We are getting closer to going home. We don’t have a date yet (I’m hoping sometime within the next week) but the TCC team has started discussing our plans for discharge. There is a flurry of activity going on at the hospital:

• BiPAP – The team is working on getting us a home BiPAP machine, which we will hopefully only need at night.
• Feeds – Jackson went from having a G tube to a G/J tube. He’s currently getting fed through the the J portion of the feeding tube, which is in his jejunum (part of his intestines), to prevent aspiration, and his meds go through the G tube. However, the J feeds require a feeding pump because the intestines cannot handle the same volume of food as the intestines and the pump is able to provide a constant, even stream of food. As such, we are learning how to use the feeding pump and we will get one to take home upon discharge. Our goal is to get back to a regular G tube.
• Sleep study -Jackson will undergo a sleep study tonight at the hospital. It’s fairly typical for children like Jackson to have sleep studies.
• Strength Training – I brought Jackson’s stander to the hospital a few days ago. I’m trying to get him in it once a day to build back up his strength as he’s gotten pretty weak over the past two months. We have also been getting him in the wheelchair at least twice a day to get him out of bed and upright.
• School – We’ve been inpatient so long and Jackson is healthy enough that he receives school instruction in his hospital room. Children’s Hospital has a school team that provides school lessons to children who are inpatient. Jackson receives 30-60 minutes a day.
• Coronavirus – With all the attention drawn to the Coronavirus, it’s hard to tell how bad it actually is; but, precautions are necessary after nine consecutive weeks in the hospital. We plan to disinfect our house prior to Jackson’s arrival at home, as well as implement rules for keeping him healthy:
  • We are reminding Luca to wash his hands every time he comes home and after he uses the restroom.
  • Jackson will be somewhat quarantined until this virus passes.
  • We may change our clothes and put them in the wash when we come home from work and school.
  • We are going to limit the number of visitors to our home.

As always, thank you for your continued prayers and support. I hope our next post is to let you know that we are busting out of here.