I'm so glad we got Annabelle's MMR vaccines the past two months because we knew she couldn't get a call due to the vaccine waiting period.

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