Hello! Wanted to get a quick update to everyone who reads Mary's Blog regularly.... unfortunately, Mary is back in the hospital again, after a visit in October with Influenza B (yes, we all had flu shots over 5 weeks before that). This time, she has RSV(Respiratory syncytial virus)!!!
Mary had been battling what we thought was a little cold since last Tuesday, and we were managing it well from home, then on Thursday, she appeared to be over it, wanting to spend the entire afternoon off her biPap, no fever, normal O2 sats and HR. Then, Thursday night, we awoke to alarms going off, Mary was de-satting, and was filled up with "junk" again in her lungs. We continued to battle from home, but we quickly realized that this had to potential to exceed our "at home" threshold. After talking with several of Mary's doctors throughout the day on Friday we made the decision to keep Mary at home for at least another night. Well, shortly after we finished a thorough treatment, we put Mary in bed for the night. I decided to stay in Mary's room and study, so that I could watch her numbers and suction her as needed. No more than 15 minutes after going to bed, she started to desat into the low 90's and essentially nothing we did would bring her numbers up, so we decided to take her to the local ER. Shortly* thereafter we were on the helicopter, once again, enroute to Newark.
Needless to say, Mary had a very rough night, she was exhausted, dehydrated, and generally feeling bad, she remained on supplemental O2 throughout the night. At a few points we were fearful of yet another intubation. But thankfully we were able to clear her lungs and avoid that (knock on wood).
Mary had a much better day today, but as many know with RSV and SMA, we are not out of the woods yet.
Please continue to pray for Mary, and for Kate and I, and Mary's wonderful doctors, nurses, and therapists, to have the strength and direction to fight this illness.
Also, a special thanks goes to our nanny, Shelby for getting all of Mary's equipment packed up while we were at the ER and helping out with Jackson until my mom, Julie could fly in tonight to help out.