It's become very clear having met other NGLY1 families that respiratory infections that spiral quickly are a major challenge for many of these patients. Bertrand seems to end up in the hospital about every 18 months on average with an episode like this. (Living at altitude probably doesn't help either.)
And, even though we could almost anticipate this would happen at some point and even though we've been through this before, this hospitalization has still been harder than most.
For starters, everyone is sick.
I'm sick. Cristina is sick. Victoria is sick. Winston is sick. Aury is sick. My mom is sick.
Even the dog is sick.
|Penny's had enough of this.|
I went to Instacare to beg (unsuccessfully) for antibiotics:
|I've never been more annoyed to find out I didn't have strep.|
To make things crazier, there are at least two pathogens. One is strep. One is a virus. Each of us has one or the other -- except Bertrand, whom seems to have both, plus pneumonia.
Normally, when Bertrand gets hospitalized, we can stabilize him in 24 hours, and then he starts to improve.
While we've stabilized Bertrand once again, he hasn't really started to improve at all.
His O2 hasn't budged much beyond the low 90s, and his breathing is just as labored despite regular suction, albuterol treatments, cough machines, percussion vests and manual pulmonary therapies.
|Hooked up to lots of lung technology.|
|It's like wearing a lawnmower.|
The attending physician believes Bertrand has asthma, in part because he responds well to anti-inflammatories during these episodes.
Complicating matters, he's having clinical seizures again. While Bertrand's EEG remains abnormal, his clinical seizures had largely vanished for the past year.
And then yesterday, Bertrand had the worst episode we've seen in years.
Luckily, the medical team was rounding and able to witness it as it unfolded.
After witnessing for 5 minutes, they promptly ordered rescue medication (Atavan), which stopped the seizure instantly. The seizure itself was close to 20 minutes by the time it stopped.
Today, Bertrand just hasn't been himself. Normally, Bertrand is alert and cheerful most days. Since getting sick, he's been largely out of it, and I think that the sideways progress is agonizing for all -- and Bertrand especially so.
|Winston is done with this too.|
Thank you to all of you for your love, thoughts and support!