Making Progress
Gia continues to progress! She’s officially on low flow oxygen and doing well. Nighttime is still concerning because the drive to breathe naturally decreases when you sleep, and with her hypoventilation it can put her in a dangerous place. They’ll continue to monitor this nightly, but ultimately want her sleeping with BiPAP because we’ve seen CO2 increases overnight. We’ve been struggling getting her to wear it consistently, but we’re going to do our best while we’re still in the hospital.
She’s also started physical, occupational, and speech therapies to help regain her strength. She’s very shaky and has a lot of muscle to rebuild, but Monday she put weight on her legs for the first time in a month. While she can’t stand on her own yet, they’ve been really impressed by her determination. Her speech is still pretty limited, which they believe is a combination of muscle weakness, neurologic recovery, and having been intubated for so long. We get smiles and laughs, though, which has been the best!
The speech therapist also cleared her to eat purées this week and I think she’s really enjoyed tasting real food again. She’ll continue getting nutrition through her NG tube until she’s ready to eat full meals by mouth. And yesterday, she got to go outside for the first time since she’s been hospitalized!
G should hopefully be fully weaned from her sedation meds by next week, which will be a big step for her recovery and put the withdrawal and delirium behind us. If all goes as planned, that should also mean we’re finally able to move out of the ICU and onto the regular pediatrics floor, which feels like a big step.
Our medical team is also consulting with specialists at Boston Children’s Hospital, where they’ve cared for more children with ROHHAD and may be able to offer insight into additional, more aggressive treatment options. The challenge with a syndrome like ROHHAD is that there are so few documented cases, and every child responds differently, so there is no standard treatment plan. If the team thinks Gia could benefit from a more advanced or less commonly used therapy, they may need to work with pharmaceutical companies and potentially the FDA for us to get access to those medications. Not a simple undertaking. We’ll know more about what those possibilities may be over the next couple weeks, where Kevin and I will need to seriously weigh benefits/risks.
Lastly, we finally got into Family House on Saturday, so we have a home base to keep our things, shower, and rest. It’s free for families with kids receiving treatment at UCSF and fully funded by donors. We feel so blessed to have FH as a resource now and to be seeing such great strides in G’s recovery.
Until next time…
With love,
Linds & Kev
