Posted (Tina) in All Posts on March-18-2009

Well, Ella was up 8 times last night.

I did try giving the Captopril late at night before I went to bed, but while Ella was asleep. And although she woke up just as much throughout the night, I must admit that each time she woke up, she was coughing. So, I think that Captopril definitely causes the chronic cough. We’re going to try a different method tonight with the Captopril and are going to see what happens.

In between her whining today, she did well with occupational therapy and physical therapy which made me happy. Her cold does seem like it is mostly gone (nose is clearing up, just some fussy behavior), so she seems to be tolerating the exercises a bit more.

Her retching is still the same – – a lot. She retches multiple times per day. Unfortunately, the SVC procedure which opened up her heart, did not have any impact on the retching. We did not expect for there to be any improvement. Once we got the last upper GI at the beginning on February, we got our answer. Her nissen is still tight and intact. It takes longer for her esophagus to empty into her belly and the liquids and secretions “pool” in her esophagus. When it sits in her esophagus, your body’s normal reaction is to get it to move! This is likely the major trigger of the gagging. There isn’t anything they can do at this point to alleviate this symptom. If she was older, I think we could help her understand how her body is designed differently and some tactics to help her swallow and not retch (ex: try drinking small sips versus a larger volume). But until she is at an age of understanding, I think the retching is going to continue.

She weighed 9.56 kilos this morning. Since she seems to have plateaued, we decided to go ahead and give her more fluid. We increased her daily amount by 50 ccs today; she seems to have tolerated it fine. If all goes well, we will likely increase more in the upcoming days. We want the Bun to gain more and more weight! She is still not in the “normal” growth curve, so we would like her to get closer! This will simply help her lungs grow which helps her in every way possible.

And once again, I’m still surprised at how much having the SVC open has made a difference in her fluid issues. Her heart rate last night was between 90-100, which is the lowest that I have seen, almost ever. I think the last time she did that was over a year ago, when she was in the NICU and they gave her Sildenafil for the first time. And it was only for a few nights before her fluid issues started up again. So, it is a very good sign that we have increased fluid and her numbers have continued to get better. Although I have seen a low heart rate before every once in a blue moon, I have not seen it while increasing her fluid. That is a victory from above that we will claim!

He is Always There

We can’t foresee the turning of the tide
When problems beset us and tears are cried.
Sometimes life deals from the bottom of the deck
Filling us with worry and leaving us a wreck.

The enemy seeks to devour and destroy,
Using deceptions to eliminate our joy.
While walking through the valley, our heads hung low,
The mountain top seems so high, our footsteps slow.

How many times have we traveled this road
To battle the frustrations of troubles bestowed?
Yet when we come to our darkest hour
God demonstrates His infinite power.

It doesn’t matter how bad things might seem,
He always comes through, our faith to redeem.
God will not fail us in our times of pain.
He’ll never forsake us, by our side He’ll remain.

So when we find ourselves at a total loss
Or when the valley seems too wide to cross,
Just remember you’re in His love and care,
Look over your shoulder, He’s always there.