50 Days in the ICU
We’ve officially surpassed 50 days in the ICU. It’s incredible how resilient and adaptable Gia is in all of this— she’s become quite comfortable with her nurses and the medical equipment, helping them put on or take off her sensor stickers, strapping on her blood pressure cuff, and learning everything the nurses do day-to-day. She was also cleared to go to the playground on the regular pediatric floor, which has been the highlight for all of us this week.
As her team has continued to monitor her sleep, they’ve noticed she has both central (brain) and obstructive apneas, including one that lasted up to a minute long. For BiPAP to adequately work, she needs to initiate enough breaths and have a clear pathway for air to move, both of which she does not. After much consideration, it’s been decided that a tracheostomy is the best way to provide her with the most reliable ventilation when she sleeps. Her surgery is this afternoon and she will be sedated and restrained for 5-7 days while the trach heals. Gia will then go through a desensitization process while Kev and I start our trach care, equipment, and emergency training, all of which is expected to last 6-9 weeks and is highly dependent on how comfortable we all become with the new normal. The team was very honest that this would be quite difficult because of Gia’s age, but we’re hopeful that we can get her through it.
As we’ve spent the last week prepping ourselves for what’s to come, it’s been tough to process, especially after our previous update and how it seemed like she was progressing. During the day, Gia is talkative, silly, and energetic, and you would never suspect anything was wrong, but nighttime with ROHHAD is a different beast and has shown us just how unpredictable it can be. We’ve felt an overwhelming sense of defeat with this progression, but we know a trach is the best option to keep Gia safe and will get us one step closer to bringing her home.
In my last update, I mentioned Gia was scheduled for an MIBG scan. Unfortunately, we weren’t able to complete it because she was mistakenly given broth that morning, when she was supposed to only have clear liquids beforehand. For now, the MIBG is postponed until after she recovers from her surgery.
We also met with her team on Tuesday to discuss the developments of her ROHHAD treatment plan. There are a number of logistical and regulatory humps they’re working through, as well as trying to get a pharmaceutical company and/or educational institution to provide the means for treatment and cover the huge cost, since insurance will not, plus the FDA approval after that. The entire process could, and will likely, take months to hear back on.
Thank you all for the continued visits, care packages, and love you’ve shown us while we still navigate this with our sweet girl. Please help us pray for a smooth surgery today, recovery ahead, and that this brings Gia the stability she needs.
With love,
Linds & Kev
