A sad update on my dad

[NolaJen]

I posted a few weeks ago. My dad has been in the ICU since 12/26. His perm-cath was infected and he had pneumonia. Sadly, they also found that he has a volvulus, which is a kink in his colon, often caused by constipation/immobility, so a secondary issue to his disease. The fix for the kink is major surgery, which he is obviously not a candidate for.

He has been intubated twice, the plan if to extubate him on Saturday and get him back on his home trilogy. At that point they will determine if he can make it home with hospice, or if we will do palliative care in the hospital.

He is having lots of issues with mucous plugs, it's so strange b/c he could be fine one minute and literally in respiratory crisis the next.

He also has a blood clot, but that's the least of our concerns, really.

I'm just heartbroken. My emotions are all over the place. Sometimes I feel like I can't continue like this, sometimes I feel overwhelming sadness for him (I can't imagine how scared he must be), and other moments I am just punched in the gut with grief.

I have a great support system. I wish I could hug each and every one of you, PALS and CALS. Although my dad has a 'diagnosis' of CIDP, the disease has had the same devastating effects.

No one should have to go through this, it's devastating.

 

[cheerleader]

Bola Jen, don't know if this is helpful but- my hubby told our neighbor that he was NOT afraid to die, but was afraid of what lie ahead in this disease. Your father might not be as frightened as you think. Prayers for you all.

 

[Nuts]

NolaJen, I'm so sorry the journey has become so complicated. I wish we could hug you!

 

[Tokahfang]

I'm sorry. :/ I am glad you feel free to come here for support.

 

[nebrhahe53]

I would agree that I much more fearful of what it to become of me while I am alive than I am of dying

 

[JimInVA]

I'm thinking of you, NolaJen!

I'm quite familiar with CIDP which has many similar symptoms and challenges as ALS. I know this is a hard time for you, your Dad and for all others involved. It is good that he's getting round the clock attention and care. I hope that they are able to quickly isolate and remedy each of the issues he's having to deal with. Warm hugs are being sent your way...

Jim

 

[skipper66]

Sending you a hug NolaJen!

 

[ECpara]

So sad for you NolaJen. (((((((((Hugs)))))))))

 

[lgelb]

Jen,

I'm so sorry. It's normal to feel feel sad, angry, resigned all at once -- he does, too-- but it is feeling your touch and hearing your voice that will help your dad pass in peace, and not be scared, whether at home or in the hospital. You will draw strength from each other, I know.

 

[Barbie]

Dang Jen, what a hard time he is having. I am so sorry your family is going thru this awfulness right now. I hope he will be able to come home soon and get hospice in to help him. being at the hospital always makes everything worse. hugs to you.

 

[Momhasit]

Jen, I feel your pain.
Just so you know You are not alone.
Lots of strength to you!
<3

 

[jfirman]

warm hugs and prayers. Strength to you and your father!