Posted (jooosh) in All Posts on September-28-2008

I stayed at the hospital last night so Tina could get a solid nights rest at home. Ella woke up about every 45 minutes last night. The first couple times were related to food, and I think the others times of restlessness were more caused by her elevated heart rate of 170bpm at rest.

Ella continued to have problems with her feeds…a combination of Peptamin Jr and Pedialyte. She’s been very gassy, both from her G-Tube and from a toot factor…and man, her toots will knock you over. I also sense that she’s uncomfortable even during the feed. Typically within 25-35 minutes of when her feed has completed, she has a meltdown related to discomfort. Some pain is alleviated when the gas escapes, but not completely.

At her three o’clock feed she had a MAJOR meltdown. On a scale of one to ten, she was an eleven and this went on for 20 minutes. I called the resident doc to come in and look at her so he could see just how much this food was affecting her. My gut keeps telling me that it’s the food. So at this point, I want them to change this because this has been going on for way to long (a few weeks now) and I’m tired of us torturing our kid this way.

Ella has also been pushing up a bunch of bile during these episodes while were venting her G-Tube. I had shown this to other nurses and docs in the past, but the didn’t seem too overly concerned. I always like a double check on this because we were told in the NICU at Shands that if Ella ever starts pushing up dark green fluid, there’s a good chance she has an obstruction in her intestines.

Well the doc who was on today seemed a bit more concerned. So much so that he ordered a three panel xray of her gut to check for any problems. He also wanted to check her potassium because if it gets too low, it could affect the motility in her intestines.

After talking it over with Tina, I also asked if we could switch her back to Alimentum (even just the 20 calorie version) for the next few feeds to see how she tolerates it. If she handles it well, it confirms that it’s the food. At this moment, she is sleeping comfortably, and I gave her a feed of Alumentum 45 minutes ago. She had no problem taking the feed, and she’s shown no signs of distress since. Here’s hoping this continues through the rest of the night.

I’ve not heard anything regarding her lower GI xrays, and I assume no news is good news here. Her labs came back though, and her potassium was in the middle (3), so that was good. Her BUN on the other hand was 15, which is amazing because 8 weeks ago, she would have been in pretty bad respiratory distress with this kind of number. This confirms in my mind that the Captopril is doing something.

Even before seeing her BUN we’d been telling the docs that Ella still seems a bit too wet. Her clinical behaviors and increased upper airway congestion indicate to us that this is the case. The docs here feel that, moving forward, she’d be better off being a little more over dirareased, which is something we’ve known as long as we’ve known Ella ;-). With that thought they administered a single dose of Bumex (1.5mg) and took a chest xray to confirm the fluid levels in her lungs. They also increased her Aldacdizde, the thiazide diuretic (non-loop), which will hopefully allow her to level off into a balanced fluid state.

Besides all that…I’m exhausted.

5 weeks and one day in the hospital and I be lying to you if I said it didn’t suck in a lot of ways. If you have a kid, think about the time when your kid was real sick, and you were up with them all night ’cause they were puking. Then, your kid starts puking so hard that they can’t catch their breath, then they turn blue and almost pass out. Maybe you had to do that for 3 or 4 days. Now…try that scenario for 5+ weeks and on top of that, live out of a hospital, watch your kid get needles stuck into their feet, head, hands, multiple times AND have a different set of doctors with different opinions who need to really “practice” their medicine because your kid is not very straightforward and seems to not respond to any “typical” treatments.

And for Tina…multiply what I said above by at least 10 because she deals with it most of the time!

I share the snippet of reality above so that I can share this…

As much as this sucks…God’s blessing has been 100 times greater!

To have this amazing child in our lives and to see so many lives touched by her,
to see the Lord’s hand at work in so many ways,
to share Ella’s story and have people recognize and see the power of God at work,
to have people on their knees, lifting us and our sweet child up in prayer,
to draw more closely into an intimate relationship with Jesus…


every needle,
every retch,
every sleepless hour,
every procedure,
every surgery,
every moment of anxiety,
every shortness of breath,
every tear shed…

…worth it.

God is so Awesome…We Praise Him for endless supply of mercy, love, and grace.

Oh…and speaking of how awesome God is…

Ella’s Nanny (Kelly) is now up here in Denver, helping us with the move and learning about Ella’s care. Kelly’s comments on our blog are just a small taste of what an amazing woman of God she is. We spent a couple hours in the car yesterday, driving up from Colorado Springs. Every moment we’re with her just continues to affirm how much she’s supposed to be in our lives. Thank you Lord for blessing our family with this sweet, obedient, servant of yours!

And Lord…thank you for blessing us with Ella Renae.