NvrGiveUp
Active member
- Joined
- Jun 12, 2007
- Messages
- 42
- Reason
- CALS
- Country
- US
- State
- FL
- City
- Orlando
Hi everyone... hope that all of you are getting ready for a Thanksgiving feast. I know it's a crazy american holiday that probably should be called "thanks-taking", but still a good holiday where family and friends get together to spend quality time and say thanks. So for those of you in Canada and friends to the south, hope you are having get togethers with family and friends. T and I and our little white maltipoo Beijo will be driving from here in FL to VA... 12 hours it usually takes us. We are really excited because we will be surprising my dad and stepmother Wed night, then on Thanksgiving afternoon we will be heading over to surprise my mom. It's really funny how the secret almost got out because my 7 yr-old nephew thought I was coming home for Christmas and told my mom that. Hope she doesn't get dissapointed when she realizes that we are coming home for Thanksgiving and NOT Christmas. 
T feels bad that I will be the one driving the entire trip... we used to take turns. I'll be so excited to get there I'll be fine, and I'm usually good at driving long distances as long as I have some hot coffee beside me. Our dog is really good in the car too.
As far as T goes, we are so happy that we have the DC adapter that attaches to the car cig lighter for her bipap machine so that we can use it for long car trips. We should be just fine.
An update on T: she can still walk but very dangerously so I try to get her to use her walker at all times. She fell a few weeks back and hit the back of her head when she was walking from the bathroom to our bed. She still is feeling some dizziness if she is laying down and moves her head to quickly... we were told this is normal and could last for months. Hope not. She seems to be doing better as far as the dizziness. She still defiantly walks from the bathroom to the bed when I'm not looking... I'll see her sneaking by out of the corner of my eye... just like a little kid doing something she isn't supposed to do. We usually use the wheelchair when we go out and about, or this little scooter that a nice lady has loaned her (the lady wasn't using it I guess). T's breathing test (lung function test) did look slightly worse than the last time, but it didn't decline as steeply as it had the time before. Her CO2 is a little high, but they said not too high to start worrying extremely yet. Her weight is holding steady at 119 to 120 pounds (10 pounds less than when she was originally diagnosed). Her eating and swallowing is fine, but when she brushes her teeth she does get that "want-to-thow-up" sensation. Usually she cannot brush her teeth after eating. We usually brush her teeth first thing in the morning. When she is done brushing and starts to spit, I will stand behind her and hold her stomach, almost like I'm doing the Heimlich maneuver, but with both my hands folded together. This is for when she is trying to spit/cough up flem that seems to get crazy when she brushes her teeth. I will push in on her stomach area to mimick what would happen if she coughed and it seems to work well to help her cough. After a few minutes of spitting out "stuff" she sometimes still really feels like throwing up, but I talk her out of it and seems to work. She rinses with some water and then I splash cold water on her face and dry her off. Later in the day she sometimes just brushes her teeth with water and rinses with mouthwash because it is too much to use toothpaste. As far as T's outlook, she is really staying positive and somehow I am too. We know God is helping us, and we still haven't given up. Her neuro keeps trying to promote her getting a feeding tube, but T doesn't want one just yet. Her pulmonologist told us that she could wait until she went on the ventilator to get the tube if she wanted to. He knows that T wants to push it as far as she can... go as long as she can without tubes. Everyone says "when you go on a ventilator...", but we still say "IF she goes on a ventilator", meaning that maybe she might never have to go on one. Rebellious? We know.... but we like being rebellious. We did discuss if T wanted to go on a vent or not, and as of right now she said she does want to go on one if that time ever comes. She does reserve the right to change her mind though.
Well that's a long enough post for now... I hope all of you have some Thanksgiving-like joy next week, wherever you may be.
Hugs,
Pam :-D
T feels bad that I will be the one driving the entire trip... we used to take turns. I'll be so excited to get there I'll be fine, and I'm usually good at driving long distances as long as I have some hot coffee beside me. Our dog is really good in the car too.
As far as T goes, we are so happy that we have the DC adapter that attaches to the car cig lighter for her bipap machine so that we can use it for long car trips. We should be just fine. An update on T: she can still walk but very dangerously so I try to get her to use her walker at all times. She fell a few weeks back and hit the back of her head when she was walking from the bathroom to our bed. She still is feeling some dizziness if she is laying down and moves her head to quickly... we were told this is normal and could last for months. Hope not. She seems to be doing better as far as the dizziness. She still defiantly walks from the bathroom to the bed when I'm not looking... I'll see her sneaking by out of the corner of my eye... just like a little kid doing something she isn't supposed to do.
We usually use the wheelchair when we go out and about, or this little scooter that a nice lady has loaned her (the lady wasn't using it I guess). T's breathing test (lung function test) did look slightly worse than the last time, but it didn't decline as steeply as it had the time before. Her CO2 is a little high, but they said not too high to start worrying extremely yet. Her weight is holding steady at 119 to 120 pounds (10 pounds less than when she was originally diagnosed). Her eating and swallowing is fine, but when she brushes her teeth she does get that "want-to-thow-up" sensation. Usually she cannot brush her teeth after eating. We usually brush her teeth first thing in the morning. When she is done brushing and starts to spit, I will stand behind her and hold her stomach, almost like I'm doing the Heimlich maneuver, but with both my hands folded together. This is for when she is trying to spit/cough up flem that seems to get crazy when she brushes her teeth. I will push in on her stomach area to mimick what would happen if she coughed and it seems to work well to help her cough. After a few minutes of spitting out "stuff" she sometimes still really feels like throwing up, but I talk her out of it and seems to work. She rinses with some water and then I splash cold water on her face and dry her off. Later in the day she sometimes just brushes her teeth with water and rinses with mouthwash because it is too much to use toothpaste. As far as T's outlook, she is really staying positive and somehow I am too. We know God is helping us, and we still haven't given up. Her neuro keeps trying to promote her getting a feeding tube, but T doesn't want one just yet. Her pulmonologist told us that she could wait until she went on the ventilator to get the tube if she wanted to. He knows that T wants to push it as far as she can... go as long as she can without tubes. Everyone says "when you go on a ventilator...", but we still say "IF she goes on a ventilator", meaning that maybe she might never have to go on one. Rebellious? We know.... but we like being rebellious. We did discuss if T wanted to go on a vent or not, and as of right now she said she does want to go on one if that time ever comes. She does reserve the right to change her mind though. Well that's a long enough post for now... I hope all of you have some Thanksgiving-like joy next week, wherever you may be.
Hugs,
Pam :-D
