Everyone who’s ever gotten a good nights sleep in a hospital raise your hand…anyone…anyone…yeah, didn’t think so.

So let’s be totally exhausted and then NOT get a good nights rest. Unfortunately for us, this is playing with a bit of fire, because if our immune systems get compromised and we get sick, we risk getting Ella sick which could be very bad.

We have been really spoiled after seeing her look the way she did last week. If we think about it, her current stats may have looked OK a few weeks ago, but now that we’ve seen Ella look as good as she has, we know better.

At this moment, Ella is stable but she isn’t even close to looking as good as she did when she was discharged. She is very fussy, and inconsolable. This is hard to see and our emotions are so raw that they’re hard to control. There is nothing familiar about this place and tears seem to flow pretty easy for both of us.* We can’t even really take time to recharge because we cannot trust to leave Ella alone in this part of the hospital. In the NICU she had 24/7 care in a secure area, and from a core team of nurses that knew (and loved) her.

A theme that has been a challenge while being at the hospital is the breakdown of communication between parties. It felt like we were finally getting the hang of things in the NICU, but now we’re having to start all over again with a new team. What blows my mind is communication between the NICU and the pediatric area is non-existent. We are still under the care of Dr. Kays mind you, but now there’s a different way of doing things.

We had spoke to Dr. Kays briefly yesterday at about 1:30pm, but our conversation was interrupted by a phone call he had to take and we didn’t hear back from him. As of 10am this morning, nothing had been changed to improve Ella’s condition. This was pretty frustrating and we didn’t know what the game plan was.

We expressed this frustration to the ARNP (Advanced Registered Nurse Practitioner) and she really did well to listen. She communicated this to Kays, and he came by in the afternoon to talk to us. Of course, when he came by, Ella was sleeping and behaving herself, so he didn’t see how she had looked clinically when she was having an episode.

After expressing our concerns to him, he made the call to take advantage of that painful IV that Ella received yesterday and give her some Lasix. We were good with this, because in the past it had always helped pull our girl out of these spirals. Well, the bummer news is that we did not see Ella respond to the Laisx like she has in the past, and she still looks a little puffy.

Also, Dr. Kays ordered an increase in her Bumex to 1mg twice a day. He’s taking this direction because her blood work looked ok except for her BUN. Kays usually likes to see this number around 24, but Ella was coming in around 12. A lower number indicates more fluid in the body, so giving her more diuretics makes sense.

So far though, Ella continued to have multiple respiratory distress episodes this evening, all of them requiring blow by oxygen just to get her to calm down.

The bottom line: We wish we could be admitted back to the NICU 3 where the doctors there really know our girl, but hospital policy prevents this. This really stinks, and I would understand it if Ella’s mystery problem had been resolved and we were coming back 2 months later because she was sick with something else.

Ella also had an echo cardiogram today and it didn’t show any signs of shunting or pulmonary hypertension. This is good, but it was taken during the one time she was asleep today and not under major duress.

At this point we just hope Ella sleeps well tonight so we can try and do the same. She was given some Tylenol and something for possible gas pains so at this moment she is passed out.

Tina and I are both totally exhausted and we’re fading right now…please continue to pray for the three of us and for Ella to make forward progress.

* In the middle of writing this post (it was written over a span of 5 hours this evening), a person from housekeeping came in to clean the bed space next to us. She asked us how long we’ve been here, and we shared some of our story with her. She started to get a bit emotional, and I felt prompted to go give her a hug. I then expressed how awesome and faithful our Lord has been, seeing us through this entire time. We talked back and forth for awhile (ok…maybe I did most of the talking), and we ended up praying together. God used this time to bless us and send His peace. Our Heavenly Father new exactly what we needed, and Tina and I were so encouraged by this. This affirms a saying that the Lord has put on my heart over the last couple days: There are no accidents, only God ordained moments.

Thank you Jesus for ordaining this moment.