It is so strange to see my sons face on a t-shirt design. It is absolutely surreal to be dealing with the "why" it is there.
We are knee deep in fundraiser plans and the bad thing about all of this is, life doesn't stop just because your life is in crisis. There is much to do to plan this fundraiser and I spent the better part of this day going to appointments and doing things for David that simply go along with the life of a special needs child. Today he had his pre-surgery physical therapy appointment. I went in there with plans that we would likely get him fitted for new orthotics (leg braces) but instead she just made sure that his current orthotics will keep him going until surgery. Why? Because after surgery, everything from his orthotics to his wheelchair to the kind of walker he uses will have to be changed. I had no idea.
In March, David will be having spine surgery to correct the curving of his spine which is common in kids with cerebral palsy. The curvature can happen in the upper spine, lower spine or mid spine. If uncorrected, as they enter adulthood, the curving can cause a moving and even crushing of organs like the heart and lungs.
In some kids and especially nonCP kids, the curvature can be fixed non-surgically with a back brace. David's CP however, made that impossible although we did try. So now we do surgery. David's curvature is in his lower spine and the surgery will either be a fusing of the vertebrae, a metal rod placement or both. The procedure will likely be extended a few inches above the curving area to get the best outcome.
You know when you have a chronically ill child with things such as cerebral palsy, seizure disorders, etc, there are three kinds of moms. You have the kind of mom who literally spends every waking hour on WebMD and chronic illness sites trying to soak up every ounce of knowledge and information she can on her child's illness/disease. These parents live, breathe and sleep their child's condition, constantly on the look out for the worst case scenario or at the very least, very sure that if something becomes an issue, they will catch it early.
Then you have the moms who just completely go with the flow and never even ask a question, check out a web page or check out anything in reference to their child's illness. They simply can't handle the what ifs, so it is just easier not to worry until they have a reason. This is kind of an ostrich with his head in the sand scenario and this becomes a huge issue when something does happen and the family is not prepared for that particular outcome. Ignorance is a poor excuse when you have a sick child.
Finally, you have moms like me. I am a cross between researcher mom and head in the sand mom. I ask a lot of questions of the physicians and medical professionals in Davids life, but I seldom research his illnesses simply because it would literally make me paranoid and insanely crazy. I know myself too way too well to put any of us through that. Besides, most of the information out there is so generalized and if I am going to get information, I want it to be from professionals who know my son, have worked with my son and who can give me information pertaining to my son, not a generalization of the CP population. If I need the blanks filled in, then on rare occasions I will do the minutest of research but only on VERY rare occasions.
So today, I decided to get some info on his surgery from his physical therapist. My reasoning here is that she gets the kids in the aftermath of the surgery. She has a baseline idea of recovery time and what is entailed in the recovery. After talking with her, with all that is currently going on in our lives, I almost wished I hadn't. But....when talking to the right people....knowledge is power.
David previously has had two hip surgeries, which have put his hips back in their sockets and helped to reduce some of the tightness that CP kids often get in their muscles. These surgeries have been instrumental in helping him to get to the point in his life where he can get around pretty well on his walker. He still has to go long distances with his wheelchair, but he can make 1,000 or more steps per day. He also has Botox injections every 4 months to help the tightness in his hamstrings and help him to build muscle where there was originally nothing. He has fought through two really tough hip surgeries to get to this point. With one of those surgeries he almost died within hours of having the surgery. The recoveries have been long and difficult but each time his quality of life has improved and throughout both surgeries and recoveries he has maintained his smile and his joy for life.
Now this surgery. In the last few months I have noticed that David's right hip seems to be having trouble when he walks with his walker. This is due to his spine alignment. It throws his hip out badly and from what I understand, this causes a lot of pain. You would never know he is in pain as he walks as quickly as he can excitedly greeting anyone in his path, but there is no way (according to the doctor) that he is not in pain. It breaks my heart to think with all he has endured in his short 17 years that he might be in constant pain. This spine surgery should help his hip and the pain. Post surgery, his spine will be straight as a string and it will allow him no rotation in the upper body. This new straightness will help pull his hip in and when he walks, his body will be more in alignment. It will also affect his feet, knees and lower legs.
The surgery itself, depending on whether they do fusion, rod or both can last from 4-8 hours. This terrifies me because David and anesthesia don't get along well. It does awful things to his body when he is under for more than an hour or so. So, that in and of itself makes me cringe right down to my toes. Then following surgery and post op, he will likely be in PICU (pediatric intensive care) for 3-5 days. He will then be moved to the general pediatric floor where he can stay anywhere from 5-7 days. It wasn't until today that I fully realized that I could be moved into Davids hospital room for almost two weeks...and NO....I won't be leaving his side.
Then comes the fun part where we have to figure out how to get him and his fragile healing spine home. It terrifies me to think of having to get him in my (non handicap accessible) van, getting him home and then getting him out again.
Once home David will have another 6-8 weeks of recovery. Slowly he will be given the okay to first sit up, then sit in a chair and then move to his stander where we will have to stretch everything from his shoulders to his feet. Once we are there, then he will start water physical therapy. Water therapy is amazing stuff and he will have a PT in the water helping to strengthen him and getting him back to normal. From there he will go back to regular PT where he will work out on the Total Gym, ride his bike and get back into walking with his walker again. It is a long process which will entail a lot of pain, effort and fortitude and it is definitely not for the weak of spirit. Did I mention this all makes me cringe?
March 1st, is the day we see David's orthopedic surgeon and get the plans underway for this surgery. Within a couple of days of the appointment, if not the day of, we should have a date set for the surgery and my brain will be mush until he is completely recovered.
Perhaps this whole house thing has been a blessing in the fact that it has gone a long way in keeping me focused on things other than David's surgery, although today, the surgery issue came back and hit me full force. It is scary and I wish that it was the only thing in my world currently that I had to worry about. Unfortunately, it is not and I can't help but be just a little angry thinking that I hope those who put us in this situation never have to go through what they are putting us through right now.
In the midst of all of this upcoming surgery, the Save David's Home effort remains in affect. Plans for a fundraiser on March 10th are well underway. We are still selling two designs of t-shirts. One design is on the top of this page and we still have our YouCaring, Carson Bank Donation account and our Paypal account working to get enough money to save David's Home.
The greatest miracle for me would be if David's home was safe and sound and worry free before this surgery so that nothing would distract from his surgery and recovery. It is my greatest prayer and again today, I ask you all to pray like crazy, to share my blogs, the Save David's Home facebook page, t-shirt page and donation pages. I know I'm asking a lot, but trust me, I will pay it forward for the rest of my life.
So until tomorrow....happy Tuesday!
#savedavidshome
#fightfordavid
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