Posted (Tina) in All Posts on September-10-2008

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You wouldn’t know it from the picture above, but poor Ella…she had another rough day.

We had a horrific blood draw this morning. It was not someone that was especially noted for giving “good sticks” and it lasted way too long, 15 minutes. That may not sound like a long time, but when Ella is fighting hard, clamping down and holding her breath while turning blue, 15 minutes feels like an eternity. We get blood draws every day, so I’ve seen those that really do a good job and those that might do well on 90% of other kids, but seriously, this is Ella. She’s tough.

Feeding did not go well. The morning feed was scheduled to take 1.5 hours, but took nearly 3 hours. She has increased discomfort along with retching. We skipped the 12 noon feed and then came up with a different strategy. We’ve talked to Dr. Perry about switching her formula to a more age-appropriate formula called Peptimen Jr. Our original plan was to slowly integrate over from the Alimentum very slowly over several weeks. Well, since Peptimen Jr. is more dense and has more calories, why not make the switch now? We are in a controlled environment and she is going to have a problem working up to full feeds either way, so why not make the food switch and maybe be able to decrease the volume of food?

We tried one feed of 60ccs over 1.5 hours and it seemed to go okay. She was not any better than the Alimentum, but also not worse. So starting tonight at 8pm, they are trying to make up some of the calories lost today and have her on a continuous feed of 40ccs for 10 hours. So far, so good. The real test will be tonight while we attempt to sleep.

If we have learned anything from Ella, she wants us to remember to go slow with change. We went through this process in Gainesville too with feeding issues. The good part: it can resolve. It just takes time. Taking a deep breath…

They increased the dosage of the Captopril today; they are still playing around with the dosages for the optimal effect. Along with the Captopril, the docs mentioned that they anticipate lowering her dosages of diuretics over the next few days. We’re excited about that…

Respiratory-wise, Ella looked fantastic. Aside from her tummy issues, which seemed to come in waves on/off, she seemed happy and was looking good. She has been stable on 1 liter for 24+ hours now.

After applying pure aloe vera gel to her face several times per day over the last few days, her nose is no longer scabbed. Yeah! For the most part, she is back to her smiley self, unless its feeding time!

Please pray that Ella will tolerate the Peptamin Jr. tonight and that she would continue to tolerate more and more feeds as the days and hours continue. Also, that her lungs and heart will work in better harmony, effectively reducing the need for diuretics and oxygen.

Deuteronomy 10:21
He alone is your God, the only one who is worthy of your praise, the one who has done these mighty miracles that you have seen with your own eyes.

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