Shep Six Month Update

Let me preface this by saying that I started typing this post a couple of weeks ago, if not longer. So I’m going to date it like a journal entry, because I feel like the information is important, but also we have updates since I initially started getting my words out here. Hang on tight….

Early to mid July, I can’t remember when exactly:

Wow, how do I have a six month old baby again?

A six month old and a six year old.

It’s crazy to think about sometimes.

Shep has been poked and prodded by doctors we didn’t even know existed in his six months earth side. Cardiologist, hematologist, neurologist (all the “ists”), neurosurgeon, pediatrician….

The good news is that he doesn’t have a bleeding disorder (hematologist).
The cardiologist says that he has the ever-so-slightest murmur, but these always go away on their own, and he plans to keep a close listen every six months or so until it does.

We’ve been told (just recently — insert eye roll because all of these doctors feel like a lot of chefs in the kitchen, but no one knows who’s really in charge — it constantly feels like someone is dropping the ball because they assumed someone else was doing that thing that they should’ve done) that ventriculomegaly and hydrocephalus are two different things.

Shep had / has ventriculomegaly. The ventricles in his brain were / are enlarged.

Hydrocephalus would require immediate “intervention” (a sugar coated word the neurosurgeon likes to use for brain surgery). That would be if the enlarged ventricles were putting pressure on anything in Shep’s head.

Side note: it’s a weird and very new feeling to completely dislike someone who you would expect to save your child’s life should the situation arise. Shep’s initial neurosurgeon wasn’t my first choice. As a matter of fact, pediatric neurosurgeons are so few and far between where we live, I didn’t really get a choice. I don’t suppose that’s something you get to try on, like new shoes, for your kid.

I don’t like the way that he doesn’t seem to know how to communicate with us. He just speaks in big words and shoulder shrugs and says things like: “I don’t like to have that conversation until the need arises, because it tends to be an emotional one”.
And I don’t like how dated and eery his office feels (tucked away in the trees, office chairs peeling, a very fake-friendly [read: seemingly always stressed, putting on a chirpy face] receptionist, vintage, scuffed up patient tables, awful lighting, a staircase at the end of the long, narrow hall with a dip in the carpeted floor, odd looking blood pressure cuffs attached to the wall in true horror movie fashion). It’s all so weird, and I don’t know if I’m digging here, because my child does need to see a pediatric neurosurgeon, or if I really dislike him and his entire set up.

Anyway, we’re seeking out a second opinion as I type this. Fingers crossed that all brain surgeons aren’t like this guy.

Back to Shep.

The neurologist we’re seeing says that she expects Shep to be diagnosed with some form of cerebral palsy in the future. Not sure what we’re waiting on for an official diagnosis though.

Have I mentioned that I always leave these specialist appointments feeling more confused?

Apparently he had a stroke in utero.
The bleeding from that blocked the fluid in his ventricles from draining properly.
The ventricles became enlarged and blocked his cerebellum from completely forming.
And having an incomplete cerebellum is the basis of cerebral palsy in his case.

From what I’ve googled and gathered that way, the cerebellum is the balance center of the brain.

So again, we won’t know until we know how that affects him.

We’re seeing a baby-eye-doctor this week to check and see if any pressure is currently on his eyes / optical nerve. If yes, they’ll bump the sedated MRI up to a much sooner date. If no, we keep our end-of-the-month sedated MRI date.

Shep will be evaluated for physical therapy at some point in the near future. We’re waiting on paperwork for that.

It’s a lot. For me, anyway. It’s overwhelming to be honest.
I mean, don’t get me wrong, I will do anything for my kids; it’s just that I have my own issues and being in these appointments and doctor’s offices with people who consider operating on my six month old baby makes me completely jump ship and space out. I see them saying words that I don’t understand, but none of it sticks because I don’t understand why this is even happening. Why he can’t just have an easy life.
No one wants their kid to struggle. Or to think about seeing them being poked and prodded and potentially operated on. It’s a lot.

Some days I break down.
Some days I’m fine.
My mind is constantly flooded though.
The what-ifs are loud.
My kids are also loud.
I find myself with a short temper.
But also, I worry about other things too.
So they all mesh together.

What-if he doesn’t tolerate sedation well.
What-if he needs brain surgery.
What-if he needs more than one brain surgery.
What-if they want to put in a shunt.
What-if the shunt gets infected over and over again like Google says it will.
What-if I’m not giving Eleanor the attention she needs and deserves.
What-if me worrying about Shep all the time is hindering my ability to be a good mom.

