Party All Night.

It didn't take long after being at home to be exhausted... again. Since Drake wasn't swallowing well, it made it difficult to sleep though the night. Let me rephrase that, it wasn't difficult, it was impossible. It was like having a newborn again who couldn't only, not sleep, but not breath well either. We set Drake's bed in the living room so who ever was "on duty" could watch the TV and be near the kitchen (two important things to get through such trials). We already had the rocking chair in the living room so that helped as well. It was like a party all night long... every night. I don't remember even doing that in my 20's more than one night in a row.
Then there was the equipment that was sent home. The feeding pump itself, the IV pole, the loud obnoxious suction machine; then the bags, tube extensions, syringes (60cc & 10cc), tape and gauze. I didn't realize how these items would become a part of D's everyday life from there on.
D was not tolerating his "feeds" well. They stared him on a continuous flow. That meant the feeding pump was feeding him around the clock, 24/7. Yea, I agree, as much as I like to eat, that's a little too much for me too. So after about 4 days of him crying, choking and trying to vomit, I decided to cut the machine off for the night and continue in the morning. Guess what? He stopped crying and even got a couple hours sleep. Of course I was on the phone with the doctor first thing in the morning and they agreed to set up a feeding schedule to get him proper nutrition. ( I also didn't realize this would become an on going problem for the next few years...still going on as of 7/1/09)
I was able to set up a great line of communication (in other words, on a daily basis) with the feeding specialist, Dr.C-. She is a doctor who has made a difference in D's life. She not only returns calls, but thinks outside the box on ways to get your child to get the proper nutrition. I wish I had all the details of that written down or in my mind. We tried so many different volumes, rates, times, and formulas. Needless to say D is VERY sensitive and now we have added a "simple" stomach operation to help. I truly doubted myself weather or not I had done the right thing about having the G-Tube and Nissen done. Not that I had much choice with the whole aspirations thing, but as a Mom I still felt this horrible pain of guilt.
One thing I'll say and I've said it a over and over again. The doctors who care and especially the doctors who seem "too busy", don't have to go home deal with the trials of a special needs child. This is a life long process of trial-&-errors. It's physically, emotionally, and especially mentally draining. Shane and I have seen the faces of parents who older special needs kids. They all seem to look tired and drained. I guess after being up for 20 or more years, talking to doctors, battling with insurance companies, fighting for medicaid programs, trying to get the best teachers and therapists in the school system, testing witch drugs work and don't work, not to mention the everyday life epically if other children are involved. Can you imagine the parents who have multiple special needs children... WHEW!!! I think every doctor/intern should have to live with a family of a special needs child to see what really goes on when they leave the office.