The Next Phase
We’re now 12 weeks into Gia’s hospitalization with a current estimated discharge of November 3. If you’re counting, that’s 8 more weeks. As Kevin and I have tried our best to divide and conquer between being home with Roman and in the hospital with Gia (plus working), we rarely get to see each other for more than a few hours at a time when we switch shifts. Over Labor Day weekend, though, we had the opportunity to both be in San Francisco for a few days and even got out of the hospital Sunday afternoon to enjoy a nostalgic lunch at Perry’s on Union, where I used to wait tables when we lived in the City. It was refreshing and gave us a chance to reconnect for a bit.
In our last update, we were preparing for Gia's trach surgery. It went well, and we’ve spent the last 4 weeks acclimating. There have been plenty of ups and downs, and for a period it was quite stressful, but overall, Gia has adjusted and things are getting much easier for all of us. We’re determined and focused on chipping away at the long list of requirements so we can get out of here a bit quicker than they’re estimating. So far, Kevin and I have completed 2 trach changes each (1 more for each of us to go), I completed my CPR training, and we passed the home inspection by the medical equipment company to ensure we have a safe space for Gia when she eventually come home. The big tasks remaining are having 1 more caregiver complete their 3 trach changes and daily care sign-offs, 3-day home ventilator training, coordinating home health nursing, emergency scenario training, and our 48-hour room-in right before discharge, where the hospital will observe us caring for her and sign-off that we're capable caregivers.
About 2 weeks ago, we saw a concerning progression of her ROHHAD symptoms, including retaining CO2 during the day, excessive sweating, fatigue, irritability, among a few other things. They did another spinal tap to assess inflammation and look for additional antibodies that would suggest ROHHAD was becoming active again. Her inflammatory markers and antibodies had in fact increased, so they gave her a large dose of steroids and moved up her immunotherapies to try and quickly calm her immune system. We saw an almost immediate positive response, and it’s felt very much like she’s back at her baseline, which was such an incredible relief. With any new or worsening symptoms, it means that further damage is being done, and unfortunately these therapies are ony temporary. While her medical team continues to work through approvals and requirements for her long-term plan, they’ve decided to try intrathecal rituximab, which will go directly into her spinal fluid to better target what’s happening in her central nervous system. She’ll have that done today, and we’re hopeful it will help slow the progression of her disease in the meantime.
The respiratory team has since started doing HME sprints each day. The HME attaches to her trach and uses the moisture from the air she inhales and exhales to keep her airway from drying out. If she’s successful at maintaining safe levels of CO2 while on it, she won’t need the ventilator during the day, will have more mobility, and will be allowed to try food by mouth again. Because the HME requires more work and coordination, Gia doesn’t love wearing it, but we’re slowly working our way up to longer stretches. She will have a swallow study on Friday to assess her coordination to move toward eating.
We finally completed her MIBG and another MRI, and both came back clear of tumors - yay! Gia is also getting out for daily walks and her PT/OT have noticed meaningful gains in her strength. Outside of that, our days are filled with movies, games, playdoh, makeup parties, blocks, and being silly with the nurses. She’s recently gotten into Frozen and asked if we could throw a themed party to dress up for. She’d like to be Sven… the reindeer… LOL.
As we move into this next phase, it feels like we’re balancing progress and waiting. We’re checking off milestones, seeing encouraging signs, and getting closer to bringing our girl home, while waiting to hear whether the pieces are coming together for her long-term treatment plan. There’s a lot riding on the next few weeks, but the best we can do is remain optimistic and hopeful. Wish us luck
With love,
Linds & Kev