I'm lying in bed at a Fairfield Inn about twenty minutes outside Cincinnati. It was the cheapest Marriott Friends and Family rate I could get. It is only good for two nights, and then it goes up to the regular rate because apparently this "high season" in Cincy. The room is clean, but the hotel is in an industrial area and feels icky overall. I wonder how many hotel rooms we have stayed in since all this began. I wonder how many times we've driven to this southern Ohio city. This is my third trip in the last month, and I feel completely flat. The roads between home and here are particularly hard on my body. I am exhausted and in pain before the tough stuff even starts.
I've needed to blog since my last overnight trip here to see the pectus surgeon. Many of you have asked for details, and I apologize for letting the emails and facebook messages slip unanswered. It's been very difficult for me to mentally accept another surgery may be on the horizon. This week is technically considered pre-surgery testing, but I consider it a decision week too. When I met with Dr. Garcia he was definitely looking at my scan and my body related to my symptoms as a candidate for the Nuss procedure. Of all the things he could have focused on he wanted me to leave with two key thoughts. He wanted me to be sure of how painful this surgery is and how long the recovery takes, requiring a mother of young children to have a steady support system who is committed to her healing over the first three to six months. I smiled calmly. I have walked a similar road twice now. I have never been fully prepared for the pain, but I have endured, and I have never been able to plan the support, but it has somehow been there, and my children and husband have made it through.
If you have a stomach for fascinating surgical procedures you can view a video of the Nuss procedure here. I am still not able to make it all the way through. Maybe you can watch and tell me how it ends! My instability adds a complicated layer to any kind of structural surgery. Dr. Garcia has experience with my connective tissue disorder and pectus excavatum. His recommendation would be to leave the aluminum bar(s) in place for five to seven years following the surgery. After looking at my chest CT he explained there are two kinds of pectus excavatum. The majority of photos you will bring up on the internet are deep holes in the sternum seen mostly in adolescent males. My pectus is fairly deep, but it is also an overgrowth of the breast bone, so it is actually causing a wider area of pressure on my heart and lungs.
I have six appointments here beginning tomorrow and ending Friday afternoon. They include physical therapy and occupational therapy with specialists who understand EDS. They will splint my right knee and my wrist and fingers as well as make an informative plan for a local therapist to help them understand my specific limitations and needs. I will have a cardiac MRI and meet with a cardiologist on Wednesday. I will undergo metal allergy testing during the week to determine if the bar used in the procedure would cause any reactions. I will have a pulmonary test to understand the percentage of lung capacity I am functioning with during activity. All of this information will help Dr. Garcia make the best decision about moving forward with the pectus repair.
Danica is here with Dan and I now. She has an appointment tomorrow morning with a special urologist who understands her ongoing bladder/bowel issues and how they may relate to her Chiari. We will finally go over the results of her urodynamics testing and make a plan. My dad will meet Dan half way in Columbus Tuesday afternoon so Danica does not have to stay here all week. These trips are part adventure and part anxiety for her. I am nervous about letting her go back, but I know it is best.
Delaney is in West Virginia with my mom for a fun weekend at my sister's house. We won't see her again until Friday evening. I miss her like crazy. I try to remember all the times we have left her over the years, but I can't do that either. It is so much a part of all of our lives it almost seems normal, but it's not really. It just hurts.
I don't have any bold declaration of faith today. I have a few really great "love" stories to tell. I know I will have some down time this week to try and do them justice. We are still carried by these continuing expressions of care and concern. I marvel anyone is still able to stay and watch much less participate in such active ways to be God's hands to us. If you are reading this now, would you please pray? I know I've asked so many times, but we need lifted up this week. We need higher ground and a firm foundation for the next storm.
Our hope remains.
praying faithfullly as always
ReplyDelete!!! <3
"For we do not want you to be unaware, brothers, of the affliction we experienced in Asia.
ReplyDeleteFor we were so utterly burdened beyond our strength that we despaired of life itself.
Indeed, we felt that we had received the sentence of death.
But that was to make us rely not on ourselves but on God who raises the dead."
(2 Corinthians 1:8-9 ESV)
Monica, I will pray. I have been quiet lately, but you should know that does not mean I have forgotten you. You and your family are always in my prayers.
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