The doctors don’t have an explanation…but Ella started acting like herself last night at 7:30pm. She was in a great mood for a few hours, went to sleep. She woke up at 4am when the nurse changed her diaper. After 15-20 minutes, she cried herself back to sleep. She has been in an amazing mood all day, kicking her legs and smiling. Heck, she’s even been sitting up in the hospital crib, getting tangled in all her wires!
They gave more Bumex last night and she weighed in at 14 kilos, so she is still losing fluid. Her chest xray looked improved this morning. They continue to give Lasix every 6 hours and supplement with Bumex when she is positive on her fluids. Tonight, she is due for Lasix at 8pm and Bumex at 10:30pm, based on her ins/outs. She sits at 2 liters of oxygen and on 20 parts per million of nitric oxide via the nose cannulas. They are realizing how touchy her pulmonary status can be and don’t want to wean or make any changes until they have resolved some of her other issues and know that her Sildenafil is being absorbed via her tummy.
The only time she has gotten annoyed today is when she wants to drink water. You can hardly blame her – she’s so thristy from being so dried out with the diuretics.
There are so many things to make forward progress with on this child, so it is a matter of choosing one area to focus on, going slow and getting some victories. For today, they decided to try food. This time they wanted to go even slower, 5ml per hour of Nutren Jr with Fiber. Ella still had a challenge with it initially today because she gets too much air trapped in her belly when using a continous drip of food and she is still not passing gas like she does normally. So when that air gets trapped, it causes her gas pains. Instead, we talked them into letting us drip it over 30 minutes on the pump then venting for 30 minutes. Each time we vent, we usually get gas out. It has worked fine throughout today and she has been tolerating the food fine. She has been watching her videos and having a great day. We’ll see what happens over the next 24 hours. There is still concern that it could be a cumulative effect and that by the time more food gets in her, she may have slow motility or slow gastric emptying. Either way, time will tell.
Tomorrow, there is discussion of weaning her off of the withdrawal meds: Methadone and Ativan. They want to go very slowly over about a 2-3 week timeframe. They will continue to give one or the other every 3 hours, but slowly wean the dose of med.
They discontinued Benadryl yesterday and we have not given any Atarax today. She has not shown one sign of being itchy. Wow.
We have not given any Morphine because she has not shown any signs of being agitated. Wow.
She is happy and smiling. You would never even know that she was checked out the past two weeks. Wow.
We realize that there still may be bumps in the road in the coming days, but this was a true testament to prayer. Again, the doctors have no explanation for the sudden turn. We thank all of you for the prayer support and are so thankful to see our daughter smiling and feeling good today. Whether the days ahead are darker, it was a clear indication to us that He is in the midst of the chaos.
1 John 5:14-15 (NIV)
This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us—whatever we ask—we know that we have what we asked of him.
