Hello

[Debbie54]

Hello Everyone,
Just letting you all know Matt is going to have a feeding tube put in on the 9th of Sept. He has finally seen the ALS Doctor. The doctor put him on the ALS drug and gave him a motion patch to put behind his ear every three day to help with the drainage.:-D He can still eat some soft foods an then there are days when he can`t get any food down at all.
He had to take him to the hospital last week about 1:00am because he was having hot spells and broke out in a cold sweat. The Dr. said he had swallow wrong , it went down his wind pipe. He really scared me an my daughter. We are working on a BI Pap too.
Yesterday was our daughters' birthday, so we took her our to eat at a fish camp. He ate good,he had founder baked and pinto beans an mash potatoes with lots and lots of gravy. :lol: We had a great time. I am so glad that he is in good sprits. It help me out a lot.
I will let you all know how the feeding tube goes.
I am praying for you all with this awful disease. It is very hard but we all have each other . I have done a lot of crying and will do some more in time I know. I am getting some help soon. I just need someone to talk to in person.
God Bless Us All!
Debbie:wink:

 

[BethU]

Debbie ... how wonderful that you had such a good time, and that Matt was able to enjoy the day with his family. He sounds like a really strong and resourceful guy. Let us know how the feeding tube goes. We'll all be praying for him and for a smooth transition.

Good luck to Matt, and blessings!
BethU

 

[brooksea]

Hey Debbie!

Hope the feeding tube goes well. Let us know!

Glad you had a good day at the fish camp. How old is your Daughter?

If you can't get a loaner BiPAP from the ALSA loan closet, then you might want to give a little hint to your hubby that his FVC needs to be below 50% to get the rx for a BiPAP. So if he can breathe better than that, he may want to have a bad breathing day when they are testing him at the clinic.:wink:

 

[brendapals]

Hey Debbie and Matt-

I sure wish we could all get together in person for support! But this forum is the next best thing!
My prayers will be with you and Matt daily, I'm sure the feeding tube procedure will be a piece of cake (don't tell Matt though-he might get hungry!:mrgreen: ). He and you both sound like strong people and you will both be fine. Let us know how he does-

Never give up,
Never let up,
Never lose faith,
brenda

 

[CindyM]

Great update, Debbie. Thanks for sharing.

 

[hopingforthebest]

Hi Debbie

Hi Debbie

Happy birthday to your daughter! That is wonderful that Matt got to go out and enjoy a great dinner. Yumm it sounded good.

You will have those times when you need to cry Debbie. Our PALS deserve our love and tears. I try not to cry in front of George lately. We had our days of crying together and that too is okay.

Keep in touch on this forum. I cannot tell you how much I have gained and learned from all our friends on this forum.

Praying for a cure!

Patty:-D

 

[Debbie54]

Thanks to you all for all of the support. My Daughter just turned 34. She is my step-daughter, but she is my Daughter now. I have three kids and he has two. My kids live three hours away. My son is also 34, Then I have a daughter 31 and she a nurse, then a son 28. He has a son who is 33. I love them all. But thanks again for all the love and support.
Hugs and God Bless You All.
Debbie:wink: