Tuesday, January 28, 2014

Having A Tough Time

I haven't been posting many words, because I haven't had much time, or the thought process to be able to compose anything that would even sound logical.  Nothing about this hospital stay has been easy to explain.  Last night I started trying to type it out and realized it was going to be an extremely long post, so instead of that, I'm going to just hit the highlights of the past couple of weeks.

On Tuesday, January 14th, he went to the OR to get the axillary balloon pump, that was supposed to allow him some mobility.  He said it was brutal and the pain was excruciating.  Nausea and vomiting.

Wednesday, January 15th, pump not working right, couldn't be fixed bedside, back to the OR to try to advance it and there was a clot at the graft site and they weren't able to advance it, or replace it.  Pump was removed and Swan placed back in his neck, on the left side.  Nausea and vomiting.

Friday, January 17th, my middle Son's 37th birthday and like last year we are at the hospital.  Sorry RJ.

Saturday, January 18th, hematology told him he is homozygous (two mutated copies) for MTHFR gene.

Sunday, January 19th, still nauseous and vomiting... has been since surgery.

Monday, January 20th, frustrated, still suffering with nausea and vomiting and ended up telling off one of the doctors that talked to him about a medication addition, which Michael didn't want scheduled, only as needed.  Doctor walked out of room, straight to the computer and scheduled it anyway.  When his nurse told him what the doctor had done, he had the nurse send him right back in and let them have it.  They agreed to do the medication as needed, which was what Michael had agreed to.  The medication was to knock him out all night and he didn't want more drugs than he was already taking.

Tuesday, January 21st, the arterial line in his wrist wasn't working right and they tried to fix it.  Still not working, so they inserted one higher on his arm.  That one stopped working as well, so they ended up taking it out.

Wednesday, January 22nd, still nauseous, vomiting and only wanting to sleep.

Friday, January 24th, running a low-grade fever.  They are concerned about possible infection.  He did manage to get up, but got sick.  They are planning to try him on Marinol (synthetic marijuana) to see if they can get him able to eat.  Removed PICC line that had just been replaced and removed foley. (potential sites of infection)

Saturday, January 25th, to the Cath Lab to remove Swan on left side of neck and place another one on the right side.  Also had to take care of a blockage.  First night on Marinol.  Had a horrible night, violent leg jerking, hand movements and hallucinations.  Medications are a huge issue, especially since he hasn't been able to eat.

Sunday, January 26th, traumatized from episode last night, crying and barely able to explain how it made him feel.  He thought he was dying.

Monday, January 27th, FINALLY HAD A DECENT DAY, THANK GOD!  Medications have been tweaked, Marinol discontinued, he was able to eat some food and keep it down and WAS ABLE TO WALK.  Violent leg jerking and hand motions have stopped.

I apologize for not updating and for this being long.  Thank you to everyone for your kind thoughts, prayers and emails.  We are hoping he can get more comfortable, regain some strength and put back on some weight, since we have no way of knowing how long it could take before he gets a heart.

Here is another photo from an amazing blogger that is fighting her own battle with cancer and is also a caregiver for her mother.  God bless you, Vicky.  You are in our thoughts and prayers!


41 comments:

#1Nana said...

My heart goes out to you and your family for all you have endured. I'm glad to hear that he has finally started to feel better. Hang in there!

Jacquelineand.... said...

My heart is with you, Michael, and your family; I wish I could be there to give you a hug and lighten your load a bit. I definitely empathise with Michael on the violent movements, certain medications trigger the same reaction for me and it is both painful and frightening.
If he's having appetite issues you might see if his doctors think Megace ES would help him, it isn't synthetic marijuana and both my father and the Great Scot used it successfully and without any side effects. It may not be suitable but it can't hurt to ask...

Deborah said...

Please never apologize to us.

All of my thoughts are with you always dear friend.

Nothing but love love love.

Betty Manousos said...

my heart goes out to you, Michael and your family. always~
i am happy to hear that Michael has finally started to feel better. keeping you, Michael and the whole family in my thoughts. sending prayers your way!
lots of love
(((hugs)))

Gigi said...

Oh sweetie - sending hugs and prayers your way.

mama .bonnie said...

My heart aches for you and your son. This post made me cry for both of you, him for all the pain he is experiencing, and you, having to witness it all and not being able to do anything about it. I will continue to keep the both of you in my thoughts and prayers.

Hartwood Roses said...

You owe us nothing and we are infinitely grateful that you choose to share your life with us. Sending you and Michael and your whole family love and prayers for strength. There is no way that most of us can possibly imagine what you are going through.

Nellie said...

What an ordeal for Michael and the family! Prayers still with you during this time!

Ami said...

I wish there were something that was EASY for all of you right now. I hope that you and yours know how much people care. So much to go through and so unfair. Sending good thoughts.

Jen Forbes said...

Prayers, prayers and more prayers. Take care dear lady.

TexWisGirl said...

i have been wondering - think of michael often. you remain so upbeat in your comments left all around blogland. i just cannot imagine the hell his body and mind have been through already. i hope he has turned a corner into more comfort and less pain, no infections or nausea! bless him! be strong!

