Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
So this is how Jerry's day started out, with friends and the Minion Life board game in the playroom. He was giggling and happy and playing the game enthusiastically. Then all of a sudden, he looked up and said, "I don't feel so good." His eyes got droopy and he turned very pale. All he had ingested at this point was some orange juice and his morning medicines.
We gave him a bed pan and he put it in his lap and leaned over it for a few minutes. Then he requested to go back to his room so he could sit in the bathroom for a while...back on the floor, head resting in his arms on the toilet seat. And there he fell asleep.
We got him back into his bed and he slept for four hours. He is so exhausted. They tell you to get lots of rest, but then come in every hour for your temperature and blood pressure. Last night, they came in at midnight for an x-ray of his stomach. Then at 3:45 this morning, they were in for blood, which thankfully they got from the PICC line so he didn't have to get stuck again.
Last night's x-ray revealed two things. First, his PICC line was about 4 cm short of where it needed to be in his heart. Second, his NJ feeding tube had slipped out of the opening to his small intestine and was twisted on itself...rendering it ineffective.
At about 2 pm today, they gave him a sedative in his PICC line and sterilized his room and set up for removing yesterday's line and re-inserting a longer one. Because he had already slept four hours, the sedative was not as effective as yesterday and he remained fairly alert and agitated throughout the procedure. Can't say as I could blame him. I didn't watch, but saw initial hole in his arm where the first line went when they pulled it out and had sympathy pains of my own for him. Didn't watch the new one go in!
While he was still under the sedation, they took him back down to x-ray and untwisted his feeding tube and replaced it back in the entrance to his small intestine. If it continues to slip out, they may have to surgically stitch it into place temporarily.
So once again, the protein-rich nutrients will begin flowing through his PICC line and the baby formula will be hooked up to his NJ tube for him to try and digest.
In other words, we lost a day in the calorie-pumping, weight-jumping, fat-building mission we are on. Kind of a three steps forward and two steps back day.
He has enjoyed the many visitors who answered the call to help him pass the time though. And he loves the playroom games. When he feels too sick or tired to walk down there, we bring the games to him.
Mick made me a collage of Jerry from back in November and Jerry yesterday. Can't wait to get my chunky monkey back.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.