Learning About Jamie's BiPap Machine

One of the first things we did with the machine was to hang out with just the mask on, no hose, etc... very loosely in front of his favorite movie at the time, I think baby einstien's baby moves. He of course hated it but the movie just mezmorized him completely and with a little coaching he would wear it for a few minutes before pulling it off which we let him do.

This allowed us to fit the headgear and get used to putting it on and taking it off. He thought it was funny when we put it on ourselves and we tried it on squishy poo doll and his baby too.

Our next effort was to put it on him in at bedtime with the hose and machine attached. Not too much fun to report here. We learned that you should put the mask on first with the hose attached, THEN turn the machine on. We felt completely stupid and probably scared the heck out of him those first few nights. I know now that a home health care worker should have and would have assisted us if we had pressed the issue. It would have helped some but probably not the stress levels any.

We must have read his Dr. Seuss books a jillion times those first few weeks. I can recite all of 1 fish 2 fish by heart. One of us would read while the other would gently control his hands and rub his back... This was not a smooth job. Our machine was set so high and it was leaking and he was very upset. We would try until it became too traumatic and give up and try again the next night. For the first week it was not uncommon to read to him for several hours before he would finally fall asleep or we would give up.

On those first nights of wearing the bipap machine that he did fall asleep, he rarely would make it through the night. The mask seemed to leak constantly and I was very clumsy at fixing it.

Some things that helped the leaky mask were; finding one that fit... This was the hardest part. We were lucky in that our home health care worker left us with several styles to try and the Soft Series Repironics mask (above) fit the best. The fancy ones were just too clunky and squishy and really too big. The trick with the Soft Series was to soak it in hot water and vinegar several times to soften it up as well as getting the headgear and the brow guard or the thing that changes the angle of the mask by pressing against his forehead correct. Mine was set too high. This was corrected by cutting away the material just a bit at a time until it stopped leaking around his eyes. Too low and it will dig a groove into his forehead. You can use soft medical tape to build it back up also if you cut it too much.

Jamie has a very wide nose and the wide model of this mask barely avoids pinching his nostrils on the sides. I use a black magic marker to mark off just a bit on either side and the bottom, then slide a piece of stiff cardboard into the nose hole and trim with a razor blade. At $50 bucks plus a shot I learned the hard way to be very careful. Over trimming did not completely destroy my mask but it was a bit more prone to sliding around his face. I keep old masks handy just in case. I have had them fail and it sucks trying to find a backup in the dark.

The mask when it fits right looks like if it just slides a little bit it will cover his nostrils. This seemed crazy to me at first and I trimmed the bottom quite a bit. Truth is though that the snugness of the soft part of the mask is what keeps it from sliding up. I still feel better trimming the bottom just a bit.

Mastering the settings on the machine and dropping the pressures way down would have made this whole process much easier for us but we had to endure at the very high settings the dr. had prescribed. We assumed that we were not allowed to change the settings. Stupid us.

On our Resmed BiPap machine, you press two buttons simultaneously then scroll down to the bottom of one of the menus and exit out ... good grief, let me go look.

It is a bit tricky to change the settings on our machine:

1. you press the green and red button at the same time and hold
2. scroll down to "efficacy data"
3. exit once, then twice and you should be presented with the "clinical" menu
4. press enter
5. select settings and press enter again
6. scroll up and down
   

You now can change the primary settings of the machine. Tread very lightly! The only settings I have ever dared to fiddle with are the trigger (set to high), IPAP, EPAP and backup rate. The dr. has recommended some changes to the rise time and I think I met her in the middle.

Jamie's settings are something like IPAP 10.4 and EPAP of 4.6 with a backup rate around 18. I can push him as high as 12.5 before it just completely blows past his mouth but I can not detect any improvement in breath sounds and he acts uncomfortable and is tired the next day.

I like his respiratory therapist allot, her name is Janice.