But also, this smile makes my heart swell.
I didn’t know it, but my heart needed Shep.
If you’re new here, he was quite the surprise for us.

CURRENT DAY:

So we went for a second opinion from a new neurosurgeon yesterday, but let me back up and retrace our steps for all of the things that led us here between my last entry and now.

The ophthalmologist (baby eye doctor / surgeon) appointment went as well as it could have gone. There was no pressure on Shep’s optic nerve, which should mean that there would be no pressure in his head. We were thrilled. However, his eyes still cross from time to time, so they suggested that we patch his stronger eye and come back for a checkup in three months. DONE.

Shortly after that appointment we had an MRI with sedation scheduled at the hospital where he was born (2.5 hours away from us, at 6am), with an immediate follow-up / MRI reading with his neurosurgeon across that same town.

I’ll spare you the details of the MRI process, but basically the ventricles are much larger than they should be. However, you can’t exactly tell from the MRI if there is actual pressure from the fluid that is built up in the ventricles. The surgeon suggested we go in and drain the fluid with an ETV surgery (they poke a hole to bypass whatever is causing the fluid not to drain, in his case at this point it’s an exit that is too narrow), and then if that doesn’t work, he will make the call to place a shunt (a long tube that stays in his head [forever] and drains the fluid from his brain to his belly, where it can reabsorb – these have a 50% failure rate within the first year, meaning a replacement surgery asap. They also have high infection rates).

In his words, if he were to have to make the call to place a shunt (mid surgery), we would “just be grateful to him” because that was the last option to help Shep.

I know he meant that in a comforting way, but his tone and the way that he presented every bit of information to us was so condescending and just not comforting at all. He left the room (fifteen minutes later, which by the way is the longest amount of time he’s spent with us in Shep’s six months worth of visits where we’ve waited hours to see him) telling us it was up to us whether or not we wanted to move forward with surgery.

Optional brain surgery for our infant.

OPTIONAL BRAIN SURGERY?

My husband immediately called our pediatrician (who happened to be on a two week vacay) to ask for a referral elsewhere.

I couldn’t breathe.

Everywhere felt stuffy and hot.

I also hadn’t eaten, and didn’t feel like eating, but knew I needed nourishment.

Shep was still groggy from the morning’s sedation.

Leslie was driving us two and a half hours home, while simultaneously juggling phone calls between doctors offices and hospitals.

That was not a good day.

Moving forward, we were able to get a referral, have his MRIs sent over to the new neurosurgeon’s office in Jacksonville and schedule an appointment with them.

The only available time slot: Eleanor’s first day of school.

Instant mom guilt.

I’ve always judged moms who focus too much on their “sick kid” and too little on their “healthy kid”.

Now I’m that mom.

The one who has guilt over both her kids’ quality of life at the current moment.

The one who can’t find the balance no matter how hard she tries.

Anyway, we drop Eleanor off and make arrangements for her to be picked up from school.

Off we go to the next pediatric neurosurgeon.

His office is inside of a hospital, and this hospital is only allowing one parent inside because of the uptick in Covid cases.

I take Shep inside alone, because I’m the one with the milk-making boobies and Leslie waits in the car.

Just gonna jot down a quick list of things I noticed:

The receptionist doesn’t seem stressed.
She jokes with the nurse.
The nurse was friendly towards Shep and myself.
The NP had such a calming voice.
The surgeon didn’t mind that I took the time to Facetime Leslie and let him be a part of this meeting.
Every question that I had was met with “that’s a good question” and a thorough answer.
He sat with me for AN HOUR talking about Shep and his scans and his treatment options, along with their risks and success rates.
When I asked what he would do if it were his kid, his first response was that he would consult with his wife (our previous neurosurgeon never mentioned the mother of his child(ren), and instead said that he would find a trusted colleague)

It’s really all the little things that add up to big things, y’all.

When we initially asked for a second opinion, I sobbed to Leslie asking if we were just in denial. HOW would we make the decision? We aren’t well versed in pediatric neurosurgery. What if we got the answer we were looking for: that he doesn’t need surgery? Do we just accept it because that’s what we wanted to hear? Like how do we know we’re making the right choice one way or another? How do we choose one surgeon over the other? Just because we didn’t like his initial surgeon doesn’t mean that he’s not capable of doing his job. Are we choosing emotions over logic? Should we be putting our emotions aside and choosing logic? How does one even do that when it comes to their child?

