Yep, we’ve been here three weeks today.

Ella only woke up twice last night. Both times, just like the night before, she would wake up retching. One episode last night stood out: she was up between 4:30am – 6am. At 4am, she was fed and then woke up at 4:30am with abdominal cramps. She was crying and I could tell her tummy didn’t feel well. We gave some Maalox to neutralize any acids in her tummy. Then, she had diarrhea real bad at 5am. This was the 3rd loose stool in 24 hours – it was watery. Then from 5am – 6am, she pretty much retched non-stop. If I didn’t know better, it would seem like she had the flu (vomiting and diarrhea).

During rounds, we discussed several steps. For pain management, take the Methadone from IV to g-tube. The pain management team came up with a weaning schedule that we will need to follow for Ella. Can you believe that it will take 2 MONTHS to wean her from Methadone and Ativan? I am still in shock. Once again, this is all because they have a standard care of protocol to not wean from narcotics when extubating, if it has been less than 5 days. Ella was intubated for 4 days and so they just cut off all the narcotics and she hit hard. This has been the toughest part of the whole experience. One thing is for sure: we know how sensitive Ella is to narcotics and will not go through this withdrawal stuff again without putting up a fight!

For diuretics, I was able to convince the docs to discontinue the loop diuretics (IV Lasix plus Bumex). Yesterday, we had 20mg per kilo of IV Lasix once and Bumex (1mg) twice, plus the Aldactazide. Right now, Ella seems really dry (she normally won’t drink water by mouth and she is begging for it). The IV nourishment always tends to make her more wet, but with the transition to formula, she probably does not need that much diuretic. Plus, they have been giving like 3 potassium supplements each day to keep up with what the diuretic is taking from her. Stopping the loop diuretics will definitely help with keeping her electrolytes in balance. It is a huge step, but we think she is now ready to go back to her Aldactazide, like she was on before this hospital visit. The oxygen was weaned this morning too – she is back at .5 liters and seemed to do well today. Once again, an indication of being dry.

One concern this morning during rounds: her white blood cell count was elevated from the past several days. It had been around 13 and it was 21 this morning. This was alarming only because they want to make sure that the central line does not cause infection. They took one set of labs in the afternoon to check potassium (it was 3.2) and plan for another complete blood panel in the morning at 4am. Then once Ella wakes up in the morning, they are removing the central line. This means that any other labs that are necessary will require a stick.

Another change: discontinue Miralax. It has been over 24 hours and she still has watery stool. Like I mentioned in the previous post, maybe she doesn’t need Miralax? Unfortunately even though we discontinued Miralax, we still were getting lots and lots of runny stool today. I’ve lost count on how many times she has been changed throughout the day. It’s a bit concerning too since she is retching so much more. So the night nurse thought about doing a stool sample, but each time she tried the stool was so watery that the diaper absorbed it. Getting a stool sample is the only way to determine if she has a parasite or not. We’ll see if she wakes up or has diarrhea throughout the night.

We are getting the indication from the night crew that it might be our last night in the PICU. So, we are weighing options and trying to figure out if Ella is ready to be discharged. Since we are pretty involved, it just might be worth taking the risk to deal with all the rest of her stuff from the RV versus moving to a different floor in the hospital for a few more days. But then again, I’d really like a few more days to make sure that this diarrhea is not something more serious and/or from food intolerance, that she stays dry enough on her diuretics, etc. We’ve made a lot of really aggressive changes over the past few days and I’d like to feel a bit more confident that Ella will not slip backwards before leaving the hospital. We’ll see what the docs tell us in the morning along with how her labs look, if she continues to have retching and diarrhea tonight and see how she behaves clinically.

Thanks for all the support and prayers.

Psalm 46:10 (NLT)
Be still and know that I am God!