Posted (Tina) in All Posts on September-27-2008

This was the message on the dry erase board as we entered our new room upstairs. Yes, we moved out of the ICU – thank goodness! Four days of the intensive care unit was enough of a taste for me. Admittedly, it was nice to have the attentiveness of a nurse all the time. But the privacy was so lacking. We are glad to be upstairs again, although we lost our view of the mountains. Bummer!

Last night was a tough one. Ella was literally up every 30 minutes. The night seemed to last forever. Along with retching, she was having lots of gas and tummy trouble. That discomfort has lasted throughout today. While she was up all night, I had no idea that the nurse had weened her oxygen down to 500ccs. It explains why Ella may have been more fussy throughout the night and why she seemed uncomfortable. To avoid this, there are specific instructions to titrate upwards but to not wean the oxygen.

Today, she has been stable on 1 liter. Later in the day, I noted that she was breathing faster at around 75 breaths per minute and her saturations had lowered to the high 80s and low 90s. I asked the PICU docs to take a look and listen to her; it seemed like she might be a bit wet. They ordered a chest xray and afterward, opted to give her a dose of Bumex. As time passed and so did her urine, she seemed to be oxygenating better.

I feel like they keep having to chase her symptoms with more Bumex. I know this is a fine tuning process, but I think it is pretty clear that her current dose of diuretic is not sufficient to keep her in a good place.

The pulmonology team mentioned getting a consult with endocrinology on Monday. Another thought for her elevated heart rate might be an imbalance with the thyroid and/or adrenal gland. It would mean more tests, but it can certainly eliminate doubt and guessing.

Another thought that keeps coming to mind is the food she just switched to: Peptamen Jr. I think it is causing her a lot of tummy trouble, especially now that we tried to change the density of the food over the last few days. Also, I just found out that the MCT/LCT ratio of Peptamen Jr. is (medium-chain triglyceride/long chain triglyceride) is 60:40. In the past, Ella required foods that are close to 100% MCT. The medium-chain triglyeride foods help with fat absorption. Her inability to process fats in her foods does contribute to her overall fluid issue (if you remember, she could not tolerate breast milk due to the fats either).

Ella’s dose of sildenafil went back up tonight to 7mg, three times per day. Tomorrow morning, the plan is to increase it to 8mg, three times per day. It will be interesting to see what the coming days bring as far as the best meds and food to treat Ella long term. We are hoping that we can arrange a Care Conference early next week so we can discuss all the viable options.

Josh is going to watch Ella at the hospital tonight so I can go home and get some real shut eye. I’m very excited at the idea of sleeping. And just glancing at Ella’s picture below makes me want to yawn.