Posted (jooosh) in All Posts on October-4-2008

I spent last night with the Bun and I’ll be spending tonight in the hospital as well so Tina can try and catch up on some sleep. I don’t know how Tina does this 5 days a week. What an amazing wife I have…no doubt!

Overall, Ella has made some pretty big strides since we’ve been here. A doctor who hadn’t seen her in a few weeks confirmed this for us. I think seeing her every day can sometimes skew our perspective, so having an attending doc affirm her progress is encouraging.

Ella continues to tolerate her food, and did well with it through the night, but we’ll be holding her at the 26k/cal mark until Monday. They don’t want to push her too much.

I did have to wake the Bun up at 5 this morning. The reason…they needed to get IV access. The purpose was to try and balance out her cortisol levels that may have been impacted by the steroid regiment she was previously on. Obviously Ella was not too pleased about the prospect of this. She was even less pleased because they tried 4 times over an hour period to get access (twice in the hand and once in each foot) without success. This was pretty much 60 minutes of non-stop melt down for Ella with nothing to show for it. Not a fun time.

The nurse who attempted placing the IV noted that Ella’s veins were clotting very quickly. This made me think about the night docs concern regarding Ella being too dry intravascularly. Over the last few days, it has seemed to us that Ella was still too wet because of some of her clinical behaviors and her saturations. I asked if clotting was a sign of her being too dry, and the nurse confirmed that it could be.

Although they couldn’t get an IV, they did get enough blood to run a BMP. Everything was inline accept her BUN…which was 34! In the past we relied on this number heavily to give us an idea of where Ella was from a fluid standpoint…that, and her clinical behavior. With her new medicine regiment though, we’re going to have the change the way we interpret Ella’s previous clinical signs. We thought she might be too wet, when actually she was too dry!

This did seem weird to me that last Wednesday she had a BUN of 9 and three days later, it’s 34. After talking it through with a doc, it sounds like the increased protein in her new food could be pushing it higher too. Either way, she’s still too dry, so we held off on one dose of her diuretic (aldactizide) today.

The fact that she is too dry does have a silver lining: we were able to get her to this place without the use of any loop diuretics (Lasix or Bumex)! Moving forward, we should be able to balance Ella out with the current set of meds, at least that’s how I interpret it at this time.

We’ve been trying to ween Ella’s oxygen too. She tolerated 1 liter for awhile, but I had to bump her back up to 1.5 liters in the afternoon because she was saturating in the upper 80’s / low 90’s for about 30 mins. As of this evening though, we’re back on 1 liter.

The only thing a bit off about Ella is she can desaturate pretty quickly and she can be happy one minute and then upset the next. Not sure what to make of this, but hopefully this will settle down in the coming days.

Today marks six weeks in the hospital, and I’m hoping we don’t need to stretch it another week. Trusting in our Lord for the timing of being discharged. Even though we want to be home, I don’t want to rush His work either.

I did find some perspective in the elevator today. I rode up with a mom who’s 19 year old son is battling cancer. Wow…that hit me hard. Cancer at 19. I know that God only gives us what we can handle, but He will often stretch us to the very edge of our capacity. Faith is grown during these spiritual workouts. I’m just so thankful that He’s blessed us with 14+ months with Ella.

Praising God every day for this sweet little Bun.