EVIL . . .

has arrived...

Its a VPAP III ST-A, with humidifier 

The BIPAP (bilevel positive airway pressure) breathing machine aids the patient to breath normally. It pushes air into the lungs by keeping the lungs open and thus allowing more oxygen to enter. A face mask is worn and supplies the needed pressure to keep the patient breathing in and out (inhalation and exhalation) so oxygen enters the air sacs within the lungs. A person who cannot breath completely on his own when sleeping, such as a person suffering with a history of respiratory problems, uses a BIPAP machine.

Weve had it 2 weeks now AND Jack hasnt been able to tolerate any part of it. 

The MASK smells, the head gear hurts/itches, the machine is too loud and when you turn it on, "the AIR is SUFFOCATING ME MOM!"

I dreaded this and knew it would be a difficult process. It will take a lot of time and patience with a child with extremes sensory issues, especially around the face and mouth. I just feel like we're never going to get there. For some reason his sensory issues has worsened these last few months, just getting a tooth brush in his mouth isnt without a fight. It took us years to get it in his mouth, now he is fighting it again.

The Home Health Care Company sent out respiratory care to go over the machine, how to keep it clean ect... She was suppose to be at my house at 10am and she arrived at 8:45am---shoot, I guess I cant vacuum now, grrrr.  I wasnt even home, I was getting all the kids off to school. So she said she would sit in my driveway and wait for me... Anyway, what was kinda funny is she walks in the door smelling like she had just smoked a pack of cigarettes in her car! this is Respiratory Care, right?  OK.

Anyway, she brought out 3 types for him to throw down try. BUT ended up not bringing any size small masks because as she put it, "I thought I was fitting it for a 8 yr old"  he is 8. "well I didnt expect him to be so tiny"  OK. NO worries she left us the demo. 

This one just fits over the nose.

According to Jack, this is the only one that didnt smell "as bad" 

But neither of us were successful getting him to put it on.

When Jack was inpatient this week, Respiratory Care came in our room and dropped off 2 more masks for us to try with the request of Jacks Pulmonologist.

This is a "Nose Pillow" type, they fit snug under the nose.

I  thought Jack would tolerate this one best since it doesnt actually go over

the nose or mouth, less claustrophobic feeling anyway. BUT, AH-NO.

This one has 2 soft prongs that fit in the nose.

They left me a "preemie" size, too funny because the head gear

is sooo tiny. But we could swap it out if he liked this one best. BUT, AH-NO.

 Dr. C (Jacks Pulmo) dropped by our room when he was doing rounds on Monday night and talked to Jack about how important it was for him to wear his mask every night. That he really NEEDED him to listen and understand that he can get sicker if he doesnt wear it. Jack nodded but I think all he heard was "blah, blah, blah, blah...."

I admit, Im worried. What if I can never get him to wear it. His labs are clearly getting worse, showing he's not compensating well at all now. 

Jack told me to slip it on him while he's asleep, even though I was warned by his Pulmo and Home Health Care, NOT to do this! It just freaks them out when they wake up. BUT Jack gave me the OK and I thought it was worth a try. NOPE, thats a joke! Theres no way I could fit it to his face while he's laying down--and not to mention his arms thrashing all about...

SO then I got so desperate one night and told him about what might happen if he doesnt wear it...I told him about a "TRACH",  explaining its like a GTUBE placed in his neck...Well, Im not sure that was such a bright idea. One night after he hyperventilated he ripped the mask off his face and broke into tears, holding his neck, crying "Now theyre going to cut my throat and put in a GTUBE!" It took me 20 mins to calm him down, reassuring him we would do everything possible to keep that from happening.

I just thought he being older it was a good idea to let him know the alternative but maybe that was the wrong approach. He clearly is freaked out about all of it and now the TRACH too!

SO whats the PLAN...

I was hoping if I can just get him to wear it for 10 secs, 30 secs, then 1 min, 2 min, ect...I might get him to keep it on eventually. But just getting it on for 5 secs hasnt worked out. 

Dr. C. says to have him wear it without the AIR on at first (but not too long without!) and then turn it on. Because the machine is really loud unless its up to your nose, this scares him.

BUT whats really hard is breathing through that puff of air. This machine will give him 12 breaths a minute whether he wants it or not, I admit its a bit scary. I tried it myself, and honestly theres no way I could sleep with that air being pushed into my lungs. So I can see how he feels. Although I know he hasnt given it much of a chance yet.

BUT what can I do but keep trying, Ive got to make this work. WISH ME LUCK!