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.

John & Estela Williams on October 4th, 2008 at 10:33 pm #

Glad to hear that Tina is getting some much needed rest… 5 days straight would be very hard, and yes, Tina is an amazing woman! Glad to hear that Ella is doing better and that she might be off of some medication… :-). Love you guys!

Joel Snyder on October 4th, 2008 at 11:26 pm #

Ella, It was fun having lunch with you and Dad today. I am feeling like the answers to your food and fluid issues are coming into focus for your Doctors,Nurses,and the rest of us. I am praying that you keep the steady progress up and that you will be home soon. I will see you later. Love,Grand[pa!!!!!!!!!!!!!!!!

Kathy on October 5th, 2008 at 5:45 am #

That is a cute picture of Ella. Looks like she was shocked to see the camera…or she was just shocked! I pray that she is on the road to complete recovery.

Kelly the Nanny on October 5th, 2008 at 7:53 am #

It’s interesting when you say God won’t give us more than we can handle. It seems like He does, but of course it’s because the only way we can handle it is if we call on Him. All things are possible 🙂

I was talking to a friend last night, and we kept talking about just that–how God will push you as far as you can go. It’s like there’s a line where your limits are, and a lot of people think God, and through His ways, pushes you over that line. I don’t see it that way. I think there’s that line that is our limits, and he pushes us INTO that line, which stretches it and pushes it back, and then we stand there, literally stretched to our limits, but still within them, and all because of God.

Wow. That is a HUGE jump in the BUN–I was totally shocked when Tina told me that at lunch. I just hope we can get some real concrete answers REALLY soon!
See you in a while!

Joan and Steve Odell on October 5th, 2008 at 10:59 am #

Great News!! Sweet pictures!! Glad Tina is getting some much needed rest and you and Ella have some special time together as well. Prayers continue and hugs – Steve and Joan

Kathy on October 5th, 2008 at 2:02 pm #

Kelly, you are so right about that. I read the same thing on another blog about how you tell someone that God won’t give us more than we can handle, and we think we are at the end of the rope…but God just lengthens that rope…exends us a little more..and when we get “out of that valley” we are suprised that we got through it, and realize that God stretched us further than we expected we could go. And we are better for it.

I hope that makes sense.

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