Posted (Tina) in All Posts on March-16-2009

Ella woke up about 5 times last night. Unfortunately, I was up from 3am – 8am, so I spent a lot of today catching up on zzzs.

This stinkin’ cold is still hanging on to Ella. She spent the day wanting to just be held, whining lots and just acting like she doesn’t feel good. I hope she doesn’t have anything else going on. It seems like it is just overall fatigue and her snotty nose that is bringing her down. So, her and Kelly had a mellow day. We even canceled her occupational therapy session, as we knew that Ella would not tolerate working on her least favorite activity (eating). We’re hoping that she feels better soon.

As of this morning, she weighed 9.55 kilos, which was her weight last Friday. We’re not sure if we are hitting another plateau in weight gain. We will watch the next couple of days closely and may increase her fluid again.

The great news is that we have not had to give Bumex and she has tolerated a large increase in fluid (200 ccs higher than right before her SVC procedure). Her numbers look great on reduced oxygen when she is sleeping at night. It tells us that her SVC being open is definitely the break we needed for her body to not be quite as fluid sensitive. Over time, we’re hoping this means that we can eliminate diuretics. We’ll just have to wait and see.

We have another week before our various doctor appointments: pulmonologist, pediatrician, hearing test, etc. In the meantime, we are going to try and get her better this week and take it easy.

Colossians 2:6-7 (NLT)
And now, just as you accepted Christ Jesus as your Lord, you must continue to follow him. 7 Let your roots grow down into him, and let your lives be built on him. Then your faith will grow strong in the truth you were taught, and you will overflow with thankfulness.