So...we are back. Life is no where near back to normal but we are back and together as a family, which is the best gift that can be given. This surgery was A LOT more intensive and invasive then the last one. The pain has been much worse than last time and I have had to rely on pain pills a way more then I like. And, since there is so much post op pain it is impossible to know if the surgery worked. Dr. S said it will take 4-6 weeks to know for sure. And, that is where I spend a lot of time trying to stay out of the fear. If I could know that I was for sure fixed, then I would not have any trouble getting through the recovery. I'm just so TERRIFIED of having to do this over and over again. The good thing? Dr. S said he will not give up on me. That made me feel hopeful and good. For now, 4-6 weeks with no driving and no lifting over 5 lbs. That is really all I have control over right now. That is it. The rest is not up to me. This is a very hard pill to swallow. The financial uncertainty combined with the fear of continued bad health is really just life altering. I don't know how people do this. The further this goes, the less I identify with the doctor and the more I identify with the patient. I know there are no certainties in life....I could get hit by a bus tomorrow. But, when the illusion of certainties is shattered, it starts to mess with you. I pray A LOT and I am trying really hard to rely on my higher power but that is not always as easy as it sounds (or maybe it is).
Syd is confused and a little scared about what to do with me and Layne just wants me to pick her up. I know that if this ever ends, they won't remember this time and for that I am grateful.
I am also grateful for the amazing friends that we have. When we were still in LA, Rae (one of our online buddies) went way out of her way to pick Mere up at the airport and bring her to the hospital. To top it off, she had a basket full of goodies and a gift card waiting for her. The most amazing thing? She collected money from our online friends to make it happen. These are the things that make you know there is a God and that people are good. What an amazing thing that you can have a connection with people that live miles away and that you have never met in person. Thank you doesn't seem like enough, but it is all I have. So, Thank You!!!!
Tuesday, January 26, 2010
Monday, January 18, 2010
Surgery
Today is the day. Surgery. Again. I talked to Dr. S last night and he says that the old leak is not completely sealed, SO he is going back into the same spot to revise the surgery. For some reason this makes me feel better then if there was a whole other leak. Still surgery, but I feel better. Right now I'm mostly just worried about the what ifs. I have experienced a lot of the what ifs, and frankly, I'm through with what ifs.
The latest what if is contrast dye and seizures. So, it was after the myelogram and Tommie and I were hanging out in the recovery room. That is the last thing I remember. Apparently, I started screaming and thrashing around. I. was. having. a seizure. I wish I had some great way to describe it but it is all so blurry. I do remember seeing Tommie there and knowing that she was with me but I didn't know who she was, or her name, or where I was. She looked scared, I remember that. There were lots of people talking to me. I don't really remember much until I came to in the ICU. That is when I started to get the story from Tommie. Apparently, the contrast dye can cause seizures. It is rare, but it happens, suprise! I guess after a bazillion myelograms you start playing the odds. We spent the night in the ICU with the worlds nicest nurse. The next day, they discharged me back to the hotel to return Monday for surgery. We have spent the weekend just hanging out and waiting.
I'm just so THANKFUL that we had not been discharged and we weren't walking down the hall or the street when the seizure started! There is always something to be thankful for....can you tell I've been with Tommie for a week?
Mere comes in tomorrow and Tommie leaves. I cannot wait to see Meredith!!! But, I'm glad that we did it this way. The girls didn't have a REALLY long time without us and Mere didn't have to see the seizure experience (which, according to Tommie was not a lot of fun).
Can I just say, time in LA crawls? These are the longest days of my life! Mere agreed when she was here and Tommie agrees now. It is strange. The days go on and on and on. It is 7am here, surgery is a noon and we have to be at the hospital at 10. There a million hours between now and then, or at least it seems that way.
Some things I don't want to forget:
--we are staying in a really cute hotel with a great little Italian restaurant. Last night we had the CUTEST waiter from Argentina. He was super yummy, so was the food.
--Tommie saw Barbra Streisand in the elevator at CS hospital. She played it cool, didn't say anything. Wonder if she will be there today?
