The Shunt. Again.
"Arent you glad it's the shunt and not tumor related?" joked the neurosurgeon. Of course, but come on already!!!!
The MRI following Ty's surgery last week showed that his ventricles were larger - an indication of hydrocephalus that we are all too familiar with. We were told that it was most likely caused by debris from surgery interrupting the CSF flow. Our doc pushed hard on the shunt valve to flush the tubing several times and that seemed to do the trick. Unfortunately, i guess it was a temporary fix. Yesterday Ty's eyes began to deviate toward the middle. By this morning he was completely cross eyed and keeping his eyes closed most of the time for comfort. We made our way to the hospital and it turns out that "cranial nerve six bilateral palsy" is a very common indicator of increased intracranial pressure and shunt malfunction. Ty just never experienced it before so we had no idea what was going on.
None of Ty's doctors are worried, they all seem to think this is pretty routine and Ty will be perfectly fine after yet another shunt revision. Lou and I are totally paranoid and edgy. Our poor baby just can't ever catch a break! And we can't ever catch our breath. Then we remind each other that it's because he will catch the biggest break of all and beat this in the end.
So... Unexpected surgery tomorrow morning. Not very complicated, we are hoping that the neurosurgeon can fix the shunt by replacing the tubing alone, rather than the entire shunt. We'll see. Hopefully we will be home on Friday. Fingers crossed for that, especially knowing that if we run into the holiday weekend it will get even harder to get discharged on a skeleton staff and we will really be stuck here.
When I left the house today, Lou asked me several times, "are you sure you don't want to bring the overnight bag?". I insisted no, because I thought I would jinx it if I brought a bag. Of course, now I'm stuck buying pj's and deodorant in the gift shop downstairs. It's really my own fault. Lou has my permission to say, "I told you so" as many times as he wants. Well, let me revise that and say up to ten times.
In the meantime, we are getting ready for another night in the hospital. Ty fell asleep a little while ago but before he did he kept saying, "let's get outta here!" over and over again. All i know is I hate this even more than he does. He thought he was going to the toy store during the whole car ride in. When we got to the hospital, he just changed his tune and talked about going to the candy store instead because he did so "gwate (great)" getting his "bwud-werk (blood work)" done. I hate that he is going to wake up here again. I hate that I have to see him off to the OR again tomorrow morning. I wonder what goes through his head at this point. He's been to the OR more than any person should have to in their entire life and he doesn't know if he is going to wake up okay or if he will be on a ventilator with a hundred stitches on his skull. I probably won't sleep a wink tonight knowing how poor Ty will be so nervous in the morning. Actually, knowing Superty he will just grin and bear it as usual while I walk away sobbing. He is seriously so tough.
Please cross your fingers for a simple procedure tomorrow, a quick recovery, and a visible difference in Ty's vision immediately following the surgery. Thank you for your continued love and support. With love from Ty and all of the Campbell's.
The MRI following Ty's surgery last week showed that his ventricles were larger - an indication of hydrocephalus that we are all too familiar with. We were told that it was most likely caused by debris from surgery interrupting the CSF flow. Our doc pushed hard on the shunt valve to flush the tubing several times and that seemed to do the trick. Unfortunately, i guess it was a temporary fix. Yesterday Ty's eyes began to deviate toward the middle. By this morning he was completely cross eyed and keeping his eyes closed most of the time for comfort. We made our way to the hospital and it turns out that "cranial nerve six bilateral palsy" is a very common indicator of increased intracranial pressure and shunt malfunction. Ty just never experienced it before so we had no idea what was going on.
None of Ty's doctors are worried, they all seem to think this is pretty routine and Ty will be perfectly fine after yet another shunt revision. Lou and I are totally paranoid and edgy. Our poor baby just can't ever catch a break! And we can't ever catch our breath. Then we remind each other that it's because he will catch the biggest break of all and beat this in the end.
So... Unexpected surgery tomorrow morning. Not very complicated, we are hoping that the neurosurgeon can fix the shunt by replacing the tubing alone, rather than the entire shunt. We'll see. Hopefully we will be home on Friday. Fingers crossed for that, especially knowing that if we run into the holiday weekend it will get even harder to get discharged on a skeleton staff and we will really be stuck here.
