Day 26

Happy Valentines Day everyone. I got up this morning and made my Elijah heart shaped cinnamon toast, and to make it extra special I added sprinkles. Well that was a mistake because it made it to crunchy for him so I ended up eating it and now I am paying big time. I don't have time to be so sick right now because I have to get everything ready for my trip. Everything Elijah will need, including clothes and plenty of entertainment. My clothes and medications and boy let me tell you that is a whole bunch. Between my IV nutrition bags, IV meds, pole and pump, plus all the syringes, alcohol wipes, gloves, flushes, hep locks... I am sure there is more but you get the point. I don't have time to waste my day laying on this stupid couch in pain or stuck in the bathroom. Elijah is so sweet he wants me to help him make valentines for everyone so I have to help him no matter how I feel. Every holiday and everyone's birthday and even sometimes just because it is Thursday he want to put together an elaborate party. I am afraid he got that trait from me. Pray that I can pull myself together long enough to do the things I must and not allow myself to do the things I shouldn't. I think the thing I am most nervous about for my surgery is the fact that the scar from my sternum to my belly button is pretty much healed and I know this surgeon is good but it is kind of a big deal to be split open that much. The surgeon that implanted the device moved my diaphragm which I only found out about because at my post-op I asked him why every time my stomach hurt my left shoulder hurt and he very nonchalantly said, "Oh, that's because I moved your diaphragm. That was in 2010 and my sweet Clint thought he was going to lose me, let me tell you if was bad and I knew it was going to be. I wasn't so sure I would survive either. Both Noah and Hope had plans to go to summer camp so in their luggage I put a letter for every day. Writing those letters were so hard, but I wanted them to know how much I loved them and if anything did happen to me that they would be just fine because I raised them to be strong and they would have their daddy. I wrote Elijah letters too, but the one I was really worried about was my love, my life, my Clint. Of course I wrote him a very long letter but I knew he would be there for the kids though with Elijah all I could think about was that Joshua Kaddison song, All He Wants Is Momma's Arms. By the way thanks Kevin for that CD I never gave back, it is one of my favorites. But I knew the kids would be there for each other and Clint would be there for them. Though I knew the kids would be there for Clint, he would really have nobody to lean on. He would be strong for the kids but fall apart on the inside. The reason is because we are each others best friend, we fall more in love with each other every passing day. There is no one we would rather be with than each other, and I was so worried for him that there would be no one to give him the comfort he needed. The first month after my surgery was extremely hard on everyone. But then I got better bit by bit. I could hold down small amounts of food. At one point I could even hold down a full meal. I was so close to being me again. Valentines day 2011, I had a root canal so those two things made me know the day my nerves quit responding to the pacer. Dr. Abell's office knew it would probably happen to me because my biopsy showed missing neurons and even though they knew, they didn't bother to tell me. So I had it adjusted and felt it shock the living day lights out of me every 5 seconds with no results. I had it turned off and let my stomach rest, not putting anything down for 3 days in the hospital with IV fluids, Zofran, and Phenergan. That was the protocol but after that I still could not hold down anything a sip of water sent me into severe dry heaving spells. After a week the doctors unhooked my IV and sent me home. Yea, that is what medical service is around here. Two weeks later I was back in the hospital, this time we all thought I was going to die. That is when I went on IV nutrition and fought tooth and nail to get to the Mayo Clinic. My insurance finally approved it but for some reason the Hospitalist sent me to the one in Arizona. There they ran tests and told me everything I already knew and sent me home. Home to my beloved grandfather's funeral. Thank God I have a PCP who knew so little about gastroparesis but cared enough to learn and stick with me through the whole process right down to taking care of my weekly nutrition needs. I am sure I have written it in here before but though the insurance approved me going to Mayo, they did not pay sticking us with a $13,000 bill. Now it is time to go back to New Orleans and have this useless pacer removed. This surgery won't fix my problems other than the pain the pacer itself causes. It has flipped over twice and that was excruciating.
Time for the moment of truth. I have to survive this, I have too much to live for.