Sunday, October 24, 2010

The Inevitable Shunt Revision

Well we dodged the bullet for over 5 years but it finally got us...the first shunt revision.  I mentioned on Friday that Caleb has been complaining of headaches for over a week.  Just off and on, not all time, but it was enough to get me quite concerned.  I had called his neurosurgeon earlier in the week and we scheduled Caleb for an MRI and shunt series this coming Wednesday.  I kept waiting for bigger symptoms that would let me know, without a doubt, that Caleb's shunt was not working.  I kept expecting vomiting and lethargy, something more than just headaches.  Everyone in Texas right now has a headache because allergies are so high so I kept thinking maybe it is just allergies.  Then this morning as Caleb was barely eating his breakfast he got teary and said "my head is hurting, please rub it.  Why does my head hurt all the time?"  Well that was enough for me so I had the on-call neurosurgeon paged and he said "Yep, sounds like it's the shunt, take him to the ER."  The best thing about having a shunt is that there is absolutely no wait in the ER, they get your right in.  CT scan and x-rays showed that Caleb's ventricles were enlarged so he had his first shunt revision at 2:00 today.

Caleb's neurosurgeon was not the on-call doctor so Caleb's surgery was done by another neurosurgeon in the office.  I've heard good things about this guy so I was more than comfortable with him doing the surgery.  Before they took Caleb back for surgery, the doctor asked if he could pray with all of us.  I have never had a doctor offer to pray.  I was amazed.  And touched.  I believe in prayer and it's nice to know that the doctor that is going to be operating on my son believes in the power of prayer too.

Caleb was such a trooper.  I don't think he fully understood what was going on.  We told him that he was getting a new shunt so that his head wouldn't hurt anymore.  I could tell that he was scared and he was trying really hard not to cry.  They let Glenn and I stay with him while he went to sleep.  Watching him drift off to sleep was both comical and heartbreaking.  That's my baby.  And then watching my husband, my best friend, Caleb's daddy, just melt into tears after they took Caleb away....well there just aren't words.

Caleb's shunt (the catheter that goes into the brain) was partially blocked.  So it was draining some but not very well so that is probably why we were seeing the headaches but not more serious signs like vomiting.  Odds are that if we hadn't done anything, Caleb would have eventually gotten worse.  And there is no way to know how long this has been going on, it's possible his shunt has been partially blocked for weeks. So now I'm thinking about the past few weeks and since hindsight is 20/20 I am realizing a few things that are odd.  I hate to think that this has been going on for some time and we had no idea.  I hate that I second guessed those headaches he was having even when I felt in my gut that something was wrong with his shunt.  I'm glad I called the doctor this morning and had it addressed today.  I'm glad I decided that we just couldn't wait until Wednesday to have his MRI.  But I could still kick myself for not getting him in sooner.

 Here are a few pictures of Caleb after surgery.

Enjoying a popsicle.

 One of his favorite things to play with right now is his "magna doodle" so I made sure I brought it to the hospital.  It was hard for him to write with the IV in his hand though.

 Me and my baby.  I'm pretty sure he is forcing this smile! 

So, the plan is for Caleb to come home tomorrow morning.  Prayers are still very needed.  There is always a risk of shunt failure right after a revision so it is possible that we could find ourselves right back in the hospital if this shunt doesn't do it's job.  There is also a risk for shunt infection in the weeks following the surgery.  So please continue to pray for Caleb.  

I remember a couple of years ago Caleb's neurosurgeon told us that the average shunt will last 6 years.  Many shunts fail before that and some shunts last many years longer but 6 years is the average.  I feel like I have just been waiting for his shunt to fail because we knew it was coming...we just didn't know when.
  Hopefully this one will last for the long haul!

23 comments:

fivejensenboyz said...

WOW....that is amazing....so quick and the prayer....also amazing......NEVER has happened with us. Praying still that Caleb will do fine with this revision and you have a long wait for the next. Right now Kumaka is in the long wait process...he had three the first two years....he's been good for awhile. Get some rest.....I know God's watching over your family.

Kathy said...

Shunt drainage is a wierd thing. Don't beat yourself up over not seeing it sooner. The fact that he wasn't having any other symptoms yet is proof that you caught it early. But it still breaks your heart to see your baby going into yet another surgery. I'll be praying that all goes well in getting used to this new shunt.

Hagen and Mason said...

I love that the doctor asked to pray with you. So amazing!!! Yet one more thing I love about Cook's. Glad the surgery is behind Caleb and hopefully his recovery will be fast and with no infection or complications.

Joanna (and David) said...

Wow. That post has me teary - not only because I have the "that could/most likely will be me someday" in my head - but the fact that the doctor asked to pray with you all -God is so amazing - He takes care of us in the most unexpected, perfect ways. Our thoughts and prayers are with you for a continued recovery and LONG shunt stay for this new one. :)

JourneyWithTheCrosiers said...

