Back Story .... Surgery #4

Well..  Where do I begin?

Let's rewind time to September 11. This was the day that Parker had a routine check-up with his Neurosurgeon. It had been 6 months since his last visit. He had been doing pretty good (or so we thought), so honestly I wasn't a tad bit worried. In fact, I went to this appointment alone. They changed the date at the last minute. Instead of rescheduling his appointment we decided that since he was doing so well, it would be an in and out procedure. These appointments are always in and out. No need to get all worked up about who could make it and who couldn't. In fact, I had my afternoon planned to pick up racing packets at a sports store in the mall and grab lunch with Parker after his appointment.

I couldn't have been more wrong about how this day would end.

The day started off typical. We first signed in so he could get his MRI. Now, here is where things started to get off track a bit. Myself or Casey always go back with Parker when he gets his MRI. One of us stands guard with the stroller and diaper bag, the other takes him back with the technician. Then a technician goes into the machine with him to help keep him calm. He always does a great job. In and out in 2 minutes! Because a technician goes in with him we stand back with the other technicians and see the results of his MRI as they are coming through. We aren't by any means Radiologists, but we aren't complete idiots either. This first glance of his scans usually give us an idea what his ventricles look like. Most of the time, to the naked eye, they don't look too different.

Well, this time the technician looks at me and asks if I want to get in with him. I had never seen her before and she wasn't playing around. This lady was in a hurry and wasn't offering to go in with him. So, I don't hesitate. I didn't want him to be frightened, so I stripped off my jewelry and hopped on top of the table to go in with him. Frozen soundtrack and a set of earplugs later we were getting the scan.

So...obviously I was unable to see the scans because I was side kicking it with Parker...

After his MRI we went to meet with his Neurosurgeon. My experience with this office is that we are in and out, quickly. They are very busy balancing patient appointments and procedures and typically don't make you wait. Today, however, we waited for 45 minutes.

"Have you seen him yet? What is going on? I am on pins and needs," Casey text.

I replied, "I know I literally have no clue what is taking so long. It never takes so long. He must be really backed up with patients today."

As a mother of a toddler I pride myself on creative entertainment. One can only entertain a toddler so much in a Neurosurgeon's exam room. They don't even have real beds...! So, cups and odd tools it was!

Finally I could hear a knock at the door...

First words out of his mouth were, "Where is your husband?"

I look at him and reply, "Not here."

"He's not here," the doctor said.

At this point I am like okay, what is going on here. Commence bad gut feeling...

He sits down and says he that he just went through Parker's entire file. Note, he has not been at the university hospital for an entire year. He was actually at another hospital doing a fellowship and we were seeing an interim doctor. I never really clicked with the interim doctor and was so excited to have our original surgeon back. He knew I was emotional and at times crazy, but took Parker on anyway. Brave man. It took me two months to get our appointment switched to this surgeon from the other. I just had a feeling Parker needed to be under the care of him.

"Okay. I am going to let you tell me what's been going on and then I'll give you my thoughts," he says.

I was a little confused because I wasn't really sure what was going on that I needed to talk about. He must have noted my confusion and then brings up all kinds of issues we were having with other specialists at the hospital. He seriously read through every single note from every single doctor I had talked to since he had been gone. God love him.

So, as Parker is literally ripping the office up, we talk about all of the appointments and phone calls that went on throughout the year.

Here are some of the highlights:

- MRI in December 2014 indicated ventricles were at a very low state - almost too low.

- Hospitalization in March 2015 because of unknown excessive vomiting - MRI at that time indicated ventricles tripled in size - they were however on the "normal scale" and no intervention was needed at that time.

- March 2015 (2 weeks later) - MRI at that time indicated ventricles were a tiny bit bigger. We were told this could be Parker's new norm.

- June 2015 - Parker has significant developmental delays and is red flagged at a Neonatology appointment. We were referred to the Center for Disabilities and Development at the university for assessment.

- July 2015 - Parker begins having "zoning off spells". I contact his Neurologist and we were to talk about a possible EEG and MRI. No one from the office called to schedule and I did not aggressively seek to make this appointment. The spells went away. (side note: feeling pretty guilty about this)

- August 2015- Parker begins regression developmentally. He loses balance and easily falls many times throughout the day.

- September 2015 - Parker begins to lose balance more frequently and starts zoning off spells again. He wakes many times throughout the night.

I look at him a little bit overwhelmed by his take on the timeline.
"When you put it that way, yeah, I guess there has been a lot going on...," I say.

He replies with, "Let me just watch Parker for a couple minutes."

This was kind of awkward. Was I supposed to be a silent bystander in this period of observation? He clearly doesn't want me talking. I am a nervous talker and Parker's Neurosurgeon is a studier. Not a super good combination, but I did my best to shut up. He has moments of silence where he is just thinking. I do my best not to act weird or awkward. This was seriously the longest 5 minutes of my life.

