September 9, 2014
July 29, 2014
|Photo of Bertrand from last Wednesday. He was happy to be home! |
(Yes, the shirt says "chicks love me." Thanks, Abuelita.)
Despite the accessories, Bertrand is doing very well! He is down to nighttime oxygen only (but he refuses to leave the nasal cannula in).
Antibiotics are amazing.
Bertrand wasn't the only one on antibiotics. Victoria also tested positive for mycoplasma, and it is suspected that my 7 week long "cough" was as well. (Cue the mommy guilt for inadvertently infecting the kiddos.)
Meanwhile, Matthew had big deadlines at work (and a birthday), we've been fielding an avalanche of emails, and oh yeah, we have a 5 week-old baby.
Please forgive us for the delay.
If you have sent an email, I promise we will get to it. :) But, it wouldn't hurt to follow-up.
|Winston in one of my baby blankets made by Abuelita Elisa.|
Yep, it's blue. Everyone thought I was going to be a boy. Surprise!
July 23, 2014
This is your lung on NGLY1.
Bertrand is into a regular hospital room.
He improved rapidly yesterday (as measured by his ability to breath with decreased assistance), to the point where I got optimistic he might go home.
Unfortunately, his oxygen kept dropping on room air, so they wouldn't release him.
Today, he's still having lower oxygen on room air alone, but it's only problematic when he's asleep.
It's likely he'll be discharged soon, but with a home oxygen machine and portable tanks.
The NIH sleep study results came back, and they showed 10 central apnic episodes per hour (and low oxygen overall), so we'll also be looking at more complete and permanent solutions for his breathing, especially at night.
July 21, 2014
The view outside of Bertrand's hospital room: a double rainbow.
With all our heart, thank you.
Rushing Bertrand to the ER and the subsequent PICU admission were scary.
But, we've seen worse.
Bertrand is tricky to diagnose, but doctors managed to identify the cause of his illness quickly. And then to have it be bacterial and treatable? That is all good news.
The most surreal part of this entire episode has been that we had an NGLY1 community/family behind us for the very first time.
- The Wilseys were the first to know we were headed to the ER--before our own families.
- The Leftwich family coached us on exactly what to expect and do with mycoplasma pneumonia and offered support.
- The German NGLY1 mom sent funny memes which cheered me up.
- And, Pam Stinchcomb was my angel, holding my virtual hand through a mini breakdown. (The 19th was Winston's 1 month birthday. Will every one of his birthdays be in the hospital and all about his older brother? Will he resent Bertrand? etc.)
To be clear, we've always felt love and support from our friends in the broader rare disease / special needs / undiagnosed community, but to have people who knew *exactly* what we were going through, and *exactly* what we were feeling? It was transcendent.
I'm overwhelmed with gratitude and joy.
July 20, 2014
A very happy Bertrand, only days ago. Photo by Phil Toledano.
Bertrand had a rough night, but I think it was largely because he wasn't allowed to eat. The concern was that he was still at risk from aspiration during intubation.
During rounds in the morning, I explained that much of his current distress was now due to hunger. (Bertrand's hunger cry is distinct from his pain cry. And, I pointed out that he kept trying to eat the tubes near his mouth.)
I convinced them to start him on a little Pediasure through his nasal-gastric tube, and he stopped crying in minutes. He's now on a continuous feed and has been relatively peaceful.
In fact, he's slept most of the day, after about 36 hours of being too uncomfortable to rest.
He's awakened every two hours to vacuum out his lungs. It sounds about like throwing a wetvac in a swamp, and while it's uncomfortable, he clearly feels (and breathes) much better afterward.
The mechanical respirator hums in the background, giving Bertrand's breathing a Vader-like quality.