July 6, 2017 1:00 pm
It's been an eventful morning. Joshua was very active today. By active, I mean agitated and bored. He played catch for a little while, but that's not enough to entertain him for very long. He tried to pull staples out of his head. He had lots of undirected energy. So after his morning nap, he sat up in bed with the intention of leaving. We pushed him back in bed and he relaxed. The nurse removed his heart and lung monitors and gave him his morning medications. Josh slept for a short time.
The physical therapist (PT) came and sat him on the side of the bed. He "dangled" for about 5 minutes then laid back in bed. It's a good start! Then the occupational therapist (OT) came to check his trach in hopes of downsizing. Sure enough they are going to downsize his trach from a size 8 to a size 6 today, and they are hoping to cap the 6 by this weekend so that Joshua can breathe normally through his nose and begin speech therapy.
OT also did a "swallow" test. She gave him ice chips that were sitting in grape juice. He crunched the ice chips and loved it! Then she tried a grape smoothie. He loved that so much that he kept reaching for it, and nearly snagged the cup from her hand when her head was turned. Then she gave him orange sherbet/vanilla ice cream (those snack cups we got on the "hot lunch" days). He loved that too. Think about how great it would be to have something in your mouth after eating and drinking nothing for two weeks. It was heaven for him. But his neck muscles are weak, so she quit feeding him the delicious foods and said she will try again tomorrow.
After OT left, today's nurse (Matt) removed the catheter. Well, he was GOING to remove the catheter, but Josh beat him to it. Josh wasn't expecting the aftermath of catheter removal, and it didn't go well. Because he can't talk, Josh expressed himself in a different way. He decided he was leaving. He threw his blankets off, pushed himself to the side of his bed, and tried to stand up. Stephen and Mary got him back into bed, but he would not relax. Determined to leave, he pulled out his PEG (feeding) tube.
So that's a much worse thing than we thought. Dr. Sean said he will have to do surgery to repair the hole in the stomach wall, but about 5 minutes later he came back to the room and re-inserted the tube. He's not sure that will actually work. We are currently waiting for x-ray to come to put contrast through the tube to see if it has been re-inserted correctly. If not, Josh will have to go into surgery to repair the damage and have the tube surgically reinserted.
It's been an eventful morning. Joshua was very active today. By active, I mean agitated and bored. He played catch for a little while, but that's not enough to entertain him for very long. He tried to pull staples out of his head. He had lots of undirected energy. So after his morning nap, he sat up in bed with the intention of leaving. We pushed him back in bed and he relaxed. The nurse removed his heart and lung monitors and gave him his morning medications. Josh slept for a short time.
The physical therapist (PT) came and sat him on the side of the bed. He "dangled" for about 5 minutes then laid back in bed. It's a good start! Then the occupational therapist (OT) came to check his trach in hopes of downsizing. Sure enough they are going to downsize his trach from a size 8 to a size 6 today, and they are hoping to cap the 6 by this weekend so that Joshua can breathe normally through his nose and begin speech therapy.
OT also did a "swallow" test. She gave him ice chips that were sitting in grape juice. He crunched the ice chips and loved it! Then she tried a grape smoothie. He loved that so much that he kept reaching for it, and nearly snagged the cup from her hand when her head was turned. Then she gave him orange sherbet/vanilla ice cream (those snack cups we got on the "hot lunch" days). He loved that too. Think about how great it would be to have something in your mouth after eating and drinking nothing for two weeks. It was heaven for him. But his neck muscles are weak, so she quit feeding him the delicious foods and said she will try again tomorrow.
After OT left, today's nurse (Matt) removed the catheter. Well, he was GOING to remove the catheter, but Josh beat him to it. Josh wasn't expecting the aftermath of catheter removal, and it didn't go well. Because he can't talk, Josh expressed himself in a different way. He decided he was leaving. He threw his blankets off, pushed himself to the side of his bed, and tried to stand up. Stephen and Mary got him back into bed, but he would not relax. Determined to leave, he pulled out his PEG (feeding) tube.
So that's a much worse thing than we thought. Dr. Sean said he will have to do surgery to repair the hole in the stomach wall, but about 5 minutes later he came back to the room and re-inserted the tube. He's not sure that will actually work. We are currently waiting for x-ray to come to put contrast through the tube to see if it has been re-inserted correctly. If not, Josh will have to go into surgery to repair the damage and have the tube surgically reinserted.
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ReplyDeleteHi, Mary. Jennifer Trinchero here. I have been reading the blog every day to see how Josh is doing, and thinking of you, Paul and your family. ❤️❤️❤️❤️ You may recall I'm a speech pathologist. I wanted to share that Josh has been through so much trauma, but I suspect that you will observe some improvements in receptive and expressive language as he continues to heal and the swelling in his brain decreases. And of course when the trach comes out. Love to you, Sweet lady.
DeleteThanks, Jennifer. Long time no see!! I didn't remember that you are a speech pathologist, but that's awesome! Trach will be capped by the end of the weekend and will comes out next week (if he doesn't pull it out again before then). I look forward to hearing his voice again. I miss it.
DeleteThank you for reaching out. And most of all, thank you for giving hope. If you are interested, feel free to stop by OHSU. We will be here another week ... at least. We'd love to see you again!
I'm sorry, I think my reply to your reply didn't post. I'm not the greatest with technology. I will be back in town this weekend from a family reunion and would definitely like to visit this coming week. Thank you for the offer! I will call you.
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