Of course during those 5 minutes Parker is falling all over the place and  acting as rotten as can be. At this point he had been in the tiny exam room for over and hour and I can safely say was over the entire experience. Cheerios and Kleenex are flying everywhere - at one point he was slapping his surgeon's shoes. He even went behind him and started flapping his white doctor's coat. My god this child.

So, then the Neurosurgeon pulls up all of Parker's MRI scans to show me his measurements. Sure enough, his ventricles were getting bigger. Knowing how crazy I am he even got out the good ole measuring tool on the computer to prove to me that they were bigger. At this point in the game he said it was his belief that the valve in his shunt malfunctioned back in December, hence the huge variation in the size of his ventricles. So, his best guess...the valve was broken.

Which means brain surgery to repair it. You've got to be kidding me! Commence tears!

"I mean he has to have surgery? Are you sure? I don't know what to do," I wailed.

He replies, "Look. It's my best guess. There is a lot going on and in six months we are going to wish we took care of it now. It's not super common to operate when a patient isn't showing shunt malfunction symptoms, but with Parker, we can't take many chances."

"So you would do it?" I ask.

He said, "Yes. I would do it. I can do it today even."

"What! No. NO. I cannot do this today. I don't even have a clean pair of underwear packed," I cried.

<Why that came out of my mouth I don't know. Moments you can't take back...>

He then said that he didn't want to wait long, but, if his Shunt Series x-rays came back normal we could wait a week. So, I agree and we go get his x-rays. These x-rays show the shunt and all of the tubing that goes down into his abdomen. Typically doctors can see if there is a kink or some level of disconnection.

They came back normal. Whew.

The doctor then says he is going to do all of the pre-op tests while we are there. So, I went on a mission through that entire hospital for x-rays, blood work and a physical. The highlight (I say this with complete and utter sarcasm) was probably getting a urine sample from a toddler who wears diapers. Like, are you kidding me? Wow. That was interesting. They taped this little contraption over his "man parts" and we waited.

And waited.

And waited.

Eight ounces of juice and 30 minutes later he tinkled like less than an ounce. What-ever! I say it counts! Peace!

Next thing I knew the doctor popped back in with a consent form. This is real life. When they hand you the consent form it's serious and it's happening. He went through all of the risks that I was unfortunately very aware of. One of them being a shunt infection...

I signed my name and that was it. Parker was scheduled for surgery.

At this point we had been in the hospital something like 6 hours. Everyone close to me was frantic and trying to help in any way they could, knowing I was there alone. I was really fine, though. Oddly enough I was okay. I had a couple meltdown moments, but overall, once I had a good cry, I was just hell bent on getting through those pre-op appointments, getting Parker lunch and changing his diaper. I needed to get home and talk this day over with Casey. Casey was aware of what had transpired and was also freaking out.

I cannot tell you how well Parker did. He is a scheduled child, almost to a fault. If you mess with his schedule, watch out! Well, he didn't even get lunch that day until 2PM and he is usually taking a nap during this time. He was such a trooper and his cooperation made it a lot easier for me to handle.

So with our day of surgery instructions in hand we were on our way into the world. We have never been in a world with an impending brain surgery date. Casey and I struggled all weekend with the outcome of that appointment. Immense guilt consumed him for not being there. No one wants to put their child through surgery, so of course we start pondering whether or not we were doing the right thing. It's so hard! He wasn't showing the traditional symptoms of a shunt malfunction.

The following Sunday some of my close friends and I had already registered to do a 5K Race that benefited the Children's Hospital. We went wearing our Hydro Blue shirts and dominated. While we were enjoying a couple celebratory "adult beverages" after the race a woman approached me.

She asks, "Which one of you is Parker and which one of you has Hydrocephalus?"

I look at her and reply, "Parker is actually my son and he has Hydrocephalus."

"No way. I have Hydrocephalus. I have had it since I was 6 months old. I got it from bacterial meningitis. I doctor here at this hospital," she said.

I immediately take full advantage of speaking to a woman who suffers from the same condition as my son.

"Can you feel you shunt?"

"How many surgeries have you had?"

"How do you know if you shunt isn't working?"

"How old are you?"

"What do you do for a living?"

This lovely woman answered every single one of my questions and helped me in more ways than she will ever know. In fact, her most recent surgery had been over a decade ago. She wasn't showing the typical shunt malfunction symptoms (just like Parker currently). Her mom just had a feeling something was off and sure enough, it was. She was a healthy, active and amazing young woman. Meeting her gave me so much hope and strength. Meeting her made any guilt I had about putting Parker through surgery again disappear. We were doing the right thing.

God sent her to me that day. Out of 1600 people she found me. Needless to say there were a couple tears of happiness from us that afternoon.