Audra's medical mystery...Part 2

Audra slept well Wednesday night, had no vomiting and woke up Thursday morning looking a little bit perkier.  We were actually starting to see a few smiles for the first time in many days. 

Snuggling with the new fleece blanket she was given when she got her PICC line

 

We were blessed with a huge basket of goodies from my friends at work upstairs in the PICU.  They have been stopping by often to visit, checking in multiple times per day via text, dropping off snacks and meals and even doing my laundry.  I really do have the very best work friends ever!

My favorite item was absolutely the full-sized plush towel.  After 4 days of showering in the hospital with hospital grade towels...which are scratchy and more like the size of a hand towel...having a large, soft towel was Heaven!

Audra got a special delivery from Aunt Kristy on Thursday...

...and oh boy did it bring a huge smile to her sweet face!

 

Thank you to everyone for the calls, texts, emails, well wishes and prayers.

The support we have received from everyone makes it so much easier to get through these long days and nights in the hospital.

And now for the medical details:

Thursday started early with an 8:30am trip to radiology for a barium study to evaluate her stomach and intestines.  Then we had to go back every 30-60 minutes for follow up x-rays.  Which meant lots of wheelchair rides through the hospital.  It was so nice to get out of her room for a while.  She was finally done around 2:30pm. 

She continued to have high blood pressures throughout the day, especially later in the afternoon.  The running theory was that she may not have seen any of her usual nighttime clonidine dose for the past 5-6 days because of all her vomiting.  And the high blood pressure could be the result of withdrawal from the medication.  The day after she was admitted she was started on a small dose of clonidine in the morning (for her behavior issues) in addition to her nighttime dose (for her sleep disorder) so hopefully her blood pressure will normalize soon. 

Later in the day the results of her barium study were available and there was no obstruction or structural reason for her vomiting.  She did have very delayed gastric emptying which absolutely could be the reason for her vomiting.  But we kinda knew that even before the study.  So a normal study and no new vomiting meant they wanted to try again running pedialyte very slowly through her g-tube in addition to the IV nutrition.  Her weight is down 3 pounds since coming in {which puts her way-way-way below the growth chart} so every calorie helps. 

We were really looking forward to Friday...Daddy, Grandma and Grandpa were coming to visit!  They were all here by 10:00am and luckily it was a lazy day for Audra with no tests scheduled.  Grandma brought more balloons for Audra...including a butterfly that is as big as she is!  We had a nice visit, Audra was so happy to see them!  Sean and I were able to go down to the cafeteria for lunch and to catch up...which mostly meant talking about what needed to be done around the house and which kid needed to do what and go where this weekend :)

Balloons from Grandma and Aunt Kristy

 



Friday afternoon the Genetic team came back to talk.  They wanted to know if I had any questions after a couple days of processing the news of Audra's ZTTK syndrome diagnosis.  They also requested my consent to include Audra in research regarding this new syndrome.  They wanted to draw additional blood work and enroll her in a genetic database.  They said that all journal publications, articles or papers that include information about her case will be shared with me.  Audra and the few other children with this genetic disorder are essentially "writing the books" on ZTTK syndrome.  What is learned from their medical issues and developmental progress will help determine the course and prognosis for future children who receive the same diagnosis.

Later in the afternoon Audra started showing some of the behaviors that brought us here in the first place.  She has felt so miserable the past 6 days, just been laying bed or sitting on my lap, sleeping and rolling around in discomfort.  And, while we would be happy if those behaviors never came back, now is the time if they are going to.  We are in the right place to get her help. 

Saturday came and the doctors had big plans for Audra's belly.  Around lunch time we changed her continuous G-tube feeding from just pedialyte to 1/4 strength formula.  The IV nutrition was doing it's thing and her weight was creeping up a few ounces every day.  After consulting with the GI doctors we had a good back pocket plan in case the addition of formula didn't go well. 

Because it was Saturday again Audra was due for her weekly immunoglobulin infusion.  We got that done without any issues.  She was a tangled mess the whole time though, rolling around in bed with 5 tubings connected to her: 2 IV nutrition, 1 G-tube feeding, 1 IV med and the immunoglobulin infusion.  It took me on one side of her bed and the 1:1 tech on the other side to constantly keep her from pulling something out.

Now that her belly is feeling better it is taking more effort to keep her distracted and occupied in bed.  When she's happy she melts your heart with her beautiful smile and contagious giggle.  She was happy to color for a little while in the new book she got from our PICU friends:

 

  And a delivery from her home care nursing agency brought a big smile to her face.

She loves balloons...and the ribbons they are attached to !



The balloons were tied to a bunch of lollipops which she absolutely loves.

I had to quickly hide them in the closet, but at the very first word that she can put some food in her mouth again those lollipops will be the first thing she gets!

By mid-late afternoon Audra was really starting to struggle with her behavior.  Her body was in constant motion...stiffening, arching, screaming, etc.  And she was chewing on everything in sight.  I went in search of a teething toy at the hospital gift shop and CVS but had no luck.  We kept giving her empty feeding bags and IV tubing for her to play with and chew on so she would leave her real ones alone.  Both the 1:1 tech and I were constantly trying to redirect and calm her.  It was exhausting.  But eventually the sun set, and once she took her nighttime meds she was asleep in 20 minutes.  With her nighttime dose of clonidine she falls into a deep sleep, so her nurse was able to turn the lights on, draw all her blood work off her PICC line (including the extra blood for Genetics research) and hang her new bags of IV nutrition without waking her. 

And that was the end of a very long week in the hospital.  We are looking forward to a new week, with more progress in the right direction, and being steps closer to getting home.