It's going to be a long night..

[ReneeM]

My sweet Karl struggled all day with 1st nausea then severe bout of mucus and is having trouble breathing. Never had these symptoms before. Had to give 2 doses of Robinul just to stop the mucus and morphine and adavant. He went to sleep at 9:30 pm.. he just said he was so tired.

Nurse practitioner is due out tomorrow at noon but she did say that with his quick progression she was afraid he would progress into the later stages at a very rapid rate once they started.

Going to be a long night... checking in on him every hour. Saying my prayers that he will be with us for just a little more time... things are moving far too fast...

 

[VoiceforLinda]

Renee, I will be in prayer for Karl. It is so scary when breathing is compromised. Both for you and for him. I pray that he will have a peaceful uneventful night and wake up refreshed.
Blessings,
Linda

 

[cervus]

Thinking of you and Karl. I hope the night is alright and that he's stronger tomorrow. He might just be having a hard night because of the mucus. I hope that's the case. Yasmin.

 

[Mrs C]

I am sorry to hear your PALS is having these issues. Hopefully, it will not be an issue by morning. We had a tough 5 days or so with mucous, but between 4 daily doses of mucinex and 3-4 of glycopyrrolate, we got it under control. He still sometimes has one light bout of mucous a day, but it is very manageable with the suction machine. I push these meds daily...I refer to them as nonnegotiable drugs. He needs to stay ahead of the mucous and that is the bottom line, and the only way to do that is regular dosing. Period! Our ALS clinic told us about the mucinex, and doc prescribed the glyco (saliva pill). Good luck!

 

[Mrs C]

PS: we alsomdo have a hot steam vaporizer in which we have running all the time. When he starts to feel the mucus, I put a towel over his head and the vaporizer, so he inhales the hot steam to loosen the mucus up. It works often.

 

[Mick n Ang]

Hi ReneeM
This has also become a daily issue for us lately, we have the cough assist and in conjunction with vibration on the lungs which the chest physios have taught me this helps, but we do have days where it lurks there for hours at a time with no relief for him, so we know what you are going through. hugs Ang xx

 

[HelenL]

ReneeM, thinking of you and Karl, hoping that it's just another glitch in the road for you guys and nothing more serious.

 

[momap53]

Hope your morning is better Renee and that Karl is more comfortable.

 

[caldona]

Does he have a Bipap machine if not make sure he gets a Bipap ST model if you stop breathing it pushes air in every 12 seconds and Medicare pays for this we just got one I had the reg. Bipap machine I have had it for ten months so the company just gave that one to me so I would have a backup.

 

[LizT]

Do you guys to any breathing treatments? If not, maybe speak to his dr to see if you can add this to what you are already doing. it should help thin out the mucous so its easier to get up and suction out. Hope today is better for ya'll

 

[rachelg]

Sorry to hear what a tough time you are having.

Along with Mucodyn, Glycopporate and suctioning when Mark is particularly "glued" up he uses a home nebuliser machine with Ventolin solution which seems to break down the mucus and help his breathing. Also plenty of fluids.

Rach

 

[ReneeM]

Thank you eyveryone for your thoughts. Karl is better today. The 2 doses of Robinul helped with mucus attack and a couple of doses of morphine and ativan to help him sleep.

He was tired but more himself this morning.

One more crises averted....I'll take more time however it comes!

 

[mysticunicorn66]

Sorry for what you have had to deal with. It helps to know that you are not alone in this battle. I have been through this with my sister and father-in-law. I (and I am sure others who are dealing with this) stand shoulder to shoulder with you during this battle. I have been praying for you and Karl, as I pray for the others who still battle with ALS, and those who have lost loved ones to this awful disease.

 

[druithleigh]

My sweet Karl struggled all day with 1st nausea then severe bout of mucus and is having trouble breathing. Never had these symptoms before. Had to give 2 doses of Robinul just to stop the mucus and morphine and adavant. He went to sleep at 9:30 pm.. he just said he was so tired.

Nurse practitioner is due out tomorrow at noon but she did say that with his quick progression she was afraid he would progress into the later stages at a very rapid rate once they started.

Going to be a long night... checking in on him every hour. Saying my prayers that he will be with us for just a little more time... things are moving far too fast...

Reglan is excellent for nausea and it would be a good idea to ask your physician about a portable suction device to help with mucus removal. Also, it wouldn't be a bad idea to get a referral for a respiratory therapist in order to be assessed for a BiPAP machine (if he doesn't already have one). My thoughts, hope, and prayers go out to you and your husband.