Wednesday, July 7, 2010

Smile!

It has been a long time since I have updated and a lot of stuff has happened during that time.



Hunter had a couple rough months. He had a return of all of his symptoms and a few new ones. During this time Hunter was seen by two neurosurgeons here in Charleston and he had many appointments with his primary doctor. Hunter was in the most pain I have ever seen him in, he was missing so much school that he was put on the home-bound program. He stopped going outside to play with the other boys in the neighborhood. I even had neighbors asking me why Hunter was not outside anymore. He went from being outside everyday on his bike to not having any interest in doing much of anything at all. During this time he also went through a major growth spurt. He went from looking like a boy to a young man in 6 weeks or so. Hunter is only 11 years old. My son Chase is 16 and his friends say Hunter looks the same age as him now. Hunter's symptoms have calmed down quite a bit now that he is through the growth spurt. He is back outside running around with the neighborhood kids and just being a kid himself. He is not sitting around complaining of his back pain. I hope for him this lasts a very long time.


As for me I am still having as my brother put it last week "the worst luck of anyone I know". This new round of problems started in May. I went for an appointment with Dr. Francomano in Baltimore. I had a great appointment with her and as always she gave me some great advice on how to manage my symptoms as well as my boys. During this appointment we talked about my children and her thoughts on if I should have any other children. She thought it would be best for me if I did not. She said neurologically for me it would not be a good idea. This was May 21st and our first discussion ever on the subject, I met her for the first time over 3 years ago.

A week or so after I got home from Baltimore I had a positive pregnancy test. I thought of this as some kind of miracle. We did nothing to change the way we handle family planning. I thought sometimes God makes these choices for us. I was worried about my health and the health of this baby but was very excited. I called my family doctor right away and quickly got off all of my medicine except the beta-blocker which I even decreased that by half. My family doctor, pain management doctor and neurologist were all excited for me. With my medical history I was sent to a high-risk OB. During my first ultrasound it seemed like something might be wrong. Here comes the part of me learning more than I ever wanted to know about failing pregnancies and truly one of the greatest losses of my life.

I am a mother of 3 children and every time I found out I was pregnant it ended in me having a baby, so I did not think this would be any different. I could see this future baby, and immediately started doing everything to take care of myself. Even though Dr. Francomano did not recommend that I get pregnant, we did talk about some things a woman with EDS should do during pregnancy like megadosing folic acid @4mg per day instead of 0.4mg. I was worried about the medicine so I wanted off quickly, I got off Opana in 10 days, and with my neurologists approval I stopped my Topamax the same day. I was so worried these medications could harm the baby but my doctors said not to worry about that. The pain management doctor said I had like a 1 in a billion chance of the medicines I was taking to do any harm. So I was convinced I would have a happy, healthy baby. I even pictured this as my little girl.

During that first OB appointment the pregnancy did not measure as far along as I should of been. The doctor was concerned I had something called a blighted ovum but said my dates might be off so even though at the time he was suspecting a failed pregnancy we went ahead and discussed my birth plan. This is one of the main reasons I am sharing this with my readers. Over the years since I was diagnosed I have been asked by women how the births of my boys were handled. I was not diagnosed with my medical conditions until after I had my boys, so even though after my second pregnancy I started to show some neurological problems my pregnancies were handled the same as any healthy woman. This one would be very different.

The OB doctor said he would not want me to labor at all, would not want me to push at all, would not want me to have an epidural, I was thinking "how do we get this baby out then?" He would want me to be put under general anesthesia and while I was in a deep sleep they would do a c-section. He was also very concerned about my cranial-cervical instability so I would need to be awake when I was intubated. Not anyone's ideal birth plan. I was scared of this but the idea of losing the pregnancy frightened me even more.

I went back the following week for another ultrasound and their was not much change from the week before on my measurements but the OB (a different OB) wanted to check my hormone levels to see if my levels were at the level to support a normal pregnancy. I got a call the next day that things looked good. My HCG was high, so they tested another hormone the progesterone and these levels looked good also. The doctor said the levels offered some hope so I was scheduled for another ultrasound 1 week later. The next appointment was when I got the worst news possible, something I had never even heard of.

The doctor at this appointment (different again) came in telling me she thought I had a molar pregnancy and I needed to go to be admitted in the hospital now! She then started talking about how I need an echo-cardiogram because of my medical history before I was scheduled for surgery. Then she started talking about chemotherapy. I was so confused. I said "Do I have cancer?" She told me a molar pregnancy can develop like a cancer and that the pregnancy needs to be terminated now! She said it can spread to my lungs and brain so those would need to be scanned. Thankfully when she called to the hospital they said I could schedule my appointment for the echo the next day and come in at a scheduled time to be admitted in the hospital. This gave me some time to come home and research molar pregnancies and what to expect. All of this was the worst news I felt like I had ever received but I did still have that echo scheduled and "when it rains it pours" for me so I was not done getting bad news.

After the echo I went to pre-op in the hospital and was told again by a doctor I had never met that I had an enlarged aortic root. I remembered from previous echos that it was normal. That again was devastating news. When I have heard of EDS'ers that have died it has been from aortic rupture, so I was left thinking is this a death sentence for me?

This has all been so emotionally devastating. I was put under general anesthesia for the "procedure" I remember them waking me up saying its all over. I remember just thinking the baby died and I was crying, I was all alone crying, then a nurse came in saying they were giving me something to calm me down. I wanted to feel, to feel the loss in that moment but even that was quickly taken away. I woke up later with Allen standing over me.

I just don't understand sometimes why I have to have such "bad luck" all of these things to make me stronger. I was thinking of this the other day thinking about how the strongest people have to carry the most weight. I just hope I don't crumble under all of it. So for now I will continue to be that "tough girl" my dad has always said I am and know I will get through this. And as always during the tough times and the tears I will get through it by putting on a smile.



Smile Lyrics
A tribute to Charlie Chaplin taken from the stage version of "Smile")
Words Written by John Turner and Geoffrey Parsons.
Music Composed by Charles Chaplin.
Produced by David Foster and Michael Jackson.
Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky
You'll get by...
If you smile
With your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile if you'll just...
Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you'll just...
Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky
You'll get by...
If you smile
Through your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile
If you'll just Smile...
That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you'll just Smile

2 comments:

Anonymous said...

Laurie...I am soooooo sorry...please feel free to call if u want or need to talk.....I wish I was closer to u so I could be there for u.

I like the Smile song...one of Micheal Jacksons favorites....

I am sending good vibes ~~~ and prayers for u and Hunter.
<3 u
Kathy

About Tonja said...

Thinking of you! Here is a HUG! And thoughts of blessings to come!
Tonja