I had a choice

Well the pulmonary doc doesn't think my setback is from my lungs or the trigger for my worsening MG, but has given me an inhaler just in case to try with activity.
The neuro nurse was alarmed and I was given the choice of hospital and plasmapharesis or weekly IVIG for 4 weeks.  I opted for the IVIG.  My activity has been ramped down to "Chair exercises".  She also is testing for a few other autoimmune things
My infusion nurse will come on Friday, then next week Friday she will come to the cottage.  Doesn't everyone take their nurse with them on vacation?
I have to see the cardiologist, as the lung doc was sure that we need to look at that 7 second pause I had in ICU.  I am still sure it was because they were giving me lopressor (sp?) rather than the atenolol I usually take for my prolonged QT (weird harmless heart thing.)  So the week I return, I will be spending Monday, Tuesday, and Wednesday in Milwaukee doing cardiac and pulmonary tricks for the docs.
I came home exhausted.  I had to get up at 4 am and drive myself.  Trudge all over the hospital complex with my bipap (Should have requested a transport).  I was so stubborn about the transport that the nurse practitioner walked me (and carried my things) to lab.  I did notice that twice a stumbled but did not fall due to not picking my foot up all of the way.  Whats up with that?
On a positive note, Leo is working nights, so he went to bed at 5 pm.  I crawled on the couch and by 6 I was out cold.  I slept until 5:30 this am with just one nature call during the night.  Nearly 12 hours! 
My latest pics of my babies.  Note the awful haircut I got for Gray last week.  His mom hasn't quite forgiven me, but I could not see his eyes.

Replies

deleted_user
deleted_user

It looks like they have a plan for you and that is a goos thing. We all want to be so active and this disease does not caver active people.
Barbel
Barbel

I know how you feel about a transport. Do what is best for you. My husband has wheeled me to the lab when I have blood tests, except for one time that I walked. It just isn\'t worth it, bless your heart.

The baby\'s hair will grow again and be back in his eyes before you know it. I am sure he is enjoying the clear view!

I hope you have a good day.
GreenMarie
GreenMarie

Debbie,

A few thoughts...firstly... The babies are both beautiful!
I am glad you got home safely albeit exhausted and were able to get some catch up sleep. I know the next day of appts. looms large so do take transport if it is offered as it saves needed energy.

I am glad they are looking at so many things so nothing gets overlooked.
Great they will come to the cottage for your txs! That is a blessing.

Will hope for a solution for better days and more of what I call oooooomph! Hugs, Maire
deleted_user
deleted_user

Sending you love and support from the other side of Wisconsin, know that if anything, the fresh air here in God\'s Country will offer you some late summer healing :)
Love,
Tricia
larissam
larissam

So glad to hear that a treatment plan is in place. Wishing you a speedy recovery.
Graysons mommy will think back on this cut fondly the day that he decides to cut his own hair! He looks precious no matter what.
hugs, Larissa ;)
deleted_user
deleted_user

I used to think these things had to be simple to manage but we can get really sick and sick with more than one thing. I think a out you often and hope for that day when things get figured out for your better!
Bamboolilly
Bamboolilly

I wish you strength for all the tests that are upcoming and quick ANSWERS, the precious gift we all want and wait for.
Be well,
Bamboolilly
Bamboolilly

P.s. ivig really helped me after thymectomy. Hope it works magic for you too :)
Be well,
newmugg
newmugg

Hoping the IVIG does the trick Debbie. So glad you could set us a treatment at your cottage. That is perfect, lol.
Hopefully after your next \"vacation\" in Milwaukee\" , you have some answers (fingers crossed that nothing else is added on your plate)
Let us know and have a wonderful time at the cottage
Hugs
DebbieF777
DebbieF777

Thanks, my dear ones, for always being there for me. This past week has been a bit stressful as I was feeling miserable. Yesterday afternoon seemed better and this morning I feel pretty darn good, but not pushing. Four minute timer for activities today. Leo is rolling his eyes and saying, \"There is no way you will behave yourself at the cottage.\" I told him it is alright as I have no intention of dropping over until after.
jeanniea
jeanniea

Keeping you in my thoughts and prayers Deb.
lindsayamaral
lindsayamaral

I hope the IVIG does its magic. Your babies are beautiful! God bless your retreat at the cottage.
~Marina