Praying for Caleb! Hoping he continues to do well and the revision worked.
The part you said about your husband melting...got me! Took me right back to seeing Rodney as they took Beckett away from us for his closure surgery at one day old. I think that was harder than receiving "the diagnosis."
Hang in there. So glad you were in such good hands with a surgeon who offered to pray with you. AMAZING!

amybresee said...

Makes me sooo happy to see that picture of him eating a popsicle already! You are a great mom! Nathan will be so happy to hear that Caleb is doing so well.

Haley said...

Praying for sweet little Caleb and for you guys as well. I know it was comforting to know your doctor is praying, too. Such a gift!

Sandy said...

I hope Caleb is doing well very soon! Wow, that is so awesome the Doctor wanted to pray with you.

Kat Curlee said...

Caleb, you are a REAL trooper!!! You are such a strong little boy...and so in tune with how your body feels! We are SO proud of you!!! Keep telling Mom & Dad when you feel yucky...'cause there here to take care of you!

Cassie, you are so strong! It's hard to see our children suffer...but it sure feels good when they're back on track!

We'll be praying for you in the days and weeks to come that his new shunt will be just the perfect placement and that there are NO complications! In the meantime, now you know what to look for!!

Hugs to you and Glenn!!!

Jill said...

This made me so sad! I'm so so so happy to read that Caleb got through it and I'll be praying so hard for him in the next few days that all goes well and he gets another long ride with this shunt. I HATE that he (and you) had to go through this and I hate that all of our little shunted babes will have to go through this at some point. :( Here's to a quick recovery! Hope he's home tomorrow!

Mom to Bin and Oaxie said...

So glad to see the little man looking so good. Glad you were able to get to know Dr H also. He has been so good to Bin! He always tells Dr H that he gave him his "special bump." We r praying for a speedy & uneventful recovery. ;)

Vesti said...

So happy to hear all went well! We will continue to pray! And, I know exactly what doctor you're talking about...love him!! :)

Colleen said...

Oh! So sorry to hear he needed a revision, but wow, he had a great run with the first one. And don't beat yourself up--you still caught it very early, and of course you didn't want to rush your baby to surgery without knowing for absolute sure. I love a surgeon who prays!

Stephanie said...

Wow, this all happened so fast. That's pretty great that Caleb lasted 5 years without a revision-and even more amazing that the doctor took the time to pray before the surgery. Glad to see things went well. Caleb is such a strong little guy-he'll be back at it in no time! Sending hugs to you both!

Summers Family said...

Great job Caleb - you are a trooper! Great job mommy for catching this as quickly as you did.

I LOVE that the Dr. payed with you and that all went well. We are praying for a smooth recovery and a quick return to school :-)

Hugs to you!

Jessica said...

I saw your FB post and was SO hoping it was just going to be allergies! I'm sorry Caleb had to have surgery, but glad he is doing well now! It's so hard to send our babies into the hands of strangers like that. If I never have to do it again (and lets be realistic, I will) it will be too soon!

Heather Weir said...

Amazing that the Doctor asked to Pray with you. I was just part of a concert this evening with a speaker whose theme was 'the Healing power of Jesus Christ in our lives' He mostly talked on Forgiveness but I think if I would have seen this earlier I would have had Caleb in my heart as I sang praises to our Lord that he brings his Healing power to Caleb. I know prayer works and just know you've got a whole lot of people who care about you! You're never alone!

Dill Family said...

So glad all is well! Did Caleb get a cool new haircut?:)

Stephanie said...

I'm so sorry that Caleb had a revision. I'm glad that everything went well. Did he have Dr. Hunnicutt? He was Brendan's neuro when we lived there. We loved him. He was the first one who gave us such a bright outlook when we found out Brendan would have SB. He was the one with the "NOT Worst-case-scenario" and told us we could do this, that we would all be fine, that Brendan would be amazing!

krousehouse said...

Prayers for Caleb and your whole family! So glad he got through the surgery so well, and hoping for a quick and easy recovery.

Amanda said...

I am SO glad that Caleb is feeling better! I was thinking of you guys all day and sending prayers.
Glad the experience was good, and it sounds like you had a great doctor who really knew his patients.
I never knew shunts only last an average of 6 years. Learn something new every day!

ali said...

Dr. Honeycutt??? He was the one that externalized Cannon's shunt when it got infected. He is awesome, and prayed with us too! I love Dr. Roberts, but we were supposed to have Dr. H. See as though C's surgery was New Year's Eve, he was on vacation. But they are all great!! I am SO glad that everything went great and Caleb is feeling better. Praying for a speedy recovery and no problems getting there.

Carrie said...

Hi Cassie,
I am sorry I didn't see your FB post earlier that you thought he was having the shunt revision. I am in that stage too of doubting/wondering. Toby is whiny a lot and cries at the drop of a hat; can't figure out if he's just figured out he gets his way faster when he cries (trying to stop that) or if it's his shunt; always guessing.
I think that Caleb has a wonderful mommy (and daddy) and that you are doing a wonderful job; glad the surgery went well, and that is so amazing about the doctor praying.
Love ya lots - still praying,
Carrie

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