We didn’t have answers for ourselves.
We just had to move forward and do the next thing.

So we did.

And then we knew.

Because all of the little things add up to big things.

This surgeon sat with me for an hour, y’all.
I know I already said that, but all the times we’ve seen the previous surgeon and actually sat with him do not even add up to that. Sure, we’ve waited on him in an empty room for that amount of time, but actually talked with him? Maybe five minutes here and there. The last appointment being the longest and most thorough at a whopping fifteen minutes, and only because surgery was on the table at that point.

The new surgeon told us that surgery wasn’t really optional, and that Shep would need it at some point. “You want more brain and less fluid, so we need to drain the fluid” makes sense to me. I had never been told that before.

He also said that sometimes “pressure never occurs” for babies, because their heads just grow to accommodate the extra fluid, since the bones aren’t fully hardened and they still have their soft spots. Adults would know immediately that something was off, because our heads are made of bones, so therefore they don’t grow bigger to accommodate the extra fluid.

Even if no pressure occurs, Shep’s brain needs space to grow and develop; and the fluid won’t allow for that to happen. He could have bigger problems down the road when he just doesn’t develop, grow or learn like he should, if we don’t get rid of the fluid.

Turns out, he doesn’t favor shunts at all. He favors the ETV. But also there’s another option that he can do in conjunction with the ETV that’s fairly new (five or so years of study and follow-ups) that ups the chances of the ETV working properly.

Turns out, he trained in Uganda at a “bush hospital” with the guy who INVENTED this fairly new procedure. The guy who invented it, did so because that area in Uganda couldn’t keep up the maintenance of shunts, so they needed a way around placing shunts. He now works for the top pediatric neurosurgery hospital in the US (Leslie remembered reading about that hospital previously)

I don’t know, but this felt like a big YOU’RE MAKING THE RIGHT MOVE sign to me.

Not every neurosurgeon can even offer this second procedure. (Which will all take place at once, it’s not a second surgery. Basically he will burn two of the things in Shep’s brain that produce CSF fluid, so that not only will fluid drain out, it will also produce less, therefore reducing the chances of swelling even more.)

Another thing that the new surgeon did when going over Shep’s scans was offer further assistance in finding out why this happened in the first place. He said that he didn’t specialize in that, but that his neuro-team meets on Thursdays and that he would present Shep’s scans to them and see if the neurologists that attend had any information for us moving forward to help figure out the “why”. NO ONE has offered any such services to us in six whole months. Even Shep’s current neurologist (who is fine, we haven’t had any issues with her at all) has just been on the path of monitoring Shep moving forward without any digging and trying to find answers.

I think it’s a different set-up and situation with the new surgeon and his team though. They seem to be learning and research oriented.

We were even offered the opportunity to be a part of a study that they’re a part of in terms of how different treatments are effective for hydrocephalus. (We declined, because it’s a blind study so we wouldn’t have a say in which procedure Shep would get, and it could potentially result in him automatically getting a shunt for the sake of research)

I feel like I’m rambling, and using words like “thing” instead of technical terms, so bear with me…

We are moving forward with surgery.

Brain surgery on my baby, and I’m terrified.

There are so many what-ifs, and it’s not a one-size-fits-all or this-will-definitely-work, one-and-done treatment at all. The chances that he will need a second surgery in the future are big.

So it’s scary.

Not only that, it’s just going to be me and Shep [for close to a week], alone in this thing.
Without our people.

And then there’s the aftercare of SURGERY, which is always so scary.

I’m dreading this for all of us.
But what else can we do?
There’s no other option to fix fluid on the brain.
Nothing less invasive.

So here we are.
This is six months…..

Just to recap, because that was really long and curvy and I feel like I’m leaving so many things out.

Shep had a stroke in Utero (we don’t know why that happened).
It left behind blood in his head.
The blood blocked fluid from draining properly.
His ventricles became enlarged.
The ventricles were so big that they didn’t let his cerebellum fully form.
The ventricles tapered off at birth.
The ventricles have since grown larger again.
They’re holding too much fluid again because one of the exits is too small.
His brain needs to be able to develop and the fluid is taking up valuable developing space.
We need to drain the fluid.
He’s scheduled to have surgery this month to drain the fluid.

Please keep him in your prayers.