Sunday, March 13, 2011

Help Me Lord, For Your Mercy is Great!

I spent the last week feeling sorry for myself and for my kids.  Monday I went in for another epidural shot in my neck to relieve the pain.  I am due for yet another neck surgery in May.  The last part of the fusion is pushing against my spinal chord at the base of my neck.  I saw the MRI and it looked horrible.  It scares me actually.  The pain is really bad in my neck, shoulders arms and fingers.  Sometimes my fingers don't work the way I want.  I am losing feeling in them.  It is difficult to type.  My arms do not have strength all of the time.  Because it is inconsistent, I drop things and cooking is very painful and difficult.  I feel like I am worse than I was before the other surgeries.  Not only is my neck bad, but my shoulders are an absolute mess.  The tendons are frayed and I wake up every night with my shoulder out of socket.  It is really bad when both shoulders are out because then I cannot get out of bed!  To extend my arm out for any length of time is almost impossible.  Cleaning is hard and laundry makes me cry.  I AM A MESS!

Currently I am applying for disability.  I am doing this so that if Chuck needs to change jobs, hopefully I will have health insurance in the gap.  I do not know if I will ever be insured by another health company again.  To think about it makes me panic, so I am not going to dwell on it, but just complete the paperwork.  I am only in my 40s and I am not sure that I will ever be physically able to return to work again.  What is going on? 
This is not the way it was supposed to be.  When Chuck and I got married the plan was that I would stay home with the kids until the last one was in 1st grade, then I would return to teaching.  I received my Master's degree right before having Wizzy.  Our finances would improve and I would have the same days off as the kids.  Because of not only my physical problems, but my kid's limitations, that dream has gone away.  I have to grieve this dream because I had it so long.  It is hard to think that  I am no longer a viable worker.  My nephew, that claims he is an atheist, said that basically I am a drain on society and should not share in the resources of the economy.  He is young and and idiot, but it cuts to the heart of what people think.  Why should your tax dollars support me?  Why should you work hard and I don't? 

I have to redefine what it means to be viable.  I have to restructure my dream.  I have just been surviving for so long that I have forgotten to dream.  What is my dream of the future?  Why had God put me and my family through all of this?  I know there is a purpose, but what is it?  Am I ready to understand or are there more trails and heartaches?  Where do I go from here?  How long will Chuck be able to take the burden of taking care of all of us and work?  How many surgeries will I have to endure?  How will I be able to take care of the kids?  When do I accept help and when am I accepting too much help?  There is not a rule book for this or a "How to Accept Being Useless in 5 Easy Steps." 

I don't process pain normally.  It takes over my thoughts and my spirit.  I had a blissful 3 hours when the medicine used to relax me for the shot took away pain that I did not realize I even had. Not that I want to take drugs like that all of the time, but man it was amazing!  I did not hurt anywhere for the first time since I could remember.  This feeling made it all the more difficult to deal with the next few days.  As soon as the medicine wore off I went into a spinal headache.  The pain knocked me back.  I could not concentrate or even walk straight.  It took at least 3 days for me to begin to recover.  A spinal headache happens when too much cerebral spinal fluid is in the system and it pushes against the brain.  It is horrible!

On Thursday, I was beginning to recover.  Erica had hurt her ankle the day before just getting out of bed.  The ankle was swollen and for a second day in a row, she wanted to go to school in her "stinking wheelchair."  She HATES her chair, but she could not put any pressure on her ankle.  She has broken her ankle at least 4 times before and she would walk on it for days.  She even would jump off of the x-ray table.  This time was different.  She was in a lot of pain.  So I called her orthopedic surgeon about it.  This was the second day and it was not getting better.  They could not see her, but sent her to the fracture clinic.  The fracture clinic is a group of orthopedic surgeons that sees a bunch of kids that might have breaks in the bones.  These doctors do not understand EDS and it can be a long nightmare of an experience. 

I was preparing to leave to get Erica to the doctor when Elizabeth told me about how she was feeling. Elizabeth feel at the conference she attended in Pittsburgh because she did not take all of her heart meds.  She received a concussion.  We took her into the doctor earlier in the week because of a constant headache and they told us to call back if she felt worse in the head, dizzy or nausea.  When she got home from school she felt all of those things.  I was going to leave CJ and Elizabeth alone just for a little until Chuck could get home. I called the school and talked to the nurse. She did not know about the concussion. She told me to talk to her doctor. I finally talked to the doctor and they told me to bring her into the ER for a CT scan of her head. Well I was already in the car trying to get Erica to the fracture clinic.

I called Chuck and told him that he had to take Elizabeth to the ER in Liberty. He stopped and got dinner for them. Elizabeth refused to eat. By the time she got to the ER she had a fever.

