:'(

[tinyandme]

I think we've got pneumonia..or a lung infection..or something. Last couple days Haydens swallowing/choking/mucus has all of a sudden gone crazy. Have hardly slept since Tuesday, coughing, choking, gasping for air. Hasn't eaten more then a piece of toast.. Had Dr in yesterday, he prescribed the eye drop medicine and told me to get motion sickness patches as they cause dry mouth too. Also found us a loaner suction machine til ours arrives, hoping that helps. Feel do helpless...

Stupid ALS! If you were a person I'd kick you in the n@*s!

 

[cheerleader]

Interesting that you used the term "WE". Don't think most people realize WE are in this together, and feel the pain, hopelessness of the other person. Sometimes I think my hubby worries more about me than his own suffering. (Which can drive me crazy at times, as he is trying to take care of having everything in order in the house- furnace checked out, trees trimmed, a generator for power outages, etc.- when I really don't care about that stuff! Just want him to spend whatever time he has left enjoying the blessings we have! Think of the expression the AlLS clinic doctor used - "conservation of energy!" Guess his wanting to take care of me is simply termed LOVE!

 

[affected]

Oh so sorry, this so sucks.
If there is an infection or pneumonia he will have a temperature.

Keep the meds up, and we will hold your hand

 

[SMP51]

hoping Hayden has gotten better and you have gotten some well deserved sleep

 

[tinyandme]

No, def not better. Hasn't eaten, had more then a sip of water or taken meds since Thursday a.m. He's had a kidney transplant so if the dehydration doesn't get him the lack of anti rejection meds will sadly. Just a matter of time now i guess.. his parents, siblings and neices/nephews just left. Spent all day with him visiting, said their unofficial goodbyes.

 

[Barbie]

my gosh! This is terrible! hang in there sister...try to keep him as comfortable as possible. What is the doc saying? do you have someone there with you?

 

[tinyandme]

Saying our goodbyes. Dr says it's a matter of days. On oxygen now for comfort, nurse brought an emergency kit with morphine and stuff in it If needed. Sleeping now. Dr says his heart will probably give in his sleep, should be very peaceful. The best death we could have hoped for really. Trying to encourage kids to see it as a blessing, better this then possibility of years of further paralysis and complications...

 

[Nikki J]

I am so very sorry. Sending you strength and love and holding your virtual hand

 

[Barbie]

Oh I am so sorry, but yes I do think a quick death is a blessing.

 

[dalvin]

Thoughts and prayers are with you both

 

[Janie H]

So sorry, at least you have a good outlook on things. I think that if I were suffering I would want my CALS to do what you are doing.
God Bless,
Janie

 

[JimInVA]

I'm so sorry to hear about recent events. Our thoughts are with you...

Jim & Darcey

 

[affected]

holding your hand here...

I could feel the love and support of everyone here in those last days with my Chris, and now we are able to give that to you.

The end can be totally peaceful. We are never ready for it, but you can now give him the ultimate gift of loving him through this last stage.

 

[MaxEidswick]

Amy. please tell us about Hayden's life before and after you ...

Max

 

[Annie's Phil]

Many of us are grieving with you Amy. May you know peace and comfort.