Posted (Tina) in All Posts on March-4-2009

Ella was up several times last night, mostly between midnight and 4:30am, for a total of about 10 times by 8am. We’re not sure if it is teething pain. Out of nowhere, she will just start crying and crying hard. This causes her to desaturate and for her pulse oximeter alarm to begin beeping. After some holding and consoling, she calms down. Other times, she starts whining and breathing hard. I usually run into her room before the alarm begins beeping, and sometimes she is thirsty and wants a drink, yet other times refuses the bottle and requires her binky and frog to go back to sleep. Another theory would be nightmares, since the cuddling and consoling seems to work within a minute or two. And finally, we’ve never ruled out that her heart medicine, Captopril, is partly to blame since insomnia can be a side effect.

Even though the sleeping patterns have not improved, Ella looks better. Each day, we’re surprised how good she is looking. You can just tell in her color. And her behavior has always been telling of how she feels…and she has been in the best mood. In the past, we’ve had days at a time that we would term as “honeymoon periods”. Right now, we’re hesitant to believe that this is her new baseline, but that would be amazing if this was not a honeymoon!

Her OT and PT sessions went well again today. Not as much melting down, more tolerance of the exercises and better able to compose herself when she did get upset. Again, all signs that she is feeling better.

We’re so glad for Kelly too. As you might imagine, Ella is a lot of work…and she is so much more fun to take care of when she is feeling better!

Ella’s weight has stayed the same this week. We’ve only had minor fluctuations between 9.2 and 9.29 kilos for the week (20.28 pounds to 20.48). We’re still waiting to hear from her pulmonologist to hear if he has any thoughts on next steps. Since she cannot handle an increase in the food density, we’d like to simply increase her fluid. With the recent SVC procedure, our thought is that she may not be quite as fluid sensitive. Another option would be to change her diuretic dose, but we’d like to see if we can keep her current Aldactazide dose the same and not have to give Bumex every two weeks. That would be a big step to not ever have to use Bumex. She’s been using it in one form or another for 1 year and 2 months. Moreover, she’s required using some type of loop diuretic since she was born (before Bumex, it was IV Lasix in the NICU). The long term effect on her kidneys is not the best.

We’ll be watching her saturation levels when she sleeps over the next few nights. Last night, her saturation was not quite as strong as the previous nights. Either way, her oxygen requirements are still way less. This is when we wish that our home was not at an elevation of nearly 6,300 feet. We’re curious to know what her lungs might be capable of at sea level. Someday, we will get to travel with Ella to sea level. It will be interesting to see if there is a difference for her.

As I end the post and prepare for Ella night duty, we’re just so thankful for last week and the successful procedure. We’re still in a bit if awe and disbelief that Ella’s SVC is open…that Dr. Fagan was able to get it open and place two stents…all just one week ago today.

Deuteronomy 10:21 (NIV)
He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.