We are all EXHAUSTED.
Today we brought Gavin to the University of MN Fairview Hospital for his annual clinic visit in the Pediatric Imaging and Sedation area. This included getting an Infant PFT & bronchioscopy that he had to be sedated for. Which means, he couldn’t eat past 3 a.m. and could only have clear liquids until 6 a.m.
So, we were up at 2:30 a.m. to feed him as big of a meal as we could get in him (and boy was he confused!) then had him up again at 5:00 a.m. so that he’d be sleep deprived….(helps them fall asleep better with the meds).
Needless to say, all three of us were exhausted this morning. Not that you could tell once we got settled in a room. Gavin was standing up in his “crib” dancing, clapping and smiling for all of the nurses. But once they started poking him it was quickly apparent he was really tired, he wasn’t having any of it.
His FEV 0.5 took a big dive (which is how much of the inhaled air he exhales in half a second…the results of PFTs). Last August they were 125%…today, 94%. Now these numbers are still in the normal range (80-100%), but they are concerned as to why they took such a big hit. Casey and I both suspect he might have asthma, which would explain it, but only time will tell.
There is no need to panic at this point, they are trying to be aggressive and hopefully everything will be resolved quickly. An interesting point that our pulmonologist made was, had this been his first PFT performed they wouldn’t have thought twice about the results since 94% is in the upper normal range. However, when comparing the two it was obvious that something negative is going on. Just another reason why we are SO lucky to attend the U of MN for Gavin’s CF clinic appointments. They are aggressive and always on the ball. Had we not been attending a clinic that is adamant in performing Infant PFTs at six months AND one year, Gavin could have gone on for quite some time without us ever knowing something was wrong/going wrong. While we are slightly worried and disappointed in the results, we are thrilled to know that we are able to have access to such amazing medical care.
So, they added Mucomyst to our daily regimen of inhaled medications. We will go back in 3 months for another PFT and if that medication doesn’t do they trick they may also had Pulmicort. We will add it to the Albuterol he already takes. We will do all this while he uses his………..
That’s right! The Vest should arrive later this week and we cannot wait to get it! Just waiting for the Hill-rom nurse to call me back so we can get insurance/addresses etc verified! Our respiratory therapist trained us in on it today (Gav didn’t put it on yet, he was still “waking up” from the medications) and hopefully it’s as simple as she made it out to be! “Dummy Proof” as we called it! Ha!
Gavin will do two Vest treatments (while simultaneously taking inhaled medications) per day for half an hour each session. We already do one hour a day (total) of treatments with his nebs and manual CPTs so it won’t add time to his treatments, it’s just a different form of treatments…a better, more productive way!
Bad part? Apparently Mucomyst smells like rotten eggs. Yum.