Getting the CPAP mask to fit Julie has proven more of a problem than we expected. She kept trying to pull the mask off and the nurses kept devising more intricate methods of foiling her plans. The ongoing battle reached epic proportions…
I mentioned last week that I keep looking for the patterns and discontinuities. The pattern for the past couple of weeks, it seems, has been that we get our hopes up only to be slapped down again.
The doctors are still worried about Julie’s progress. They are still contemplating another surgery or performing a Tracheostomy (breathing tube in Julie’s chest) and sending her home with a breathing machine. She might have to deal with the machine for a couple years until she grows out of it. So, we’re frustrated and worried sick.
They replaced some of the parts on the CPAP machine and it made a huge difference for Julie. We’re praying that it will be enough to keep from having to do anymore procedures or surgeries.
Sarah spent a long day at the hospital today and she’s exhausted. Julie looked good and was very responsive. Sarah held her for a couple hours. She brought Julie some more clothes and blankets.
I attached a picture from over the weekend with Julie in her new crib. She had a musical toy in the crib Saturday.
Please continue to pray that Julie will recover so that she doesn’t need the machines.
Andy and Sarah Horn
We are really worried about a tracheostomy because of the stress that it will put on us and Julie.
Also, it just didn’t feel right. It didn’t resolve the problem, so I resisted the procedure. There must be another solution.