The doctors in the fracture clinic said that Erica at the very least had a broken ankle on her growth plate and probably damage to her tendons. This is her 5th ankle fracture. So she got fitted for another cast. She was crying because she knows that the cast means that she will need to use her wheelchair. She went to the spinal surgeon last week and her back continues to get worse and this was before she broke her ankle. Any change in the gait makes the pain even worse. He has warned us in the past that her mid back is so loose that she could eventually not walk because of it. He had already suggested an increase in her pain meds because of the back pain.

Anyway, she was really upset. I was driving back from downtown and talking with Chuck. He had just gotten to Liberty Children's. So I met him there and switched kids. Because of my upcoming neck surgery and constant shoulder dislocations, it makes it very painful to load and unload her wheelchair.

The ER had just evaluated her quickly her so I got her registered. It was pretty busy but eventually she was brought back. She looked terrible. It was obvious now that she had a fever, which did not follow the concussion symptoms.

We got back and talked to the doctor. I had to explain the recent diagnosis of the subluxation of her C1-2 to 70-80% but because she does not have other symptoms the decision was made not to do the fusion surgery. We also had to explain her condition that is actually worse than POTS and the hit to the head along with the EDS and other fun stuff related to it.

Anyway, she started to make calls, but we agreed that the fever did not fit the concussion. She decided to do a strep test while she was waiting to hear back from some of the other doctors about the CT. Because she had just had the rotational CTA with dye to see if her vertebral arteries were occluded when she turned her neck which was the reason she is not having the surgery, they did not want to expose her to more radiation.

When the doctor came in and said that she had strep we all let out a scream! I have never been so happy to hear that my kids was positive for anything!  After 7 straight hours in the hospital, we were finally on our way home.  Mind you, I am still in extreme pain and can barely move.

Soooo yesterday I took Erica into the doctor for a strep test and she was positive.  Now I am feeling like I have strep as well.  I will go in on Monday before I have to take Erica in for an heart echo. 

Okay, enough complaining.  Tomorrow I will hopefully feel better.  I know that God is right here and His sufficiency is boundless.  I ask for faith to understand that His timing is perfect and He will make me whole and healed in the way He sees fit.  It might not be the way I planned or expected, but He is so much more than me and knows what I need before I even ask for it.  Help me Lord, for your mercy is great!

Sunday, March 6, 2011

Glory Be to God!!!!

Elizabeth will not need to go through the C1-C2 fusion surgery, right now.  I say right now, and this will sound ridiculous, the only thing wrong with her is that her head comes off her body at least 70%.  The problem is the doctors do not know what is considered normal.  We cannot risk surgery based only on that test.  The risk would be worth it if she was turning her neck and the arteries to her brain were being pinched.  She went through a series of tests to determine if this indeed was happening.  According to the tests, she is okay.  She is not having numbness and tingling or severe headaches or neck pain.  She is also not having any changes in her brain or spinal tissue. Given all of these factors as well as the fact that she is still falling and this could be deadly while recovering from the fusion surgery, we all decided that she is okay for right now.

That CTA that was created for her turned out to be a huge blessing.  We did not need to guess or try to figure out on the operating table if the arteries were being compromised.  Praise God!

While preparing for the CTA, the decision was made to take her off of some of the medications that she takes to control her blood pressure and heart rhythm.  She crashed pretty hard.  She had difficulty walking, paying attention and was very dizzy.  This gave us additional information that the neck is not the culprit in the blacking out episodes.

Right now she will not need to wear her neck brace which is such a blessing for Elizabeth.  This is the part that I cannot explain to the doctors.  Before we went into the appointment, Chuck, Elizabeth and I all decided to place the final decision in God's hands.  We asked God to speak through Dr. Durrani.  God is the one to be praised here.  It was our willingness to let go of control of the situation and allow God to direct our path.

This is not to say that she will never need the surgery.  She will be followed by Dr. Durrani and if and when she does develop any of the symptoms mention above, we will know the source and know what to do for her at that time. Until then, we will trust that God knows what He is doing.  It is a leap of faith to know that your daughter's head is not attached very well and be okay with that.  We cannot live in fear.

Currently she is attending a conference on leadership.  She fell last night.  I am staying the same hotel and the directors of the conference called me right away.  I took her to her room and discovered that she had missed a total of 4 of her scheduled medications.  I think we found our smoking gun!  I was able to give her her medication, some salty snacks and lots of water.  She felt so bad when she realized that her fall was due to the lack of medicine. 

After about 2 hours, she was able to return to the conference and even participate in a variety show that she had organized!  Her classmates cheered when she sang a song in Japanese.

God is so good!