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.

Well they started Annabelle’s feeds last night at 10ml/hour but after an hour and a half she threw it up….so they had to stop feeds again and rely solely on IV nutrition.  Then her lactate rose even higher to 9.9 (normal is below 2.0).  So our PICU doctor decides to start running tests on Annabelle just to rule out all possibilities like heart issues, clots, or infections that could be causing the rising lactate levels.  So, overnight they preceded to do an EKG, an Echo, and a CT Scan….all to Miss Annabelle’s disapproval.  She was very fussy yesterday and was getting to the point that she woke up crying and cried when anyone touched her (it just breaks my heart).  Needless to say, she got very little sleep last night and was exhausted due to all the testing.

Luckily, all the results came back good as there were no clots and no heart issues that they could determine.  However, she was so upset and skirmy during the Echo that the doctor wanted a repeat of that today. 

She was finally able to get some sleep from 4am – 8am and we even got a few smiles out of her later this morning!   However, her lactate this morning rose to 11 something…Yikes!  The team decided the best thing to do was insert a NJ tube, which is a tube that goes through the nose and down through the stomach and into the small intestine.  Since everything was checking out well, the high lactate keeps pointing to her metabolic disorder.  The only way to bring the lactate down would be to provide metabolic stabilty and the only way to do that is to get her nutrition balanced.  The geneticist agreed that we had to get nutrition in her gut and not just through an IV.  This NJ tube would get the food to her intestine and prevent her from throwing it up.  They assured us it was a 20 minute simple procedure. 

We took Annabelle down to radiology around 1pm but by 2:30pm we were still waiting in the surgical waiting area.  We finally asked about our daughter and one of the radiologists came out to say that the tube wasn’t getting into the small intestine and kept popping out (it’s very “rare” they said but we all know Annabelle is the definition of rare). Finally, with the help of two doctors they were able to insert it properly and run a dye test to check it.  The doctors said that the opening from the stomach into the small intestine was very tight (this was likely the reason she kept throwing up everything).  Annabelle was only given a little bit of morphine for the procedure so I can only imagine how uncomfortable those two hours were for her.   By the time we got back to the PICU room she was exhausted.  Then the ECHO team wanted to come by to perform her extra ECHO; we told them to come back tomorrow because Annabelle was exhausted.  Well the doctor wasn’t too happy about that so we comprimised that they could come back in 45 minutes once Annabelle had a chance to rest after her awful NJ procedure.  When they came back they were able to get a good ECHO exam because poor Annabelle was too exhausted and slept through most of it.

They were able to start feeds finally around 4pm and so far she is tolerting the 10ml/hour of formula through the new NJ tube.  Her Echo also checked out well so there appears to be no heart problems.  Despite all the stress Annabelle’s had today her 4pm blooddraw did show a decreased lactate of 8.4 and decreased ammonia of 75 so hopefully we’re moving in the right direction now.  If we can get this lactate under control then we’ll be able to move to 7B recovery soon!

Prayer Requests:

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

2.) Pray for no rejection, no clotting, and no infections.

3.) Pray that Annabelle’s new NJ tube would do it’s job well and that she would hold down her feeds. Also, pray she would not rip it out so that she wouldn’t have to go through that procedure again.

4.) Pray for decreased lactate and ammonia levels.

5.) Pray for exceptional nurses!