Hi. My son Jamie has CP due to birth defects and complications during pregnancy. He was born in 2002 and we went through all of the fun stuff 1st time parents of a special needs child get to go through: slowly realizing the severity of his delay, tests for super scary disorders that take weeks to get results for, near death experiences from things as common as a cold, month long stays in the hospital, etc... etc....
His dr. finally prescribed the use of a BiPap machine, alot like a cpap machine only it varies the pressures with his breathing, for him to wear while sleeping when he was about three years old. Before I go into how we got him to accept the machine I wanted to give you a bit of history...
Our drs prescribed the machine after a sleep study showed that he suffered from 2 common types of sleep disorders; central and obstructive sleep apnea. He would snore, (obstructive), and breath very lightly, approx. 8 breaths a minute, (central), that you could hear or feel. The sleep center did not test him with the machine. It was only after our meeting with the dr. to review the sleep study findings that the machine was prescribed and about two weeks later the home health care worker dropped the machine off pre-set to the drs recommended settings.
Jamie has had problems with very heavy mucus and is just kind of a "thick" guy. We had all of the chest congestion and "lack of coughing" issues that I suppose most low tone kids deal with. We can only assume that it was this congestion in his lungs coupled with athsma and the high bipap settings: approx. 16 over 8 with a backup rate of 20, that caused his left lung to collapse after a few months on the machine.
In the hospital once the chest tubes had done their job it was time to go back on the bipap again. I believed that the machine would help I just questioned the pressures. I had tried the machine on myself and found the pressures to be enough to pop my ears. I am not a big guy but it just seemed high to me and if it felt uncomfortable to me what does it feel like to a 35lbs kid?
I pleaded with anyone that would listen that I wanted to experiment with pressures. I had read where it is common practice for home health care workers to observe a child on a machine and adjust as necessary for comfort. The machine caused him to gnash his teeth and just seem very uncomfortable. The low MV alarm would go off constantly, (set at 2), and listening to him with a stethoscope, he had better breath sounds without the machine than with. This can't be right.
The drs finally gave in and gave me a prescription to manage the pressures under direction of a respiratory therapist.
The first night the therapist and I started him at the very lowest settings on the machine. I think was around 4 over 2 with a backup of 16. Jamie was pulling around 8 breaths a minute by himself so we thought to double that to create a rhythm between him and the machine. The low MV alarm still was going off but he really sounded better and slept well all night.
The next night we began to inch the settings higher. Just through observation and listening with a stethoscope he seemed to go best between 8 and 10 on the top and I think the general rule of thumb is to separate the high and low numbers by around 4-6. We eventually increased his backup rate to 18 also. The dr wanted over 20 but the machine just seemed to be hammering away at him rather than working with him.
Jamie's CO2 was quite high even when he was awake and the blood-gas tests are hard to do first thing when he wakes up. Not a fun way to start your day I am sure.
There is so much more to talk about... more later.
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