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Hate to do this... a long mom update

807 views 50 replies 44 participants last post by  jakeysmom 
#1 ·
ok... firstly all I can say is BLEH! This thing has gotten so complicated, I honestly don't know whether to feel hopeful or despair anymore.

Things that are wrong:

Mitral Valve: repaired by mayo, slight leak when she left mayo clinic, now moderate to severe leak which they can't do anything about (can't reopen her up this soon after open heart surgery)

Rhythm: Left and right ventricle are beating at opposite rhythms... "most inefficient heartbeat I've seen" (cardiologist)... possible solution: biventricular valve pacemaker... they tried putting in the "easy no intubation" way last week but failed. They will do it the "hard" way (going through from her side instead of on top where the current pacemaker is) and put mom under for it on Wednesday (they hope). 33% chance she will show significant improvement, 33% chance of very slight improvement, 33% no change whatsoever

Fluid buildup: She's on a lot of lasix (spelling?) to draw off the fluid building up that her heart can't process fast enough... this led her to loose too much last week and her blood pressure went down to 50! (ugg!).. they put in a chest tube to draw off the fluid around the lungs.

Lung problems: Mom has SOME radiation damage from her cancer treatment in the 70s (not as bad as the heart but it has damage that is affecting it's ability to work properly).. but worse than that... and forgive me for the lack of techical terms... after they drew off the fluid around her lungs, her lungs started to touch the chest wall (is that what it's called?) so now she can't breathe (lungs can't expand) very well. I'm really not sure what they are doing about this other than giving it time to correct itself? :-\

She's worse off than she was last week. Last week she could get up out of her chair and hug someone when they came in the door, she could walk down the hall and sit in the little area near the windows... now she can't walk the four feet to go to the bathroom. Last week she would have had me stay with her for hours on end if I could in the hospital room... yesterday after an hour she told us to leave cause she needed rest. She says that compared to this... stage 3 breast cancer (and treatment) was "a cakewalk."

I'm worried... I'm upset. I'm stressed. I honestly feel like we are getting to the point where hope is running thin. I'm losing my faith that the doctors CAN get things back on track. I'm starting to feel like maybe there are just too many things wrong.. they can't fix one problem without causing another.. or if they do fix one thing, it won't be the improvement we are looking for.. the other problems keep dragging her further and further down. Mom has a hard uphill battle and she's losing strength fast to be able to do it. Hell I am losing my own strength to be able to support and help her.

This is rough... I think the thing that is bothering me most is seeing her without that spark in her (something she's never lost in all she's been through) and the uncertainty about what they can do about some of these problems (valve/lung).

I'm scared.
 
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#4 ·
Lindsay, I am so sorry about all of this. Please know that my thoughts and prayers are with you and your family. I wish I were closer and could provide you more support than this thread, please continue to use us as your sounding board. I have to believe in miracles, and am praying that one comes true for you. Hugs to you.
 
G
#5 ·
Lindsay-
I am so very sorry. I wish that there was something that all of us could do. Please know that I will keep you and your mom close in my thoughts and prayers today and for as long as needed.

Take care-
Joann
 
#6 ·
Lindsay, I'm not quite sure what to say. I sit here reading this with tears in my eyes. :'(
As our friend Nance says, by your side my friend.
 
#7 ·
(((((((((hugs)))))))))))
I'm keeping you guys in my prayers.
dweck said:
(((Hugs))) Linds. #1 - You're not alone in this; we're here for you. #2 - Keep in mind that the road to recovery is often two steps forward, one step back. Prayers for you and Mom that the docs will get this all under control quickly and start progressing her again.... :)
This is so true. I'll be praying for strength for you guys and guidance for the doctors.
Take care of yourself.
 
#17 ·
bacatherine said:
Is there any way she can go back to Mayo?
I'm sure there's "a way" but I don't think she wants to or that it's recommended. The surgery she needs is something that the surgeons do all the time (unlike her last surgery where mayo had a large advantage in # of surgeries performed) and I think she'd rather be closer to home, closer to all the people who can visit her everyday... and it's better for Tom (my little brother).

Oh and as for the two steps forward, one step back... the problem is that lately we've been going one step forward, two steps back... mom even titled a blog entry "two steps back"
 
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