Christmas Eve, I was suppose to be at the Children's Hospital helping put meals on each floor for families and staff. Jeremy started getting cloudy urine on Friday afternoon, he threw up all over the bed including my phone, we irrigated with the Gentymcian and left it in overnight but by Saturday he was going down hill. Dr. Cyrus wanted us to be seen so off to the St. Francis Pediatric ER for what I thought would be the day but to my surprise there was no waiting and within an hour we were home. I dropped off what I thought was a pretty common antibiotic only to go back to find they didn't have it, I was frustrated. I then found out that there wasn't a pharmacy in Sapulpa that had it, so I called CVS and they didn't have it. I called the ER doctor and she communicated with Wal-mart pharmacy to get something they had. I was finally home, gave Jeremy his first dose, got my Christmas food ready, Santa cookies made and the kitchen cleaned. I put on my PJ's, sit down to relax and snuggle with Jeremy when threw up the entire day all over me. I felt so bad for him, put him in the bathtub to let him play and that seemed to help him. Christmas day was pretty much the same, no eating, vomiting but by afternoon he was feeling better with no fever and enjoyed the day. He even started to play with his new jeep he had gotten for Christmas. I was grateful he rebounded so fast and think the gentymician flush helped. I then continued my annual tradition of going shopping to see what new Christmas decorations I could find to add for next year so we got lights and 2 new inflatables. I then boxed up everything and put away for next decorations. We enjoyed a nice, relaxing, week with no agenda or schedule.
OK, a recap of 2011 which started like we have in so many years, spending the night at Granny and Papa, playing games, eating, laughing and eating our black eye peas on New Year's day. We then left behind our lives in Oklahoma on a very bitter cold, beautiful sunny skies, a dusting of snow and headed to our temporary home. We had such a nice, sunny beautiful drive until we got closer to our destination and hit a snow storm, we arrived to Columbia, Missouri to approximately 4 inches of snow already on the ground. This was to close the chapter of scoliosis in our life. Jeremy had surgery to place the halo, be put in traction and Dr. Dan started adding 2 pounds of weight a day. Jeremy got up to 17 pounds of weights and became known as the Master of Disaster of the 5th floor where he would use the walker and drag the weights around. If you didn't know Jeremy you would because he carried around a ball and would throw it to anyone who looked in his direction, even the Executive Director, Dr. Fete. Jeremy gained quit a gathering of some awesome people who love him, I gained new friends and allies. Dr. Dan brought his children up to introduce to Jeremy, then his wonderful medical assistant, Holly brought her daughters up one day to play with Jeremy. Then Friday, January 28, we were woke up bright and early by our resident Dr. Nelle who marked Jeremy up for his surgery, this was to get some correction, place rods and fuse Jeremy's spine. I waited by myself until after 1pm, when the reason I found Dr. Dan, Alethea, brought me lunch and waited with me. I called down about 2:30pm to check and Candy informed me things were not going good, the monitors had went off, he had lost 3 units of blood and they were closing now. That still didn't prepare me for the conversation I was to soon be having with Dr. Dan. It took him forever to get into the consultation room and the look on his face and the 1st words he spoke to me is something I will never forget, "this is not what I wanted for Jeremy". Dr. Dan had always communicated to me that he wanted Jeremy to be mobile, didn't want to take that away from him so I knew where we were headed. Dr. Dan explained to me, that he lost signals that never returned, got the screws placed but because Jeremy was loosing blood he had to stop surgery because 3 units which was lot for a little guy. I was then returned to the PICU to wait on Jeremy which seemed to take forever, I was greeted by Lauren, social worker and Corrine, Child life, who heard surgery had not gone well and they stayed with me til Jeremy returned. I watched a herd of very caring, compassionate nurses, a Pediatric Anesthesiologist, Dr. Burney stabilize my son. I then had to leave the room so he could put in a central line to draw blood, and give him the medicine he would require. I stood over my son's bed in total fear, he couldn't maintain his blood pressure and looked so weak and I was afraid he wasn't going to survive. Then when he started to recover, my thoughts were what is it going to be like when we get home and how unfair this is. We got several visits from our favorite resident Dr. D. Robertson who had assisted Dr. Dan with his first spine surgery, I gained the respect of another new resident Dr. Alan Anz. We came home after 31 days with the thought that Jeremy would require rods and fusion within just a matter of months and also with a Foley Cather because Jeremy was unable to urinate on his own. We held out hope, prayers that all would regain. We added a Pediatric Urologist to our staff of doctors and started the process of intermittent straight cathing Jeremy 3 times a day and were introduced to UTI's. We renewed a relationship with our Pediatric Neurologist with increase of seizures, botox and weak muscles. Jeremy qualified for home health nurse which is a HUGE blessing. We returned back to see Dr. Dan and all our friends 4 times to be checked with no surgery date set or put in motion and last visit his spine is doing some fusing on it's own.
Jeremy is amazing, you can't look at him and wonder is there a GOD, because all you can see is GOD in him. Jeremy is writing his own book, always has, always will. I even had a vision when Jeremy was younger of him standing before a crowd and saying, "this is what the medical world said I would do, but this is what GOD did". That unwraps before my eyes daily. We came home to a boy who couldn't even sit unsupported to a boy who is now sitting, crawls faster than most walk, is standing, will cruise around things, uses a walker on occasion. Jeremy started Middle School and has became Mr. Personality, eats like a horse, off his ADHD medicine, contagious laugh, just keeps my life full and there is no doubt in my mind Jeremy will walk again. A boy in the eyes of a world who shouldn't regain but a boy in the imagine of GOD who is doing exactly as GOD plans.
"Blessings: by Laura Story, if you haven't heard it search the words and the song that became the theme song for my life, because what if the healing comes through tears, what if the trials of this life are blessings in disguise. I can only say on a Monday Morning drive to work that was the only words I heard from that entire song. I was coming to a point of acceptance and GOD helped me to realize the healing was coming, it was coming through tears and it was my healing. I had spent countless nights crying out to GOD, why, why, why. I reached a milestone and received my 20 year service award with OG&E gained 5 weeks of vacation and 10 years with the Oklahoma Family Network. We also added another Regional coordinator in my region to take the North part of my area. I am coordinator our 4th year of Tulsa Sibshops. I did in August lost my dear Aunt Betty, my mom's sister who I have such fond memories of as a child and her children.
So, to the year 2012, we don't know what you are bringing but HELLO and WELCOME.........
Here are a few pictures....
|Me and the grinch|
|J standing for therapy|
|J being goofy|
|J with cousin, Miranda|
|My new jeep...|
|Me and Miranda, new year's eve|
|Mom and J, Happy New years|
|Yes, he wrote on his face with blue chalk|