Posted (Tina) in All Posts on January-15-2009

Ella was up all night last night. Literally, every 20 minutes I was running down the hall to her room. She was uncomfortable and not able to sleep. I tried everything and nothing seemed to work. Between yesterday waking up at 3:30am and last night not getting sleep at all, it is surprising that I was able to function today.

You can tell that Ella doesn’t feel that great. She was just fussy and cranky, all day. We’re not sure exactly what is going on but our guess is the normal culprit: fluid. We opted to give her 1/ 2 dose of Bumex today (total 1.5 mg in the past 24 hours). While assessing her behavior and numbers tonight, we think she might need the other 1/2 dose of Bumex. She is requiring 1.5 liters of oxygen and her heart rate is higher. These are classic symptoms of fluid overload.

Speaking of additional fluid, she has been so thirsty! Last night, when I would run to her bedside, she was coughing and sounded dry. I would offer the bottle and she would down a bunch of liquid and then retch. After a spell, she would roll over and try to sleep. Twenty minutes later, we repeated the exercise. So throughout the night, she took way more than she is supposed to by mouth. This is likely not helping the situation.

We are going to wait until she is weighed in the morning by the home nurse. Last week, she was 8.66 kilos. If she is within .1 kilos of last week, we may opt against the Bumex. If it is higher, it is confirmation of fluid retention and means we need to give the Bumex. We’ll see how she sleeps too. Praying that she will sleep since we are exhausted!

Part of the rough week or so is that I decided to quit my job. Tomorrow is my last day. It was not a good fit for me; I was stressed all the time and didn’t feel valued. As I was struggling to make it work, especially since I felt God led me to the job, I kept asking for guidance on what I was supposed to learn from this situation.

Then, I also remembered that maybe this was not so much about me learning something as it was simply the timing of the situation. There is no way that we would have moved back into our house nor hired Kelly to take care of Ella if I had not been offered this job. But it was a short lived situation. It is a bummer that it did not work out, and yet, I am interested to see what the next steps are in this journey. There is a reason that it all worked out this way. I will be looking for something else, but in the mean time, I’m looking forward to taking a break for the next week or so. I have not had a break in a long time. Heck, maybe I’ll just plan to sleep in for awhile!

So once again, lots of change for the West family. We’re looking to Him for guidance as we take the next steps. And we pray that He will heal Ella’s fragile body and restore her health.