It's been so long that this will be a chapter approach
chapter 1 of my most recent update...
I have been pretty busy in and out of the hospital, in cleveland and at home :(
I was admitted to cleveland clinic on August 7th and discharged on August 25th. I went to my appt with Dr. Kroh and then they sent me to see the nutritionist the next day and as soon as she saw me, and how much weight I had lost she said I needed to start J-tube feedings and it had to be in the hospital because it is dangerous to start j-tube feedings if your nutrition is compromised that badly, and she said it would only be a couple of days to get me stabilized, so my daughter and I had a hotel room, but there was no way I was sending a 16 year old to stay in a hotel room by herself and my hubby couldn't come up for a couple of days due to work, so they let her stay with me in my hospital room. I had to go through the ER to be admitted, but I had the most fabulous nurse named Becky, I will never forget her, she was the best. The nightmare started after that. I can only guess that the tube feedings went so badly because my small intestine is not absorbing, but in a week they tried about 5 different formulas with disastrous results...uncontrollable vomiting, pain, and diarrhea...after that week I begged them to stop doing anymore tube feedings and try TPN, so on August 20th they placed a Hickman catheter (IV in the chest) and started TPN (IV nutrition/vitamins)...I spent 3 weeks in the hospital, got out on August 25th...it was way too long...more to come, laptop battery croaking...to be continued
I have been pretty busy in and out of the hospital, in cleveland and at home :(
I was admitted to cleveland clinic on August 7th and discharged on August 25th. I went to my appt with Dr. Kroh and then they sent me to see the nutritionist the next day and as soon as she saw me, and how much weight I had lost she said I needed to start J-tube feedings and it had to be in the hospital because it is dangerous to start j-tube feedings if your nutrition is compromised that badly, and she said it would only be a couple of days to get me stabilized, so my daughter and I had a hotel room, but there was no way I was sending a 16 year old to stay in a hotel room by herself and my hubby couldn't come up for a couple of days due to work, so they let her stay with me in my hospital room. I had to go through the ER to be admitted, but I had the most fabulous nurse named Becky, I will never forget her, she was the best. The nightmare started after that. I can only guess that the tube feedings went so badly because my small intestine is not absorbing, but in a week they tried about 5 different formulas with disastrous results...uncontrollable vomiting, pain, and diarrhea...after that week I begged them to stop doing anymore tube feedings and try TPN, so on August 20th they placed a Hickman catheter (IV in the chest) and started TPN (IV nutrition/vitamins)...I spent 3 weeks in the hospital, got out on August 25th...it was way too long...more to come, laptop battery croaking...to be continued
Jules RNY 10/30/2007
Dear Jbird,
My prayers are with you and your family. Your problems almost mirror mine. I hope that you start to feel better soon. Do they have any ideas about why you are still vomitting or getting daily nausea? I don't know if this will help you but this works 85% of the time for me with my N&V. I take zofran ODT 8 mg (ODT stands for oral disintegrating tablet), then 2 hours later I take 50mg of Promethazine, then 2 hours later I take 10mg of Reglan. Then 2 hours later I start over again. After a day or so it seems to keep most of it under control but then I get my bad days where nothing helps. Keep us posted. I would love to know if they find an answer so maybe it may help me. I'm too the point where I vomit in my sleep and I aspirate and usually end up with pneumonia. The only thing left to fix me is sewing my vocal chords shut and giving me a permenent trach to protect my lungs. And at age 41 I don't want to live like that. So hopefully they will figure out something soon.
My prayers are with you and your family. Your problems almost mirror mine. I hope that you start to feel better soon. Do they have any ideas about why you are still vomitting or getting daily nausea? I don't know if this will help you but this works 85% of the time for me with my N&V. I take zofran ODT 8 mg (ODT stands for oral disintegrating tablet), then 2 hours later I take 50mg of Promethazine, then 2 hours later I take 10mg of Reglan. Then 2 hours later I start over again. After a day or so it seems to keep most of it under control but then I get my bad days where nothing helps. Keep us posted. I would love to know if they find an answer so maybe it may help me. I'm too the point where I vomit in my sleep and I aspirate and usually end up with pneumonia. The only thing left to fix me is sewing my vocal chords shut and giving me a permenent trach to protect my lungs. And at age 41 I don't want to live like that. So hopefully they will figure out something soon.
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