NCmountainwoman said...

Oh dear. It's been even worse than I imagined. Still praying here, not only for a heart, but for a smoother course before. And, of course for you and the family.

Bossy Betty said...

Sweetie. No need to ever apologize. You are doing what you need to do and doing it with more grace than I ever could. Thinking of you all. Sending you strength and love.

George said...

I'm sorry to hear what Michael (and the rest of you) have been going through. I hope his good day yesterday is just the first of many, many more. Michael and your family need to be your first priority, so there is no need to apologize. Just know that all of you are in our thoughts and prayers.

Betsy Adams said...

This one made me cry --like others have done. I am so very very sorry for what Michael is going through. Lots and lots of prayers for him --and for you, the Mom who is having to watch all of this pain from your SON.

God Bless.
Hugs,
Betsy

Sally said...

God bless Michael for all he's going through; I pray daily for him and for you, MsA. You're stronger than you think, and go Michael for telling the doctor off.

xoxo

Furry Bottoms said...

Oh my goodness, what an ordeal. I am so sorry for Michael, and for the family. I was getting madder as the days went by as you described... why couldn't they find the right thing, the right meds for him already?! I am glad they finally got there! Praying it will stay there now.

Karen said...

I wish I could say something that would actually make a different here. I look forward to the day when Michael can walk out of there a new man with a new heart and a new life, you too. Sending love and prayers... xo

Margaret (Peggy or Peg too) said...

Cora I am so sorry.
i've been whining about my 102 fever and chills and this flu. it put is all in perspective.

I'm sorry you are living through all this. i hope Michael gets to receive a heart soon. I can't wait for those photos.

Chatty Crone said...

I have to tell you - there are no words to make you feel better. It all sounds so tough - hard - and overwhelming. No reason why. I will promise you and Micheal my continued prayer. And don't give up. Love and hugs, Sandie

Nancy said...

I just popped over from your friend Witless. Oh golly your hubby is going through so much. I am sure you and family are too. I am sending good vibes and your all in my prayers.

WordsPoeticallyWorth said...

Sorry for your troubles. Good luck for the future!

Thank you. Love love, Andrew. Bye.

Pat Tillett said...

No need to apologize! You've got your priorities in order and I respect you for that. You are some strong folks....

Pat Tillett said...
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Pat Tillett said...
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Linda said...

Oh, don't apologize! You have your hands full! I'm so sorry to hear that Michael has had such a hard time!

Sending prayers to both of you.

Vicki Lane said...

I am so sorry for all of you but happy to know there was finally some improvement. May things go better.

Rawknrobyn.blogspot.com said...

Oh MsA, having you spell it out like this really brings us closer to the agonies of this journey, moment by moment. That God for a good day. May it be the start of many more.

Love and prayers, always,

xoRobyn

Vicky said...

I'm overwhelmed with just one of those days- but adding them all up- fraught with so many complications and days on end of misery- is too much. I'm so sorry you all are having to go through SO MUCH. Its truly beyond comprehension and all I can do is pray for some relief, a measure of comfort that holds, a respite from it all somehow. I pray some measure of peace befalls all of you!!

lotta joy said...

Haven't they realized by now that Mike reacts more to medicine than the average person, and everything they give him should be at half-dose to begin with????

They are medicating him as if he's got the normal body of someone his age and it's not true! jesus.

Barbara Shallue said...

No apologies necessary, for goodness sake. Michael and all of you are in my prayers. I'm so glad he's doing better and hope he can continue eating so his body is ready for that heart!! Hugs to you!!

Kathleen's Blog said...

I wish I could something to help---i am at a loss for words and all I can say is I think of you all every day and if my positive thoughts can help--it'll be alright. Hsng in there, my friend!!!

Help! Mama Remote... said...

prayers, prayers and more prayers

chana meddin said...

OH MY GOODNESS, Ms. A!!! One good day, may it give birth to twin good days and may they continue to enable Michael to recover from the horrific traumas he has been experiencing! You are all in my prayers and I think we all wish we could hold hands in one large circle and Michael's heart would magically heal itself! I cannot even IMAGINE the agony of what you've done a beautiful job of describing, thank you for taking the time to go into details, it helps us understand and feel closer to you all and love to your friend with cancer, God Bless Us Every One :)

Katherines Corner said...

oh my goodness I am so very sorry for his misery and for your worry and for all that his body must be enduring, His strength is amazing.I pray, I pray every day that things will get better for him. Hugs

Nancy Claeys said...

Hoping and praying for some relief for Michael today and every day. Hugs.

Lynn Proctor said...

i am praying for a much better year for you and michael <3

Ms. G said...

Still here Hon. if not online, in my thoughts Every Day.

ancient one said...

Praying with y'all... Love to you and Michael...

Cindy @ Dwellings-The Heart of Your Home said...

Heartbreaking, I cannot imagine going through this much less watching my child go through it. Love and prayers to you all...
xo,
Cindy

Saraheinä said...

I don't know what to say... Wishing easier days for Michael and you all. You are in my prayes.