Posted (Tina) in All Posts on August-12-2008

Our day seemed to pass quickly.

In the afternoon, we headed to the Children’s Hospital for lab work. It took a second nurse to try sticking Ella. Yuk – – I just hate having that done. And Ella can spot it coming and she holds her breath and cries really hard. She has been stuck so much in the past week or so. Her feet, hands and arms are bruised from needles. Fortunately, we get a little break. The next time we need labs will be a week from Thursday, on August 21st.

Her labs from today looked good. Last week, they had to give her more potassium. But today, everything was in normal range and her BUN was 29. So, she is staying dry. Along those lines, we have not had a single retch in days. I had never made the association of retching with her pulmonary edema status (being wet or dry), but I think the two are closely tied together.

We visited with Dr. Perry this afternoon. He had been out of town since last Tuesday and so we were catching up on all the details. Ella decided to take a snooze while we were talking about everything.

We have two conflicting reports on nutrition, one from the independent consultant that came to our home 2 weeks ago, the other from the nutritionist at the hospital. One thinks she needs more calories, the other thinks everything right now is fine. Dr. Perry is going to do his own calorie calculations and get back to me in a couple of days.

Tomorrow, there is a case manager coming to evaluate Ella to see if she can qualify for the Medicaid waiver program (qualify for Medicaid based on her own income which is zero). The wait list is 1.5 years, but first they send someone to verify and make sure that she qualifies based on her medical condition.

Ella enjoys playing with her oxygen tubing. Quite honestly, I’m not sure what she will do someday without the tubing!

Speaking of oxygen, I tried weaning Ella down to 750ccs last night. She seemed to be okay while sleeping so I left it overnight. Throughout the day, she almost seemed like she might need more, but her color was okay and she was behaving fine, so I left it. When we were at Dr. Perry’s, they tracked her at 96-97% saturation and heart rate between 155-165. That is so much higher than what it had been previously.

When I got home, I tried putting her to bed at 750ccs, but her heart rate seemed to be high. So, I tried increasing the oxygen. Right now, she is at least a liter, closer to 1.5 liters (tough to read the exact amount on the concentrator we have right now). However, her heart rate is still high. I’m not sure why it is so much higher, even compared to the last several days. Maybe keeping her on a lower oxygen amount for too long is causing her some grief? Typically, a raised heart rate simply means a fever or that she is working too hard. Right now, she does not have a fever so I am left to believe that she might be working too hard. It is such a guessing game – finding the right oxygen level.

But we know that God has a plan. Some days it is hard to remember that truth.

Psalm 145:8-9
The LORD is gracious and compassionate, slow to anger and rich in love. The LORD is good to all; He has compassion on all He has made.