Visit to the Brain Docs

The majority of the last few days have kind of blurred together.

This past Wednesday, we spent most of the day bouncing between two different Children's Mercy hospitals to see the neurosurgeon, neurologist and to obtain the necessary radiology images.

After seeing our neurosurgeon, we found out that basically they were taking their "best guess" as to whether Jocelyn's shunt had malfunction. Supposedly, the CT scan that we got on November 9th when Jocie had her seizures was virtually unchanged in comparison to the one she had two years ago. Not only that, but when they tapped Jocie's shunt and found it to be 18psi (15psi is normal), that it really wasn't "that bad."

We knew prior to surgery that the CT scan were virtually unchanged and that the pressure inside her skull was 18psi, but we also thought everyone was 100% sure she was having a shunt malfunction; hence, why we did the surgery.

Turns out, even if a CT looks unchanged or "good," and when a shunt is tapped and doesn't reveal much, you can still have a shunt failure and not really know it. They said since she had been vomiting and began having seizures, that they decided to "try changing the shunt and see if that helped." I don't know about anyone else, but for some reason, them telling us that they were basically guessing made me really uncomfortable. They might have really thought and done this, but don't tell me!!!

Don't get me wrong, apparently Jocelyn needed a new shunt and we are unimaginably grateful that this type of procedure exists and that we can get fabulous care from CMH. I simply would hope there would be more evidence these days to give a definite "yes, this is the problem" or "no." But who knows, maybe there isn't?

I'm telling you right now, I know for a fact that I would have totally flipped-out if it wasn't the shunt and we went through all that ... if Jocelyn went through all that ... for nothing!!

When we hopped over to a different CMH to see the neurologist, we found out the following:

1. Seizures are "no big deal."
2. When having a seizure, its not necessary to call 911, unless its a shunt malfunction.
3. We should've used our "rescue medication."
4. Seizures do not cause any permanent damage even if the oxygen level falls to 50%.
5. That sleeping issues are a MAJOR problem with people with brain injuries and especially when that injury is from hypoxia! It is suspected that Jocelyn's pineal gland has been damaged and therefore she's unable to regulate her sleep cycles.

I think somewhere along the line with having this conversation with our neurologist, my husband picked my jaw up off the ground. First, when its your child, a seizure is beyond a "big deal!!!" Secondly, I'm pretty sure I don't have a CT or MRI machine in my backyard to determine, PRIOR to calling 911, that Jocelyn's shunt has malfunction. Jocelyn hasn't ever had seizures {outside the NICU when there was still blood on her brain}, but my very first thought was "Oh no! Her shunt has probably malfunctioned!"

Well, that was after my first initial "Oh shit!" thought!

It was pretty obvious that the specialists didn't think Jocelyn truly had a 10 minute seizure followed by 2 five minute seizures. I know for a fact the first one was 10 minutes {I know the exact time of all three of them} because I looked at the time I called 911 and then again when the seizure stopped. I can tell time! But regardless, we were informed to make sure we use a watch {and "not guess"} so that we could truly time any future seizure activity as 1 minute can seem like an eternity. That was the first statement he said that I agreed with!

Also, both our neurosurgeon and neurologist kept saying "Did you give her the rescue medication?" Repeatedly we told them "No, we've never had to use the stuff and none was ever given to us in the first place." We again told them that once all the blood inside of Jocie's brain ventricles cleared, she didn't have seizures. She will always be more susceptible to have a seizure unlike a typically developing child, but it wasn't ever brought up to keep that stuff on hand and not to mention that it has been over 2 1/2 years since she's ever even had one.

Needless to say, we now have a medication called Diastat. This medication is given rectally if Jocie has a seizure that lasts for greater than 5 minutes. Trust me, if Boogie even remotely demonstrated seizure activity, it will be extremely hard for me to not give the Diastat immediately, but I will try my best!

We have been frustrated because we have seen a difference in Jocelyn since her having the seizures and the shunt replacement, and its annoying when people make you feel like you're crazy and especially since seizures "don't do any permanent damage!" Either way, we know our daughter and she's seems different. Jocie goes from bursting into tears to laughing at a drop of a hat {a lot of 2 year-old do, but not Jocelyn ... or at least not since before this}. She seems to have lost some of her ability to balance herself {which we constantly work hard ... extremely hard ... to make any type of gain}, she neglects her left side more and her personality all around seems different. However, now that we are more than 2 weeks out, some of these things have started to somewhat improve.

Both professionals suggested that some of these changes could be from the fact that they put in a larger VP Shunt ... so the catheter inside the brain is larger ... and that means that part of the brain tissue in the frontal lobe is gone and there "might be" some residual swelling of the brain around the catheter.

Awesome!

{My sarcasm is beyond thick as would be yours, but there's nothing that can be done about it}

I'm not trying to sound like a jerk or ungrateful, because I am grateful for their education, intelligence and skillful hands; however, I am also a mother who loves our daughter beyond measure and find all of this so challenging and aggravating!!

I literally thought I was going to explode after all our appointments were said and done.

 

It doesn't help when the nurses had trouble doing basic things {like subtraction to get Jocie's correct weight ... it took the lady nearly 5 minutes ... no joke ... to subtract 100kg from 14.2kg and then convert that into pounds}, or when we have to tell them how to position Jocie for a CT or shunt series x-ray ... it was just all piling up throughout the day!

 

We typically get awesome care at CMH and I would still choose them a 100 times over, but I was so frustrated on Wednesday!

 

Through it all we learned ...

 

... Sometimes surgery is necessary even when there is uncertainty.
... We now have a med on hand for any (potential) future seizures which provides (some) peace of mind.

... We now know what to expect if Jocelyn has any additional seizures or another shunt failure.

... That we are NOT imagining Jocelyn's sleeplessness, and have received validation that she truly has a problem. Solution? We are starting to give her 2.5mg of melatonin each night and prayerfully hoping this changes our lives.

 

On a side note, I plan to print and mail literature to our primary physician that blew us off when requesting help about Jocelyn's sleeping issues. I'm not doing it to be an ass, but who knows, someone else might be in the same situation and only have the primary doctor as a resource so he needs to know what to do! And besides, knowledge is power!

 

After our busy day, we spent the next 3 days seeing lots of family and gorging ourselves on some wonderful Thanksgiving food! We had lots of celebration to do because after all ... we have so much to be thankful for!!