I really need to update this site more and I apologize for not posting as much as I should. For those on Facebook, you can like his page at Stryder’s Story. I tend to update there more often because it’s easier from my phone. This post is going to be LOOOONNNNGGGG because I don’t update as much as I need to.
On Friday, I got an email from The Chiari Institute that they want to move forward with the surgery! The last couple of weeks Stryder has been wearing a collar to see if any additional side affects show or any disappear.
He loves wearing it, but the heat makes it almost unbearable, especially because he can’t regulate his heat as it is. I did breakdown and bought him a cooling vest that he can wear, espeically on these really hot days that are going above 90 degrees.
This is what I wrote to the Dr after our trial period:[block_quote cite=’- Mom’] Good Morning (or afternoon in your case) Dr. Rekate!
I am following up on Stryder’s “experiment” with the collar. I kept a diary for all 4 weeks and this is the summary.I’m not sure how much more detail you want, so I’ll start vague and if you want more, I will give that to you. 🙂
Day 1 I started journaling and found that almost the entire day he had some kind of pain. It started in his feet and legs and then also headaches every day. The headaches didn’t seem to last too long, but I have a feeling a lot might have been from sneezing because he sneezes all the time. They would vary in places, but sometimes on the back and also on the top mostly. He only had one all day headache. his back hurt every day during the first two weeks, but again, not all day, mostly after walking and sometimes just because. His ribs hurt a few times and his hands and feet would have tingling sensations. Stryder also had a lot of chest pains, but I believe that was from eating. His recent swallow test showed that things would stick there after trying to come up. He would take naps every day for hours and sometimes just going to bed for the night at 5 or 6. Every day for the first two weeks was the same pains in the same places just different days.
The day we got the collar, we decided to walk in the mall before we left. (He got the collar at Shriners and it is a 3 hour drive from our tiny town.) Stryder was extremely thirsty so I got him water from a vending machine. Immediately he was having a small “panic” attack because he was afraid he wouldn’t be able to drink with the collar. When he drinks without it, he has to stand and he stretches his neck way out. He takes meds at school (only a liquid one mixed with water) and the aid mentioned that he can’t sit and drink it and has to stretch out completely. I didn’t notice this until we went on a field trip and he said he had to get out of the stroller to drink.
So, we are in front of this vending machine going to begin his first trial and I told him to just try it with the collar on. He LOVED it and said that it felt good. We went on to walk the mall and his gait was a lot different. I can’t say it was better but different. He is very hypermobile and floppy and trips a lot, but there was not any tripping in the mall, nor since. I was also checking to see if he got tired like he usually does and asks to be carried or put into a stroller. He did not and did not complain the entire time. On the drive home, he didn’t sleep which is extremely rare because it’s a 3+ hour drive and he sleeps even on ten minute drives. He has not had a nap the entire time he has been wearing the collar, again VERY unusual. The pains he has have been almost non-existent. He had one day where his ribs hurt and another the back of his leg and another where his elbow hurt, but that was after laying on the ground playing on his iPad. We have a 4′ deep pool and he wears the collar while swimming and has no problems with it.
I asked Stryder if wearing the collar helps, hurts or is the same as not wearing it and he says “helps” every time. He can’t tell me why, but he does put it on every day in the morning, on his own. The one thing he does hate is that it is so hot and being that it’s been in the high 90’s here, he sweats quite a bit even without it.
That’s the snapshot of what we saw. If you would like more detail, let me know.
I look forward to hearing from you,
Angela and Stryder Doescher [/block_quote]
I am amazed at the transformation. Some things I didn’t know were contributing to his “condition” and others were much more drastic than I ever could imagine. Just this morning Stryder forgot to put on his collar first thing and ate some cottage cheese and began choking and vomiting in the trash can. I reminded him to put the collar on and everything was great again. I am so nervous about the surgery, but Dr. Rekate reassured us that things will be better for Stryder.[pull_quote align=’right’] It is a big operation but our successes have been great and it has changed many lives of our patients. [/pull_quote]
Stryder seems so happy and so “Normal” lately. It’s been amazing and I only hope surgery will relieve some of the pain he has had.
Dr. Rekate’s secretary called Friday and said that he has an opening October 10th for surgery, but she was going to see if he could do it September 10th instead, so we should know tomorrow (I hope) if we get the September date. It will be right after school starts, but that may be a good thing. Maybe some of his new friends will send him cards. I want the day to come fast because all I do now is worry about it and think of all the bad things that may happen while in surgery, but also remembering that God has this and Stryder will be fine, actually more than fine, he will be better than he ever has been.
I sent in Stryder’s imaging and other information for a second opinion only to give to his neurologist and also this Dr specializes in epilepsy related surgery and will tell us if the surgery will help his seizures. I got his EEG’s on disks and had to convert them into a PDF format and am amazed at how many seizures he has at night and how many times he holds his breath and all the other things that come with epilepsy. It’s heartbreaking knowing he is struggling silently so much.
I hope and pray that we can get these seizures under control. I remember the neurologist telling me specifically on this EEG that it looked “good for Stryder”. I have come to an understanding that we may never get rid of all the seizures and that’s a hard thing to cope with, too. The Dr mentioned SUDEP ( Sudden Unexplained Death in Epilepsy) for the first time at his last appointment a few weeks ago. Do we give him more medication and make him more sleepy, slow and incoherent during the day, or do we deal with the seizures that may cause death during sleep, but then again, they may not? It’s hard place to be in.
I am thankful for Keebler though. Last night he was pre-alerting, non stop and so I gave Stryder extra meds that helped him cope through the night.
Finally, on to the cost of this surgery. Stryder has two types of insurance. One is United Healthcare and thankfully TCI does take that insurance. He is also on disability, but that insurance does not work out of state and TCI does not accept that type. Someone posted their detailed report from the hospital of the cost of a fusion. Stryder is getting a fusion and decompression and some other work, plus anything else they may find when they open his brain up.
This does not include any of the Dr fees, food, lodging or other types of surgery. It’s going to cost a lot. Oh and we just got a bill from the MRI he had in Maryland.
Yes, you see that right- $4044.00 for an MRI that insurance does NOT cover. But I will do what I need to for my child and will pay monthly for the rest of my life if I have too. The good news is that there have been many fundraisers and people raising money and others praying. We are so grateful for everything and everyone and it means so much knowing that we have some of it covered already. I wish I could thank everyone individually, but there are so many. I love seeing signs around town like this:
I have to deal with the fact that my son needs (must have) surgery and a lot of what gets me through the days with a smile is knowing that everyone is routing for him and wanting to help. Even if it’s change in a jar, a prayer, or a smile- I’m thankful for all of it!