I live by a saying You never know what strong is in till you dont have anything left but strength. Iam suddenly coming to the end of what I can handle.
Ive been struck by the stress monster and Id like to be released please.
For those of you who do not know my son was born with Spina Bifida with a side order of Tethered Cord Syndrome. Google these things if you dont know what Iam talking about.
Recently my son has been doing worse with his walking. More falling down episodes and just bold clumbsy all the way around, with really bad back pain to the point he cannot sit or lay or walk much at all. Hes in so much pain and crys often. Hes taking strong medication from the doctors to try to help with the pain but to no avail. This is something i had first thought of as JRA flare I thought his legs and knees were getting sore and swollen causing him to faulter so often .Then came the extreme back pain just in the spine. I didnt have to go far to think of what it could possibly be. WHy you ask? We’ve been here before.. It was a long time ago and times were different. He was showing signs in different locations like bladder and kidneys which are key points to look for with tethered cord syndrome. Changes in the bladder and bowels and kidneys along with gait issues…
Since his last surgery of the bladder and kidneys we lost the abillity to see changes in them. They made his bladder no longer a working muscle but more a container for urine with slack muscles that dont work like yours and ours do. No pressure to test anymore with Urodynamics. (special machine and tool for doctors to test pressures in the bladder and test for reflux into the kidneys) So we were too look for changes in gait and issues with his pain. I was in LaLa land with his new diagnosis of JRA that i surely thought it was atributed to that fr sure cause he was ding so well with his other issues SOOO well since the last surgery he was a total changed kid.. we forgot often he had any issues at all at times he was doing so well. Some of it could be accounted at my lack of wanting to SEE tethered cord since he was doing so well, if that makes sense.
I didnt want to see it. I never want to see it again. I hate it and everything it does. So yes Iam sure alot of my not seeing this clearly at the time was due to alot of denile. Opening my eyes now i see what i didnt want to see. Tethered Cord syndrome. Third tether. This scares the pants right off me. Its screaming in my face as my son is in so much pain. miserable poor baby. Nothing i can do can make it better. NOTHING!!!!!
Ive called in the big guns the NEUROSURGEON for appt asap and the soonest we can get in is June 6th, the absolute soonest is then at UCSF! Waiting for the diagnosis is almost pointless ive been here ive seen it before but it has to be said by the docs. Once seen by the docs which is going to be hard hard hard to test for. As i mentioned before in this post weve lost a tool (bladder and kidney pressure testing) to check for TCS weve also lost the MRI ability to see as hes had two major spinal cord surgerys and lipoma removal and relases f the tethered cord that is built up too much scar tissue to show anything but yuck on the MRI. The other tool to check for TCS
This is where the tricky part comes in. We need the right Neuro to see us. One who is keen on looking at signs the body shows and not digital imaging to determine TCS. he or she has to make a decision by looking at my son the way i see him now and make a diagnosis. Once the diagnosis is made were looking at only one option
SURGERY!
A tricky 9 , 11 , 13 hour microsurgery on my sons spinal cord and spine. Not only dangerous but we rick so much of what we have of his mobility. Everytime they go into the spinal cord like that you come out with damage they pray its only a little numbness in areas due to nerve dammage. but you als have a higher risk with paralization from the lesion down. His being lumbar region. So we wouldnt know if he can walk till after surgery, or feel in his legs.
We are talking a very long recovery, long and painful. Two weeks in hospital and a long recovery at home. Now Sully does very well , or has in the past, at speedy hospital recovery for the sheer fact he hates hospitals and will do anything to will himself to get out. So he makes himself well much faster. We often have seen him out in 9 t0 12 days in hospital. Which he strives for walking and moving and getting out of bed when he can to show the doctors hes well enough to go home.
Hospitals arent my fav place either. I get to stay with him bedside and sleep in a chair bed the whole time which is nice. Its going to be hard as it will be three hours away from my family. My husband and daughter all my critters. Trying to get everyone situated for a long hospital stay is hard to do. getting the work all dne for him t come home and getting everyone on the same page takes time and carefull consideration. Somedoctors dont give yu much time and some give you too much time to think and worry about surgery. I cant tell you which is better.. to be told asap or t be told we have to wait a month or two.
What stresses me out about this possible surgery is it will be at a hospital i do not know with a doctor i do not know or trust well like my last team i had with Kaiser. I loved and trusted all my specialists at kaiser with my sons life. Thats a hard thing to give up easy. Giving my sons life up to a doctor you dont know well. Being so far from home again for a long time is going to be hard. having everyone going back and forth on the roads to see us. The stress it puts on the family is great. Sister misses and loves her bro. Daddy panics cause he cant be there full time. Mommy panics cause she is there full time with no mental help from the hubby. worrying about everyones state of mind going thru this process. AHHHHH its hell..
All the time knowing my boy will be in dire pain. Iam glad to know that 90 percent of the hospital stay he doesnt remember thanks to good drugs in the iv. He doesnt stress hard about staying cause he knows he will forget it all in the long run which is a hell of a thing to do. What a strong little man he is.
SO anyhow this is just a few of my thoughts and sharing for the day. I cant do much more then be strong. and stay strong right now. and all i want to do is curl up and cry like a mommy can..
