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I had the heart procedure last Monday. When I woke up, I could not move my neck. The doctor had told us that he was only going to make one incision but ended up making three and one of them was on my neck. I am waiting on a an MRI right now to see just how much damage the Doctor did on my neck. This whole thing has been a disaster. On Friday I started feeling some horrible pains at one of the incision sites, my leg was bruising, it was weird. The pain got so bad I ended up in the ER and then was admitted to the hospital with internal bleeding from one of the incision sites. In all of this the Doctor was no where to be found. We called his office over and over again for an entire week and only got one call back from him and all that came out of his mouth was a bunch of lies to cover up his mistakes. When I was in the hospital with internal bleeding, he refused to even come down (his office was one floor up from where I was) to check on me or even discharge me. THANK GOD for my regular cardiologist. When we called her and told her what was going on, she was there within the hour and took care of everything. She was floored at what that Doctor had done to me.
I am on a heart monitor now, probably for the rest of the year. I am starting a new heart medication because when that messed up Doctor went in to fix the problem, he actually never fixed the problem. He cut me up, made a mess of my body and never fixed the issue that he was suppose to go in and fix. And I am going back to the Neurosurgeon. I may end up having that neck surgery after all.
On top of all of this, the hospital that I was in violated my HIPA rights not once, not twice but four times. I signed the confidentiality agreement to remain anonymous in the hospital and they still gave my medical information and such to any random person that asked. The hospital could care less. For almost a week after my surgery, we had no clue what was done and why they cut me up so much because after my surgery, instead of calling my husband like instructed to do, they went out into the waiting room, called my name and whomever answered the nurse gave them all of the information on my procedure including after care instructions. When ever we asked (we = me the patient and my husband) for after care instructions or why I was cut so much or even what was done we were given one of two answers, “I don’t know” or “I can’t give you that information”.
I feel so empty and helpless right now.

I went and met with the Neurosurgeon yesterday to talk about the when, where and how of the spinal surgery. It was a stressful appointment but was made even more stressful with the fact that we forgot the CD of the MRI that I got when I had it done. My husband drove the hour drive, round trip, to get the CD at our house and arrived just as the Doctor was finishing up telling me the ins and outs of the surgery (and that I would be down for at least 9 weeks!). My husband gave the CD to the Doctor and the Doctor stepped out to look it over.
In the meantime, I cried and told my husband what the Doctor had said.
Minutes passed and the Doctor was back in the exam room to explain to us that he did not think I needed surgery after looking at the MRI pictures. The Neurologist and Radiologist both had exaggerated my condition. Yes, I have pain and numbness in my legs and arms, Yes my spinal cord is compressed, but the Doctor thinks that a few steroid injections in my neck and physical therapy will correct the problem. He wants to see me every few months to monitor my progress and he said that maybe in a few years I may have to have the surgery or it could end up correcting itself and I won’t have to have the surgery ever.
The next thing he said made me laugh. He said he loves to cut, cutting makes him the big bucks so he guesses that I am not going to make him the big bucks right now!
So no surgery on my neck/spine right now! Just heart surgery on Monday.
I was so relieved after that appointment that I came home and went to bed and slept like I have not slept in a long time.
This is the best news! Just one surgery not two!!!!!!!!!

I am getting ready for two surgeries and to be down for the rest of 2011. That means I have a check list a mile long. One thing I can check off my list is Christmas shopping. I have officially finished Christmas shopping! The only Christmas related items that I have left to attend to is to address the Christmas cards (photo’s already taken, photo card already made and order placed!), buy stocking stuffers and get some wrapping paper. I went to Target yesterday to pick up my medications and I figured that I would just grab a few rolls while I was there, then the display of wrapping paper fell over on me and Madelyn and the thought of looking at wrapping paper after that discuses me so, I still need to go back and do that.
My husband’s birthday falls a few days before Christmas and I still need to handle his gift. The problem is that I am making him a gift and I am depending on others for some of the things that go into this heartfelt gift (that I am 200% sure will make my husband cry with tears of joy). It may be late, beyond my control, but it will be worth waiting for. I promise him that it will!
Our guest room has been cleaned, sheets freshly laundered, and is awaiting guests or family members just in case we need overnight help after my surgeries.
My husband and I got our Christmas gift already from my grandmother. A brand new camera. It is amazing. I have been having fun taking pictures of the girls. They are, of course, my greatest masterpiece.

Madelyn

Mia

Mathew and Mia

Ok, one of me... The medications are making me HUGE.

My house is a mess. A complete and utter mess. That will be handled this weekend.

Tonight my husband and I are writing our wills and guardianship papers. Lucky for us, Louisiana will accept a hand written will as legal so it will just take a few pieces of paper and a pen to get it all down. It’s just deciding everything. It is something we have been wanting to do since the birth of our first child but never sat down and actually did it. My impending surgeries and hubby’s chemo, we have a lot of health issues right now between us so we really need to hammer it all out and put it on paper. He see’s it as depressing, I see it as security for our children. Either way, it has to get done. It’s going to be a long night!

I have a stack of books on my bed side table just in case I can actually read while I am down. Just in case. I can dream, can’t I?!?

I’ve cooked about 50 separate meals so that my husband only has to take it out of the freezer, defrost and serve.
I have made detailed lists of the girls schedules, appointments and contact information for everyone in the entire world that he would ever need while I am down.

And I still have tons left to do.
Hopefully I will be able to check in one more time before I go in for surgery….

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My Cardiologist refused to sign off on my spinal surgery until I have heart surgery to correct a new potentially fatal issue. So instead of having surgery on my spine I am having surgery on my heart. Once I recover and all is well, then I can have the surgery on my spine.
Looks like I am going to be out longer than expected.
I’m so overwhelmed.

It all started June 2010. I found out I was pregnant with Madelyn and went through the horrible task of getting off of all of the Class D medication I was taking. It was grueling but I made it through. I started noticing that my left foot was hurting. The pain got worse so I went to a foot doctor and found out I had tendonitis. 3 months in a boot and 2 months of Physical therapy and I was back to my normal self. Or so I thought.
Shortly after I finished PT my foot started going numb and my leg started to hurt. I was almost 6 months pregnant by then so I blew it off. Then slowly the pain moved up my leg. I delivered Madelyn at 36 weeks. Then my right foot started going numb and hurting. The pain slowly moved up my leg. Fast forward 7 months… I had pain and numbness in both feet, both legs and my right hand. I went to see an Orthopedic who quickly diagnosed me with having tendonitis and referred me to a Neurologist for the numbness.
The Nuro immediately sent me to have a series of tests done. Today I got the results back…
I have two growths on my spinal cord at my neck. These growths have pushed the discs in my spine to the left and are a fraction of an inch from paralyzing me from the neck down. If I would have continued to ignore the pain and numbness that I felt and just blew it off as a “side effect of a difficult pregnancy” then eventually I would have become permanently paralyzed.
Where do we go from here…
My Neurologist has set me up with a great Neurosurgeon. We are meeting with both Doctors together to decide when and how they will be surgically going in to correct this issue. In the meantime, I can not lift anything heavier than 10 pounds (my daughter, Madelyn weighs 13 pounds) and I must wear a brace on my neck to keep me from going paralyzed until they can get in to fix the damage.

This comes at the worst time as we were preparing for my husband to undergo chemotherapy.
His chemo has been put on hold for the moment.

I can’t say when I will be back on this blog but I will be back. Please pray for me and my family.

-The Mom Claire

I am sitting here nervous about my Doctors appointment today.
Please wish me luck. Depending on the outcome of today’s tests and tomorrow’s tests I may be having major surgery.