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!
Let me back up and explained what has progressed over the past few days to get us here. First of all, I’m going to stop writing about “how well Annabelle is doing” in my blog posts because it seems like we’re back in the hospital the next day! As mentioned on Monday, she finished her last dose of antibiotic from her sinus infection the previous week. She appeared to be on the mend and doing great! However, Tuesday she pretty much stopped eating by mouth and looking back this should have been the first indicator that something was wrong. Her ketones remained negative and she was still acting fine and the same was true Wednesday morning. Then all of a sudden on Wednesday afternoon she threw up the two medications we give her right before her 2pm feed. Since this hardly ever happens I decided to retest her ketones even though they were negative that morning and this time they had jumped to small-moderate which is VERY alarming. I started pumping pedialyte right away and called the pediatrician who really recommended I take her to the ER.
So I got to the Brenner’s ER around 5:30 and it was slammed. We spent 6.5 VERY LONG hours there just waiting around to get admitted. Her first ammonia was 139 so Duke decided to go ahead and admit her until her ammonia level dropped. The protocol is to always get her started on a D-10 IV, take a BUNCH of different labs, and take away ALL protein completely until she stabilizes. Not only was it crowded but all of the doctors and nurses handling our case had never seen Annabelle before (I didn’t think this was possible as I thought we had seen almost all of the ER nurses and doctor teams at least once). It’s always difficult when you have to re-explain Annabelle’s condition to a new team since most have either never heard of Propionic Acidemia or have only read a small snippet about it in a medical book. I did go a little “Mama Bear” on one of the ER nurses who wasn’t putting Annabelle’s ammonia blood sample on ice quick enough for my liking (It’s a finiky test that has a lot of factors that can give inaccurate readings). Annabelle was screaming and crying, I was screaming and crying, and I was all by myself during the “pricking” because Mike hadn’t finished teaching driver’s ed yet that afternoon. It was a little stressful getting that iv in her and getting all those blood tests. But luckily all of her other ammonia blood draws have been able to have been gathered from her IV so they haven’t had to prick her anymore since the ER.
Yesterday morning Annabelle’s ammonia was 102 and then dropped to 88 by the afternoon. We also introduced some protein back into her diet using one of her sick day formulas. So far she has kept everything down and tolerated her feeds well. She’s also getting some of her playfulness and smiles back, although the lack of protein and sleep have definitely left her fatigued. The doctors are thinking that Annabelle has some sort of GI bug because she did have some large runny poops and her stomach seemed to be bloated when we arrived. Plus, nothing in her bloodwork indicated any type of infection. Unfortunately, there is nothing we can do for a virus except let it run its course….and for Annabelle that means a trip to the hospital and some IV fluids to keep her stable. The hospital staff and doctors on the pediatric floor of Brenner’s have been amazing as always and they have come to know and love Miss Annabelle. But nothing beats sleeping in your own bed so hopefully we’ll be there tonight!
Some prayer requests to consider:
- Annabelle would continue to tolerate her feeds well so discharge can happen this afternoon.
- Whatever is causing this setback (GI bug or other) would quickly resolve itself so Annabelle can get well enough to get her transplant.
- Continued prayers for peace during this season of waiting for “the call.”
- We are going to be trying to give 0.5g of Annabelle’s required protein for the day through solids. We feel comfortable with her formula regimen right now and introducing measurable solids seems a little overwhelming. Our dietician gave us an 8-page printout of all the brand name baby foods and how much we measure or weigh of those foods to equal 0.5g of protein. Prayers for guidance in this new adventure are appreciated!