Heath's Journey 4/16/09

Ok so it was a productive day. My dad is here and the kids where excited to show off Papa at schools. By 8 we where all in the car to drop them off. By 9:15 both where dropped of and Papa was given a tour of both schools.

First thing we had to do was go get my oil changed and my tires checked. The car had been pulling bad for 4 weeks and one tire was low on air. Well by 10:30 I had an oil change and 2 new tires. They where so bad that one had a bulging spot on it and the other was missing a cord!!!! They would not let me drive off the lot with tires that bad and thank god my Dad was here and asked them to look and suggest the oil change. I have been so into all things Heath that I have not done any car care in over 5 months. We could have had one blow at any time the way they where. $180 later and my car drives like new and is SAFE.

After my Dad and the pedi had a good LOL about baseball, he is a Mets fan and she is a braves fan we talked about Heath. It was good for Dad to come to the visit I was having a hard time explaning all that was going on over the phone to family in NY.

At Heath's appointment the pedi was shocked that the ENT would not talk to me about the results over the phone and wanted me to wait 2 months. She was happy to show me and let me read the results. It says that yes no major change from before. But that is because of details that did not bother to tell me.

On room air he only has an oxygenation of 71% and he had and ave of 86 apneas a hour. How did the ENT think this was something I did not need to know. The pedi said was a SIDS risk because this rises his carbon levels and shocked that they did not tell me just how bad he was. Reading more it said on 1/4 of O2 he only had 4 true apneas but a total of 168 minor obstructions (meaning he was trying to breath but unable to do it with out effort) but on 1/4 o2 his carbon did not get to a danger level and his oxygenation was better or perfect (between 95-99%).

As a parent she talked to me and said I had to live with him and I knew him better than anyone. After some hart to hart we agreed 1/4 was a good amount to use during the day and 1/2 was a perfect amount to keep him on at night until he can have another study. She said she would be happy that after every test we lowered his amount of O2, but if say next time they suggest 1/8 that we do the 1/8 during the day and then would try him on 1/4 at night. We agreed that my health just as important so I can do what he needs. If I want to keep him at 1/2 when I sleep it was fine with her.

So our plan is 24 hour O2 (that is new last time it was only when he was reclined or sleeping) but 1/4 during the day and 1/2 at night. And he has to have the nebulizer 2 times a day (7am and 7pm) even if I think he is having a good day and he can have it as often as every 4 hours should he need it.

I have a follow up with the ENT in 2 months and Heaths next well baby visit with the pedi in 6 weeks.

We also got some diaper cream from his yeasty looking rash (he could have thrush I was on Rx for the mastitis a few weeks back)

Only other news is she declared him handicapped and because it looked more long term and not just month to month she filled out a handicap parking form for us. I am sad we will still need the tanks, I am happy to have this little help. 2 toddlers and an infant in a parking lot is not fun then add in 3 machines and a O2 tank and well it can be down right dangerous. The closer I am to the doors the less time I have to be in the parking lot. This could also effect his SSI should he get declined with the current info they have. I have to go submit his new results and the handicap form to them.