One week without any talk of additional surgery and moving to the CPAP machine had made us confident in the previous update. Then we went to the hospital later that evening and everything changed…
We were feeling pretty sassy in our last update. Julie seemed to be responding well to the CPAP machine and we figured she was past going back to the ventilator.
Today, however, she failed her first blood gas test with really high CO2 levels. The doctor was very discouraged according to the nurse’s description and was talking about putting her back on the ventilator. Julie recovered for the afternoon test with normal levels, so we were thinking she was OK again. Unfortunately, she started the evening very rough, so holding her tonight was out of the question.
The staff is thinking that Julie hasn’t been blowing bubbles (meaning that she kept her mouth open allowing the air from the CPAP machine to go straight out her mouth and bypass her lungs). So, the nurse tonight adjusted Julie’s position several times so that she would keep her mouth closed and breathe deeply while lying on her tummy. It’s a delicate balance which was frustrating for Julie and really tough on us to watch.
I don’t put out updates everyday because I’m trying to find the patterns and discontinuities (and some days, I simply don’t have the time). Just when it seems that we know where we’re going and I put out an update, there’s some new twist. Instead of a straight line of increasing progress leading to perfect health, we’re working Julie through multiple problems each day. Some days, we wonder if it will ever end.
Otherwise, Julie is doing fine in all other ways: weight, temperature, feeding – and she had a diaper tonight that even the nurse was proud of! We don’t know if we need to find the right balance for her and/or wait until she finds the right balance for us.
One of our pastors came by last night to pray for Julie and us. It helped lift our spirits. We
continue to receive gifts of food. Others have helped Sarah with the 40 mile drive (roundtrip) to the hospital. We received word that folks in China are “down on their knees for Julie and parents.” Thanks to everyone near and far for your continued prayers for Julie and your support for us.
Andy and Sarah Horn
This visit began a series of visits when I spent the entire time listening to the CPAP machine for bubbles. If I heard bubbles for each breath, then I knew Julie exhaled correctly. Otherwise, she bypassed the mask and didn’t receive the full benefit of the CPAP machine. Correct breathing meant progress while the other meant another surgery and starting over again from scratch. I couldn’t imagine Julie living with the continual feeling of short-breath – like almost drowning.
I have mentioned big diaper loads in previous updates. One particularly large one took two diapers (Julie started filling a new diaper before the nurse finished changing her). Julie gave Sarah a three-fer this week. It took Sarah and a nurse several minutes to clean the mess and change the linens.
I observed silently through the process (slightly amused). I had managed to avoid all diaper changing up to this point. I would fetch and carry as needed, so I learned where the nurses stored supplies in the room. I also helped arrange tubes and wires when Julie changed positions. I helped with RT, too. But I left diaper changing and bathing to Sarah.