Everything was delivered in record-speed and we were up and running only 3.5 days after the doctor ordered the new treatments. Saturday morning (August 6, 2011) marked our first neb treatment. We had given neb treatments to our older kids before so had an idea of what to expect but it's been a while. We decided it best to do first thing when Dean wakes up - give him a head start on the day, get everything done with first thing and start our routine off that way.
Pulmozyme takes a whole 5 minutes to go through the neb so we were fortunate that we only had to hold him tightly for a short amount of time as he wriggled in our arms. First I tried holding him, but I didn't make the mask tight enough so he was easily able to pull it off. He's 25 pounds too so he has a little punch to him as he writhes and wiggles all over. Jim had to take over and secured his arms down as he held the mask to his beautiful face. The five minutes went quick in retrospect, but seemed to take forever at the time. Dean was confused, agitated and wanted nothing to do with all the new gadgets in his room.
Immediately following the Pulmozyme, we started the vest for 10 minutes (Doc ordered 20 but we were told we could ease into it for a few days). Dean didn't like it for the first 2 minutes, but we had a tip from our Respiratory Therapist to save a new game/toy for this time so we had some stacking blocks that distracted him and kept him "busy" for the next 8 minutes. Along with Evie who kept cheering him on and telling him what a good boy he was. Dean was sitting on my lap during the 10 minutes and I was truly shocked at how strong the vibrations were against my chest, I could only imagine the feel on his little body. He did make a few sounds during the treatments and his little voice vibrated as if he was talking into a fan.
That first weekend, Dean just coughed and coughed, spit up a little mucus and continued to cough all through the next week, which isn't typical of him and we were told not typical at all. However after meeting with the doctor again on the 16th, he explained that the cough receptors are near the larger airways so as we're "moving this mucus" from the smaller airways to the larger airways so he can expel it, it's triggering some cough receptors. Absence of the sign of any other symptoms of a cold, we left the office that day with no further meds (whew!) but instructions to wait 30 minutes after the pulmozyme to start the vest treatment (in order for the meds to work).
Changing our routine so soon after getting established proved to be a setback and then the 18th proved another interesting day for us. After finishing his treatments and setting him in his highchair to eat, Dean gobbled his oatmeal as he was starving from waiting to eat. After finishing, and setting him down out of his chair, he couldn't walk straight or normally; he resorted to crawling, became irritated, clingy, grumpy and just not himself. After a trip to the pediatrician and some back and forth emails with the specialist, it was concluded that he had neuropraxia but we all couldn't agree on whether it was from the vest or from a compromising position. Either way, he's now better and it was a one-time issue.
The hard part now is finding out the timing of the treatments. First thing in the morning works well but Dean is sometimes starving so it doesn't work and now with new school routines, we're in a constant state of change. Each day gets subsequently better. We learned he likes to sit on our laps, lay his head against our chest, keep in his binky and is fine as long as we don't put the mask string around his head. Just keeping our Bubbles the Fist Neb Mask against his face is enough. I think he just doesn't want us messing with his curls!
Cali, Owen and Evie are so attentive and helpful and want to hold him during the vest treatment. They talk to him and tell him what a good "buddy" he is - I think it calms him to be near them.
We'll get it all figured out. We're blessed enough to only have to figure this out once a day....for now.
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