Let's Get On With It!

Yesterday Toby had the full MRI of his brain and spine.  We were admitted to the new hospital pulmonary floor.

Arrival at 8 a.m.
Scan at 11:15 a.m.
No food after midnight
No drink after 7 a.m.

Actual scan wasn't until 2:15 p.m.
Arrival home at 6:15 p.m.
No food for almost 24 hours
No drink for 9 hours
Poor baby
Long day
Toby was whipped

So, the new hospital is just beautiful.  Every room has this wall behind the bed that changes colors and looks like an outdoor scene.

We had a great view of downtown Columbus.  This photo was taken out of our window!

There are two flat screen televisions - a small one by the bed for parents, and the large 42-inch screen for the kids.  Toby enjoyed watching movies on the Get Well Network (it's an interactive program that allows you to play games, watch movies, and also do any educational type things that you need with your child).  Toby was in rare form yesterday - laughing and being silly.  He had two great nurses that just fell in love with their "Miracle Mile Patient".  When we left both of them walked us all the way to the van - his entourage! :)

So, I had been preparing Toby for this day and we've also been discussing his future surgeries.  For the first time he remembers being in the hospital this past March/April when he had his ETV and his major seizure a week later.

March 17, 2012

He always asks me if he will have to stay or will he be able to go home afterward.  Then, he cheers when he finds out he doesn't have to stay.  It's definitely getting harder emotionally to do this!  We had a great laugh in the van, though, because he asked, "Mom, do you remember when I told the nurses that you were in the potty?"  At first, I had no idea what he was talking about, wondering if he was talking about something at home with our home care nurses.  Then, I remembered that this was something that happened his last stay and he remembered that.


You have to understand that for the first time Toby is remembering things and talking about them.  Mentally, physically, and socially he is maturing and this is so encouraging for us to see his conversational skills expanding.  The mere fact that he does remember the last stay, something that happened, and that he asked me about it is AMAZING!

We sat in the O.R. waiting room for awhile, and then I decided to go and visit a new friend whose son was inpatient. While I was away, I missed our neurosurgeon stopping by.  He had to leave early, so he stopped by and spoke with Bruce and then left.  Bummer!

Bottom line - Toby will need a spinal cord de-tethering surgery.  The doctor looked at what they had scanned so far and said his ventricles looked good, and it appears his ETV is working.  They were still scanning the spine, but the fact of it is (and I've known this for years)...all kids with SB have tethered spinal cords.  It was interesting this year at the National Conference to sit in one of the sessions and see how low in the back our kids' spinal cords are compared to other healthy kids.  It's pretty low.  After initial back closure surgery, the scar tissue (which helps the healing process) adheres to the spinal cord.  Putting the rods in for the VEPTR are going to stretch him out and also stretch his cord, so they need to release it.  I was expecting this, preparing for it, but it's still not easy.  Toby's back scar isn't pretty - it stretches across his entire back and is a jagged diagonal scar.

This is Toby's back scar, and that red mark is from his night-time brace, which is why I knew that his scoliosis was getting worse and he would need rod surgery.  

He also develops scar tissue quite readily, we know this because of his prior surgeries and his bowel obstruction last fall, which was a result of internal scar tissue adhering to his intestines.

The surgery makes me nervous.  This will be surgery #13 and #14 for our Toby.  He's been through so much, and the release can be pretty complicated.  I'm expecting it to be complicated.  I was also so frustrated yesterday because
A.  I missed talking to the doctor - he spoke with Bruce, but I didn't get a chance to ask all my questions.  B. We didn't walk away with dates on my calendar.  I wanted to walk away with dates!
C. I'm having to wait again.

Now, that we've accepted that he needs these two surgeries - I just want to get them scheduled, completed, healing done, and move on with life.  I want to be able to PLAN!  Planning is what I do best, but instead we have to wait..and wait some more.  I'm ready to get on with it.

God continues to teach me that it's HIS timing.  This is not in my hands, I can't be in control, and waiting is what we need to do right now.  It's tough waiting.  Did I mention I don't like waiting?
We have several pre-op appointments, and scheduling through the hospital is never quick or easy.  The orthopedic surgeon really didn't want him in-patient during cold and flu season, and we will be smack in the middle of it.  The neurosurgeon thought the de-tethering would be end of October, with VEPTR around the beginning of December.  There are holidays to plan around, childcare to arrange, others are waiting on this to get their own schedules fixed in place.  But, then I look back earlier in the week to Monday when we didn't even have an MRI scheduled.  Three days later, the MRI is complete, done!  God's timing is not my own - He continually reminds me of that.  I can't control everything is lesson number 2 - and His plan is always better than anything I could come up with on my own.  So, we will wait.

Some funny sayings from our Toby this week:

"Mom, I have big muscles just like the "HULK"!"
"Mom, I love you - you are my best girl!"  Melts my heart...
He told the nurses in pre-op waiting, "that he was shaking his bootie!"