have my first post-op visit today

[Guest guest]

Hello everyone,

I have not felt well for several days now, and there are well over 120 emails in my inbox--far more than I can possibly read and respond to in one session. I use my laptop from my hospital bed--both are Godsends! I had to reschedule the regular follow up appts. for me and both boys with Dr. Grubb this week, as there was just no possible way for me to travel that far without literally jeopardizing my life. Since Dr. Grubb stays soooo backed up, the first available appt. for all 3 of us at once was June 2005!!! I took it, naturally, as seeing him for our POTS is not optional. It did require a personal "ok" from Dr. Grubb in order for him to give us refills of our meds as we run out, but when my situation was fully explained in detail to him (my neck is now fused at 5 vertebrae with several discs completely removed plus bone graft from my right hip----and I am still in a soft cervical collar 24-7 until further notice, and still receiving PT and skilled nursing visits at home), Dr. Grubb gave his nurse, Alisha, the "ok". Let's now just pray that she documented that vital information in each of our files! I go to my orthopedic surgeon in Dallas for my first post-op visit today. I dread the 160 mile round trip and physical ordeal. I know that won't be easy and will take a LOT out of me. I see my pain management specialist in Dallas next Tuesday, so hopefully that will give me time to rest and recover from my trip/ordeal today. I need to see my pain management dr. badly, as my left elbow which I dislocated a couple of months ago so severely needs another cortisone shot. I am waking up in tears due to pain in my elbow. I know for certain that the dislocation, caused by nothing more than me simply reaching to rearrange the pillows behind my head, did some severe damage to the soft connective tissue surrounding my elbow. It is just not healing, and is even still discolored and painful to the touch and painful to move.

I want to sincerely thank each and every friend and "family member of choice" who has sent me cards, plants, gifts, phone calls, and most of all, prayers. Without prayers and good wishes, I would not have come through this nearly as well off and I know that. I treasure each and every one of you who has sent cards, healing thoughts, prayers, etc. my way. I am still having difficulty swallowing, and that may not change. My orthopedic surgeon, after seeing and touching my esophagus with his eyes and hands, attributes my difficulties with that particular issue to laxity of the connective tissue secondary to my Ehlers-Danlos Syndrome and my esophagus being traumatized and stretched out by the surgical procedure itself. It was unavoidable in order to put the breathing tube in during surgery and for him to hold my esophagus to the side with a surgical instrument for hours at a time during two cervical surgeries now to let him gain access to my vertebrae. He simply advises me to have LOTS of water/liquid on hand to swallow meds and food, and to not be alone when I take meds or eat if at all possible for safety's sake. I still require assistance with dressing, toileting, bathing, etc.....just about everything, really. It will just be a long recuperation and I will have to be patient and cooperative with drs' orders. Again, THANK YOU one and all for everything. It means so very much to know that I am loved and thought of and prayed for by so many dear people. It keeps me going, really. I smile each time I get a get well card, phone call, etc. It just makes my day, honestly. It helps me not to feel so isolated from the outside world, you know? May God richly bless and keep each and every one of you.

Oh, by the way, I know I'm slow to keep up and remember things...and not just in emails and posts, either, but in everything.....but I've just recently realized that there is another in Texas besides me on the Ehlers-Danlos Syndrome lists.

Love,

~LoneStarRose~ (~~)