Family and friends,
As we patiently await the results of the camera pill test to finally hopefully find out where Bob is mysteriously bleeding from, I thought I'd share what happened on Saturday with Bob and the speech therapist. The speech therapist on Friday gave Bob a Passy Valve which we can put over his traech that gives him the ability to speak, very hoarsely, but speak nonetheless. So Saturday she comes back and tells Bob that she's going to give him a swallow test to see if food or water will go into his stomach or aspirate into his lungs. Bob's eyes lit up like a kid at Christmas, he's been begging for any type of water or ice since he's been awake due to the soreness of his throat having the tubes in for the last 3 weeks. So much so that he's stop anybody that's walking by and ask them for a piece of ice. He'll ask every 5 minutes for 6 hours straight, and I joked with him that he reminds me of a crack head. Anyway, his prayers were answered. The speech therapist walked in with a glass of water and some applesauce, mixed it with green dye so she could see if it came out his traech, and he went to town on it smiling from ear to ear. My big concern was that Bob still has a severe lung infection and he's coughing up phlegm so forcefully out of the traech that it's shot across the room and stuck to the far wall (gross but accurate). And the pulmonologists main concern was that if he did have sugar and it got into his lungs he could restart growing the fungus that was in there before. As my role of patient advocate I felt is was my responsibility to tell the speech therapist what the pulmonologist said, and Bob said I was stealing his pleasure of eating. Be that as it may, I'd rather see him alive without a lung infection, then have instant gratification of green applesauce. So she only let Bob have 2 bites, but he said the green applesauce was the best he ever had! As she expected, he did expectorate it into his lungs and he coughed it out through the traech tube. She said he needed to practice speaking for the rest of the weekend so that his lungs and throat get stronger and that today she'd come back and test him again. Needless to say, Bob's new question became, "is the speech therapist coming back soon?" I got that question 10 times yesterday!!
Bob is alert and got to have a video conference call with Christopher yesterday. It went very well and it was fantastic to see him smiling. Just to let everyone know, yesterday I started reading every one's emails to Bob. Although I might not have time to write you all back, please know that I am reading all the emails myself and also now reading all the old ones everyone sent to Bob. Thank you again for all the kind words.
I'll write again as soon as I hear back from the GI doc on the source of Bob's bleeding (cross your fingers). If they can't pinpoint it, I'm not really sure what to do next.
Love and thanks,
Michele
As we patiently await the results of the camera pill test to finally hopefully find out where Bob is mysteriously bleeding from, I thought I'd share what happened on Saturday with Bob and the speech therapist. The speech therapist on Friday gave Bob a Passy Valve which we can put over his traech that gives him the ability to speak, very hoarsely, but speak nonetheless. So Saturday she comes back and tells Bob that she's going to give him a swallow test to see if food or water will go into his stomach or aspirate into his lungs. Bob's eyes lit up like a kid at Christmas, he's been begging for any type of water or ice since he's been awake due to the soreness of his throat having the tubes in for the last 3 weeks. So much so that he's stop anybody that's walking by and ask them for a piece of ice. He'll ask every 5 minutes for 6 hours straight, and I joked with him that he reminds me of a crack head. Anyway, his prayers were answered. The speech therapist walked in with a glass of water and some applesauce, mixed it with green dye so she could see if it came out his traech, and he went to town on it smiling from ear to ear. My big concern was that Bob still has a severe lung infection and he's coughing up phlegm so forcefully out of the traech that it's shot across the room and stuck to the far wall (gross but accurate). And the pulmonologists main concern was that if he did have sugar and it got into his lungs he could restart growing the fungus that was in there before. As my role of patient advocate I felt is was my responsibility to tell the speech therapist what the pulmonologist said, and Bob said I was stealing his pleasure of eating. Be that as it may, I'd rather see him alive without a lung infection, then have instant gratification of green applesauce. So she only let Bob have 2 bites, but he said the green applesauce was the best he ever had! As she expected, he did expectorate it into his lungs and he coughed it out through the traech tube. She said he needed to practice speaking for the rest of the weekend so that his lungs and throat get stronger and that today she'd come back and test him again. Needless to say, Bob's new question became, "is the speech therapist coming back soon?" I got that question 10 times yesterday!!
Bob is alert and got to have a video conference call with Christopher yesterday. It went very well and it was fantastic to see him smiling. Just to let everyone know, yesterday I started reading every one's emails to Bob. Although I might not have time to write you all back, please know that I am reading all the emails myself and also now reading all the old ones everyone sent to Bob. Thank you again for all the kind words.
I'll write again as soon as I hear back from the GI doc on the source of Bob's bleeding (cross your fingers). If they can't pinpoint it, I'm not really sure what to do next.
Love and thanks,
Michele
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i wonder if they could give bob a sugar free jello. no sugar to fuel the infection and cool to sooth his throat....just a thought
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