Posted (Tina) in All Posts on June-6-2008

Thank goodness today has been somewhat low key.

Last night, we turned down Ella’s oxygen per the directives of her new pulmonologist. She was at 300ccs. That was all fine and dandy except that every time she moved during the night, the pulse oximeter would alarm. Each time, I would run into her room thinking that her cannulas had come out of her nose. Finally, I began to notice a pattern. It was simply the action of her moving over; it is that sensitive. Needless to say, I am running on low steam since I was up pretty much all night.

We received a call today from the pulmonologist. First thing, I asked about the pulse oximeter alarming all night while trying to maintain saturations of 92-94. Also, I told him that we’ve tried to keep her on 500ccs liter while she has been awake, but she dips down into the mid to high 80’s too often. So, the plan is to try 750ccs while she is awake today and 500ccs tonight. I’ve changed the settings on the pulse oximeter to try and minimize alarming, but am hoping that her oxygen level will simply be adequate and we will not find ourselves running into her room countless times throughout the night.

The pulmonologist reported that Ella’s echocardiogram yesterday looked great. The anatomy of her heart appears normal, it is functioning well and there is no sign of pulmonary hypertension. This simply means that her heart medicine is continuing to do wonders for her.

Speaking of heart medicine, Josh was a great husband and ran to the compound pharmacy all the way across town early this morning before work. This eliminated a trip that Grandma & I would have needed to make with Ella, just to give her early morning doses.

It was an absolutely beautiful day in Denver – – the weather was just perfect. This morning, it was slightly crisp, but it was warm in the sun. You could see the snow capped mountains and downtown from our patio. We decided to lounge back in the patio chairs. Ella fell asleep while we were reclined together in the chair. It was just the relaxing moment that I needed.

Later, it became a bit warmer and Grandma and I decided that we needed to get out of the house. I took the time to put together a new jogging stroller that I received last year as a gift and thought we would try it out. I figured that it might work well for Ella since the seat is more reclined. After all, The Bun’s favorite position is lying down.

As we neared our 15 minute stroll to Super Target, Ella fell asleep in the stroller. So cute…

Grandma went inside to get a few groceries for our dinner tonight and I just stayed outside on a bench watching Ella and noting all the busy people coming and going. As I looked out at the urban city and watched the buzz of activity, it did feel good to be back in familiar surroundings.

I’m looking forward to tomorrow. Josh is going to give me a break. It starts with as much sleep as I want in the morning and a day of running around with my Mom.

Thank God it’s Friday…and each day we thank Him for our precious girl.