Posted (Tina) in All Posts on March-10-2009

Ella had a pretty good day.

PT went well today. And Ella’s OT therapist has missed the past 2 sessions since she has been feeling ill. But Kelly continues to challenge Ella and present food to her each day. Her second feeding session with Kelly and sweet potatoes went better than it has in weeks. That was promising. Feeding is always a challenge with Ella, so “good” sessions without major meltdowns are nice to have here and there.

So, we were trying to think about the sleepless nights and the effect that Captopril might be having on her sleep. Ideally, this medicine is administered three times per day. For convenience, we give this medicine at 9am, 3pm and 9pm, when we feed Ella. She does not do well with medicines on an empty tummy.

Since coughing and insomnia are two side effects of Captopril, it can’t be good to give her this medicine at 9pm right before bedtime. So although we cannot discontinue this medicine or talk to the doctor about a substitute until the end of the month, we brainstormed on ways that we might lessen the effect of the medicine. One way that might make a slight difference is the time of day that we administer the medicine.

I think it will be several nights to see if there is any correlation. But yesterday, she had Captopril at 3pm. Then, we skipped the 9pm dose (A couple of weeks ago when she had her SVC procedure, she skipped a dosage of meds and the doctors did not seem that concerned). We put her to bed and she finally fell asleep at 9:45pm.

The first time she woke up was 2am, then 5am. Neither of these involved coughing which is a typical culprit for waking her at night. Instead, she was consoled quickly and rolled over and went back to sleep. At this point, she was having a great night – -only 2 times by 5am. I was very appreciative!

At 6am, I woke up to administer the Captopril. Her food pump still had about an hour to run, so I figured this would be the best time. About 20 minutes later, she intermittently started making whining noises. She wasn’t awake and didn’t need me to run into her room, but I could hear her making these noises (like she was dreaming or not sleeping as restful). I wanted to go in and check on her to make sure. It seems that she was still asleep but her heart rate went from about 110 to 135 in about 20 minutes. Captopril always makes her heart race. When she has it with other meds and she is awake, her heart rate often reaches 190-200. So, this definitely looked better, but you could tell that she was not sleeping quite as good. I wondered if her heart going faster was making the difference.

At 7am, her food pump was beeping so I woke up to turn it off. She still was sleeping. Then, between 7:15 and 7:45am, she woke twice coughing and wanting something to drink. Both times, she seemed more awake than the prior times she woke during the night. I’m pretty sure this is because coughing woke her.

Although I was still up several times during the night, Ella was up only 4 times. And 2 of those times were later in the morning. So, it was a much improved night for her, but we are not sure how much that has to with the lack of Captopril.

Right now, it is a nice fantasy that Captopril would be playing that much of a role in her sleepless nights. And I say that because at least it would be something that we could define and possibly eliminate over the coming weeks.

For now, we are going to continue experimenting and recording our findings to see if they point to Captopril until her pulmonology appointment on Tues, March 24th.

Eli Brown on March 10th, 2009 at 7:35 pm #

I hope that Captopril is the culprit and that you can have a restful night of sleep soon. Ella is looking so healthy in her pictures, you guys are doing a wonderful job.

Lisa Richmond on March 10th, 2009 at 7:56 pm #

March 24th can’t get here soon enough I bet! I will be coming to Denver about once per month for the next six months or so with work, so I would love to set up a time to see you guys and meet your princess…and your neighbor princess too! I will let you know the times I come, and if it is convenient…fabulous..if not then…I’ll be back about every 3-4 weeks, so we can try to meet sometime!
You two are inspirational! Keep up the good work!

Williamsburg on March 10th, 2009 at 7:58 pm #

I wish I had words of wisdom about the med-sleep connection, but I know that with everything God has given Ella to handle, she has one of the best sets of parents possible to handle it with. (The headband-sweet potato combo happens to work particularly well imo, though).
Praying for continued good results from your experiments. XOXOXO

Joel Snyder on March 11th, 2009 at 10:22 am #

Ella, I am happy to hear that you are trying to progress with your feedings. Thank you Kelly for being such a good caregiver for the”Bun” and making it easier to make some progress in a difficult area. Tina and Josh I am praying for your rest and the answers on the 24th. Love,Grandpa!!!!!!!!!!!

Julie Kirk on March 11th, 2009 at 2:37 pm #

lots of hugs and hugs and hugs and kisses to Ella and Kelly

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