We had a good week with our friend Joe. He has some peculiarities but his music amazes the heart. Julie also had a good week…
Julie is recovering splendidly from her 4th surgery. She should be home by the end of the week!
Her breathing is making remarkable progress. She was removed from the ventilator last Wednesday skipping the CPAP machine and moving directly to the high-flow nasal cannula. Her settings were reduced almost each day from 4 liters/minute to 3 to 2. Sarah asked the RT about the build-up of moisture in the cannula and the doctor allowed Julie to move to the low-flow cannula on Sunday night. Yesterday, Julie was on the “go home” setting of .3 liters/minute.
Julie got off the pain meds on Thursday and started feeding through the g-tube right away. They started her on 10 cc per hour continuously and gradually increased the rate until she was at 28 cc per hour yesterday. Since her stomach is smaller from the surgery, she will continue continuous feedings for a while. Eventually, she will be able to get back to isolated “meals.”
She is taking bottles again, too. Yesterday, the OT was able to feed her 30 cc. She was asleep for Sarah and I last night and didn’t hardly take anything from the bottle, but the nurse had given her 30 cc just a couple hours beforehand, so we’re not too worried.
Sarah has had several good holding sessions with Julie almost every night this past week. She held Julie for about 4 hours on Saturday night, 3 hours on Sunday and Monday night. Her feeding tube is a little bit of a pain, but we’re getting used to it.
I just learned that Julie is being moved from the NICU to the regular nursery area this evening. The plan is for us to spend the night Friday in the hospital with Julie to get used to her current needs and then take her home Saturday.
There will be lots to do this week. We will need to arrange for the equipment for Julie, and make the remaining purchases to get her room ready. Our friend Joe will be here until Thursday noon. Sarah is learning so much that her head is about to explode. I finished a test on Saturday for my remaining class. Work is getting busy, too. It’s really a great week, so busy and intense!
Take some time to thank God for all His provision and care during these past four months – our adventure started on February 15th when we first discovered the mass in Julie’s chest.
Andy and Sarah Horn
I tried to take three classes during the summer semester. At registration time, I figured Julie would come home long before the summer began and we would have a relatively quiet summer. Within a couple days, I realized I had bit off took much and dropped the two Greek classes. My remaining three hour class just had some papers to write and a little lite reading – 3000 pages!
Our friend Joe caused us some stress at a time when our stress meters had already peaked, but the things Sarah learned and their jam sessions also relieved some stress.