--There is the sweetest gray bird here named, Shadow. He sings a lot and seems very happy.
I would definately stay at this hotel again!
So, the plan:
Surgery today. Mere come in tomorrow, Tommie leaves. Hopefully, home by Friday, but I really have NO idea.
The latest what if is contrast dye and seizures. So, it was after the myelogram and Tommie and I were hanging out in the recovery room. That is the last thing I remember. Apparently, I started screaming and thrashing around. I. was. having. a seizure. I wish I had some great way to describe it but it is all so blurry. I do remember seeing Tommie there and knowing that she was with me but I didn't know who she was, or her name, or where I was. She looked scared, I remember that. There were lots of people talking to me. I don't really remember much until I came to in the ICU. That is when I started to get the story from Tommie. Apparently, the contrast dye can cause seizures. It is rare, but it happens, suprise! I guess after a bazillion myelograms you start playing the odds. We spent the night in the ICU with the worlds nicest nurse. The next day, they discharged me back to the hotel to return Monday for surgery. We have spent the weekend just hanging out and waiting.
I'm just so THANKFUL that we had not been discharged and we weren't walking down the hall or the street when the seizure started! There is always something to be thankful for....can you tell I've been with Tommie for a week?
Mere comes in tomorrow and Tommie leaves. I cannot wait to see Meredith!!! But, I'm glad that we did it this way. The girls didn't have a REALLY long time without us and Mere didn't have to see the seizure experience (which, according to Tommie was not a lot of fun).
Can I just say, time in LA crawls? These are the longest days of my life! Mere agreed when she was here and Tommie agrees now. It is strange. The days go on and on and on. It is 7am here, surgery is a noon and we have to be at the hospital at 10. There a million hours between now and then, or at least it seems that way.
Some things I don't want to forget:
--we are staying in a really cute hotel with a great little Italian restaurant. Last night we had the CUTEST waiter from Argentina. He was super yummy, so was the food.
--Tommie saw Barbra Streisand in the elevator at CS hospital. She played it cool, didn't say anything. Wonder if she will be there today?
--There is the sweetest gray bird here named, Shadow. He sings a lot and seems very happy.
I would definately stay at this hotel again!
So, the plan:
Surgery today. Mere come in tomorrow, Tommie leaves. Hopefully, home by Friday, but I really have NO idea.
Friday, January 15, 2010
One More Time
Life was good. Ok, life IS still good, just not what I planned. Of course, I am learning that my plans are silly and insignificant and rarely matter. It was last Thursday when the headaches started to become noticeable. I had to lay down at the end of a long day, I was having trouble concentrating on patients, and I just felt yucky. Could it all be in my head? Maybe. At least that is what I was hoping. Well, fast forward to today. Here I am, back in LA getting ready for another myelogram.
Long story short, they are back. I had a full spine MRI yesterday which showed some leakage at the old site. The surgeon said it could be new or it could be post op from my previous surgery. The only way to find out is a myelogram. Luckily, they are going to sedate me this time. Whew! He said that if the myelogram is abnormal, then I get to have surgery again. If it is normal, then maybe another blood patch. So, I find myself in a strange situation.....hoping for an abnormal myelogram and surgery. At least if it is not normal, then he can find the exact spot and fix it. If it is normal, then what? Non specific blood patches and unanswered questions. Can't go there now....not going to.
Tommie is here with me and Mere is still in LR with the girls. We are going one step at a time right now. I will post more as I know it.
Long story short, they are back. I had a full spine MRI yesterday which showed some leakage at the old site. The surgeon said it could be new or it could be post op from my previous surgery. The only way to find out is a myelogram. Luckily, they are going to sedate me this time. Whew! He said that if the myelogram is abnormal, then I get to have surgery again. If it is normal, then maybe another blood patch. So, I find myself in a strange situation.....hoping for an abnormal myelogram and surgery. At least if it is not normal, then he can find the exact spot and fix it. If it is normal, then what? Non specific blood patches and unanswered questions. Can't go there now....not going to.
Tommie is here with me and Mere is still in LR with the girls. We are going one step at a time right now. I will post more as I know it.
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