Monday, April 21, 2008
Sad day for Mr. Jonathan
Jonathan had a very long day. First they put the NG tube in, we went to x-ray, and then on to have lab work. He was such a brave little man, he did so well only one tear shed. After the tube was in Jonathan was VERY mad at me. He wouldn't look at me or talk to me. When I would speak to him he would put his hands over his face, this made the day really pleasant...NOT! It took him a few hours to quit gagging, then that made his nose run and eyes water. On the way home I had to stop by Sam's Club to pick up a few things....what was I thinking? (he sat in the cart I didn't let him walk, I'm trying to save face here) We were only in there for about 20 minutes, Jonathan picked out a Barney and Backyardagains DVD, by then he was soooo ready to go. A very nice lady checked us out and was very friendly to Jonathan. Well, as we are waiting at the door for them to look at our ticket I turned and see Jonathan crying. Jonathan very seldom cries about anything. His nose is running, tears are streaming down his checks, and he keeps saying " un go!" (want to go) I'm thinking at this point is why did I bring him to Sam's, and he's still gagging....UGH!!! I'm thinking we are still in Chattanooga I'm calling the doctor and see if they can do something to make this easier. As we get outside I come over to love on Jonathan and tell him it will be OK. He points back at the Sam's building and keeps telling me something that I don't understand...sigh...this is when we so desperately NEED better communication. At times like today we do LOTS of charades...Not Fun! He is still crying and I've ask him every question I can think of... do you hurt, did you want a hot dog, are you hungry, are you ready to go home, the list went on and on. FINALLY....I got this much from him "sad" and after 10 more minutes i came up with "the lady". So, I ask "the lady looked at you and now your sad ?" His reply "yes." like I've said before he is tough as nails, but wise and sensitive. Again the lady was very nice, Jonathan just didn't want ANY attention. Today was hard for me to see the boy that is ALWAYS so happy be so unbelievable sad, it breaks my heart. Oh' the gagging has almost completely cleared up. We came home and I was surprised ALL the other boys seem to be OK with the tube. I was worried about William, he likes to look after Jonathan and make sure he is comfortable. Home health called and said they would be here by 8:30pm no later than 9, yes that late. Well, at 9:30pm Arthur called to see if they were still coming. The man said yes, but he was still a hour away....What??? At 10:00pm Jonathan couldn't hold out any longer and we put him in bed.Here is the crazy thing this home health company was coming from Murfressboro 2 and a half hours away. Not sure why they didn't use one of the local companies like the one that does his CPAP mask. Around 10:40pm the delivery man drops off the pump and milk. We will start the feedings tomorrow night. I pray tonight that Jonathan keeps the tube in place, sleeps well, and wakes refreshed for tomorrow.