Ella has been having a rough time.
She is extremely uncomfortable. She's hardly been able to sleep. When she does finally drift off, it's because she's worn herself out by crying so hard. Then she'll quickly jerk awake from the pain.
And the cycle continues.
Ella still has a nerve-block being continuously administered through a lumbar epidural. She is on a strong narcotic pain killer in her IV. She's on Tylenol. We added a nerve pain medication. We added Valium.
Nothing is helping to ease her pain.
We increased most of her pain meds. Still not much improvement.
Ella's heart rate has been very high compared to her "normal." And it has been constant. It has been ranging from 145 to 165 (even while asleep), sometimes spiking to 175. Her normal heart rate is under 115 and between 80 and 90 when asleep. Her team explained that the cause for such high numbers is pain.
Ella's IV is causing her quite a bit of discomfort as well. It has been checked multiple times by the IV specialists and it is still in the correct position and is fully functional. The problem is that it is a very large IV (the team refers to it as "the hose") to accommodate all of her meds as well as her TPN (IV nutrition). The pain meds are also very strong, so they are causing irritation to her vein. Her arm has become quite swollen.
Ella is still not tolerating her feeds. We've attempted giving her a very bland, basic version of her typical formula at a very slow rate, but she vomits almost everything that enters her stomach. She's on an anti-nausea medication, but it's not helping. So for now, we have stopped attempting to feed her through her g-tube and she is continuing to receive her nutrition through her IV. We will be increasing the volume tonight.
The original plan was for me to go home this afternoon and take over caring for Ava and Henry and return to work while Michael stayed with Ella 24/7 until discharge. But with Ella's current struggles, I know that I need to be here with Michael, helping Ella get through this. So thanks to the very understanding administration and staff at the Ann Reid Early Childhood Center, as well as the incredibly supportive family members and friends to help with Ava and Henry, I will be taking tomorrow and Friday off to be at the hospital where I'm needed most (however, I will still return home each night).
This afternoon, Ella was moved up to the pulmonary floor...her breathing is stable, which was the risk that had her in the PICU for closer monitoring to start. We are glad to now be on a much quieter floor :) Ella had a visitor today in her new room and it definitely put a (much needed) smile on her face! She is looking forward to several more to come in the next few days! Unfortunately, during cold and flu season, no one under the age of 16 is allowed to visit patients in the hospital, including siblings. Ella misses Ava and Henry terribly, but luckily we have cell phones and Face Time :) But it will no doubt be a wonderful reunion when Ella comes home :)
Please continue to keep Ella in your prayers...we are very hopeful that she will turn a corner this weekend with her pain and that hopefully she'll start tolerating her feeds! At that point, we'll be able to discuss the time for her to come home :)
