Max Niemann Daily
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Max Niemann Daily was born May 28, 1994. He had reflux that was severe enough to require a nissan procedure at 6 weeks old. Now he has a g-button. He also has significant developmental delays, microcephally, a calcium metabolism disorder which affects his kidneys, hypotonia, and congenital glaucoma. He was tested to have a moderate hearing loss in both ears when he was very young and wore hearing aids, but now has tested to have normal hearing in one ear, and only a mild loss in the other.
He also has laryngomalacia (a floppy or unstable windpipe and voice box). His oxygen saturation level was dropping dramatically when he was asleep and in REM (rapid eye movement) level of sleep. We had no idea his sats were dropping so low. We were having a sleep study to see what was happening when he was retching and gagging (like dry heaves since he can't throw up because of the nissan). Five sleep studies, including a bi-pap and a c-papa which he failed miserably, later at 9 months he had a tracheostomy.
I'll never forget what a stressful time that was. It seemed like we would just get one thing diagnosed and under a little control when something else would happen. I remember standing in the ICU at Max's crib and just crying. The nurses were telling me a trach really wasn't all that bad, etc, etc, and all I could think about was "Yeah, right. He's going to have this hole in his throat and be hooked up to a blue tube. How do you know what it's really like to take care of their kids at home? You're just used to doing it in the hospital, not in the 'real world'. How can I work? How could I ever leave him to go to work? Who will I trust to take care of him? This is too much to ask of my mom and mother-in-law (who had been alternating caring for Max so I could work). They just are now barely comfortable with the g-tube. How am I supposed to work with all this going on? No one really knows what I'm going through. ETC. ETC. ETC." I had a thousand things running through my mind at the time. Intellectually I know that I could learn all about it and deal with it, but could anyone else? At the time I though the nurses were probably thinking, "get a grip lady?" But, as usual, I just needed to cry and grieve for Max, and then get on with it.
We were very fortunate to have a wonderful teacher in our nurse Paula Dimmit. She spent a lot of time with us at least twice a day get us comfortable with the trach care. But there were still some things that only another parent would know to tell me. I wish that I had found a place like this to go to the week or two before the trach surgery. I've put together some hints that might help.
- Carla Daily, e-mail Carlab315@aol.com