When I left the house today, Lou asked me several times, "are you sure you don't want to bring the overnight bag?". I insisted no, because I thought I would jinx it if I brought a bag. Of course, now I'm stuck buying pj's and deodorant in the gift shop downstairs. It's really my own fault. Lou has my permission to say, "I told you so" as many times as he wants. Well, let me revise that and say up to ten times.
In the meantime, we are getting ready for another night in the hospital. Ty fell asleep a little while ago but before he did he kept saying, "let's get outta here!" over and over again. All i know is I hate this even more than he does. He thought he was going to the toy store during the whole car ride in. When we got to the hospital, he just changed his tune and talked about going to the candy store instead because he did so "gwate (great)" getting his "bwud-werk (blood work)" done. I hate that he is going to wake up here again. I hate that I have to see him off to the OR again tomorrow morning. I wonder what goes through his head at this point. He's been to the OR more than any person should have to in their entire life and he doesn't know if he is going to wake up okay or if he will be on a ventilator with a hundred stitches on his skull. I probably won't sleep a wink tonight knowing how poor Ty will be so nervous in the morning. Actually, knowing Superty he will just grin and bear it as usual while I walk away sobbing. He is seriously so tough.
Please cross your fingers for a simple procedure tomorrow, a quick recovery, and a visible difference in Ty's vision immediately following the surgery. Thank you for your continued love and support. With love from Ty and all of the Campbell's.
Dear Cindy,
ReplyDeleteI doubt "I told u so" is on anybody's mind right now so get that out of your head, in fact, clear your mind completely cuz SuperTy would want u to so you can sleep. God Bless you for all that you do. I am praying for all that you said. I believe in positive thinking and you are getting nothing but that from me.
I love you SuperTy, all my heart!!!!!!
Elaine
Hang in there. Here comes the sun, and a new day. Soon you all will be able to put this far behind you. Stay strong. Go team Super Ty. Love and prayers on the way.
ReplyDeleteWe will keep you all in our prayers!
ReplyDeleteRemember, that this is another round, one SuperTy has won in the past. Now focus your energy in health, peace and love.
We hope everything goes well tomorrow. Hang in there and try to sleep a little, at least. Soon you will be home.
Remember:
When at night you cannot sleep, talk to the Shepherd and stop counting sheep. - Anonymous
The peace is won by accompanying God into the battle. - Eivind Josef Berggrav
Peace comes from within. Do not seek it without. - Buddha
Cindy,
ReplyDeleteKeep those hands up and keep up the fight.
We will be thinking of Ty tomorrow and will keep him in our prayers.
Try and rest tonight so you will be ready for Ty tomorrow.
Love,
Janine
I wasn't expecting this post this morning! :(
ReplyDeleteI am so sorry! But, like you said, it should be an easy procedure and just look forward to being home on Friday.
I often sit and wonder while reading your posts what Ty is thinking about all this too. How much he understands, how much he gets it, if he wonders "why me"?, etc. etc. It is something no child should have to deal w/ and yet Ty is a strong one who always perseveres!!!
Hopefully you can take Ty to the candy store this weekend....he sure deserves it! :)
Thinking of y'all in GA,
Jan
An optimist should never be faulted for being positive. So you saw the glass half full. You had faith and there is just a little hurdle. You are simply amazing and other than letting Lou simply have a little fun, you should not blame yourself. As I read your post my first response was looking up at God and saying "come on, really." Poor Ty just keeps truding along with such a beautiful smile. I just know it is his will that really is beating cancer up. All of you are always in my prayers.
ReplyDeletehow i wish and pray that this nightmare ends for lil Ty and your family (and so many countless other familys out there suffering like this) i pray to God for lil Ty's miracle and i pray that it comes sooner than later. i pray to God everyday for a cure to this monsterous disease. always praying for lil Ty
ReplyDeleteFingers tightly crossed for you all as usual! I always have you all in my prayers and hope for the best for you always!
ReplyDeleteThis poor little guy....We're all praying for you mommy and Ty. He looks so much like my 3yr old Patrick (Patchy), that it makes me cringe. Patrick is always coming up while I'm on your blog and says, "daddy daddy, Ty...we wuv u Ty...." So cute. We have family that work at the Tomorrow Chindrens Institute in Hackensack NJ, so we're always talking about Ty. Goodluck this week. Where there's a will, there's a way! Be strong....mom.....
ReplyDeleteWith Love and Prayers,
The Chase Family