Spina Bifida and Hydrocephalus Awareness: Week 4

It is the final week of awareness. I'll admit there were some days that I couldn't think I'd come up with 30 different things to talk about. But after a while it just flowed.

Spina Bifida and Hydrocephalus Awareness: Day 24

Social relationships are also important within our big family of spina bifida moms.
Just as it is important to have someone to talk to and be just a regular mom, it is also important to be able to talk to someone who just gets it.

There are a number of outlets for this. I was lucky that there was a parent-baby group for the first couple of years when Nick was younger (until they cancelled it) to actually get together in real-life. Social media has replaced a lot of that personal interaction, but it still has a group of people who just get it.

Baby Center has a group Spina Bifida Kids, there are a bunch of facebook groups (including Living with Spina Bifida and Take That! Spina Bifida) and of course my own group Our Lives, with spina bifida for family, parents, children and adults with spina bifida who live in Ontario. And I can’t forget all of the blogs that are out there (including my own).

During the first couple of years after D-Day I scoured these blogs and groups and tried to find what life would hold for us. Until we just started living our own. Now I use these groups because somewhere out there someone has the same thought as me, or are thinking of the same surgery, have the same concern, or just want to vent. It is for those questions that you want to make sure you have all the information before you get the doctors opinion. As well it gives me the opportunity to give my own experiences to others.

Spina Bifida and Hydrocephalus Awareness: Day 25

I talked about Hydrocephalus and a shunt waaay back at the beginning of the month. But what is a Shunt?

If hydrocephalus is too much cerebral spinal fluid in the brain, then is there a way to take that fluid and put it in part of the body that can absorb it?

The VP shunt has been used to treat hydrocephalus since 1949, and the valve in the shunt was designed by a father (John Holter) of a child with spina bifida and hydrocephalus who just needed to DO SOMETHING, and thought that he could. And he did, creating the Spitz-Holter valve, a design that is still used today. This father continued to manufacture the shunts by hand, supplying over 500 a year.

 

 The shunt is 2 catheters and a valve. One catheter is inserted into the brain (into the ventricles) to take the fluid out, then through the valve (that is located against the outside of the skull) and takes the fluid through the other catheter, down the body, (under the skin) into the peritoneal space in the belly.

There are times the shunt stops working (called a shunt malfunction) for various reasons. This is an emergency as the fluid that is normally being drained is now building up in the brain. If this happens then it needs a shunt revision.

Symptoms that we are always on the lookout for a shunt malfunction includes

·         Headaches
·         Vomiting
·         Excessive sleepiness, can’t wake up or stay awake
·         Irritability
·         Vision problems
·         Changes in eyes, including crossed eyes, uncontrolled eye movements, sunsetting of eyes
·         Seizures
·         Personality changes

The shunt is not a cure for hydrocephalus, just an ongoing treatment.

 

Spina Bifida and Hydrocephalus Awareness: Day 26

Today is Nick’s last day of school. So I’ll talk about learning and that spina bifida and hydrocephalus are associated with learning disabilities.

 

Just because there is an association doesn’t mean it will happen, but being aware of different ways that our kids might learn can help to make sure that Nick succeeds. Anticipating.

I have a whole book all about this (thanks to SB&H). So there is a whole range of different things and areas that Nick may or may not need help with over the next years.

Information processing is the area that kids with spina bifida and/or hydrocephalus may have problems with. Numbers and symbols, visual-spatial processing, making connections and organizational skills are all identified as areas that may be difficult. Kids with spina bifida seem to have a cluster of strengths and weaknesses identified as ‘non-verbal learning disorder’ (NLD).

 

Knowing that these are areas that may cause some frustration and trying to problem solve how to help Nick learn. And more importantly identifying strengths and working on these.

 

We are just at the very, very beginning of our school-learning adventure and I’ll probably know a lot more over the next years.

 

 Spina Bifida and Hydrocephalus Awareness: Day 27

We had Nick’s neurosurgeon appointment this week. To review our yearly brain and spine MRI and to look for or rule out tethered cord.

Tethered cord is the next battle to watch out for. Usually is will occur around the age of 5-10. The spinal cord usually floats free in the spinal column, protected by all of the vertebrae bones in the back.

 But with spina bifida, the spinal cord is held in place by the scar tissue that is created with the original myelomeningocele repair. So as the child grows and gets taller the spinal cord is held in place (tethered) by the scar tissue. This causes it to be stretched and damaged or have limited blood supply to the cord.

There are a number of symptoms for us to watch out for. They aren’t necessarily obvious, but sneaky signs that you might not notice from day to day. These include a change or decrease in sensory, muscle weakness, pain or a change in bladder and/or bowel function.

There is surgery to untether the cord. Surgically loosening it from the scar tissue. This won’t improve any function that has been lost, but it will prevent further loss of function. But doing surgery to untether from scar tissue will actually create more scar tissue. Then that scar tissue will tether so another surgery will create more scar tissue and it is a cycle.

So it is a fine line between maintaining function and preventing surgery and scar tissue.

 

 

We got the all clear by our neurosurgeon this week. But it is still on our radar.

Spina Bifida and Hydrocephalus Awareness: Day 28

It is in one month that Nick is going to have surgery. It is bowel surgery, because while I’ve talked about a lot of the issues regarding spina bifida this month, I didn’t really touch on the bladder or bowels. The nerves to the bladder and bowels are damaged.

The bowels don’t really want to work. So we have a lot of constipation and continence issues. We have been treating this for the past 4 ½ years and tried all kinds of options. The surgery option have been reached after a lot of trial and error and consideration. It will have a profound impact on Nick’s daily life and independence.

 The surgery is called the MACE which stands for Malone antegrade colonic enema. It allows a catheter to go into the belly button, through a one-way passage (stoma) created in the appendix (which is attached to the colon) and allows enema solution to be given directly into the top of the colon. When the catheter is removed the belly button looks like a deep belly button. After it is healed, it doesn’t need anything to cover it.

This way of giving an enema (as opposed to the traditional way) is more effective in preventing constipating and improving continence as the colon will be empty and prevent accidents through the day. It also allows Nickolas to gaining independence to be able to do this himself.

 We are 1 month away, I’m nervous about what it will be like for Nick having surgery, anxious for the recovery to be started and then finished, but know that this will go a long way in Nick’s quality of life.

 

Spina Bifida and Hydrocephalus Awareness: Day 29

Latex allergy is one of those funny things with spina bifida. There is something about having spina bifida that makes people prone to having a latex allergy.

Historically they thought it was because of the early exposure to latex through surgery, but even after ensuring latex precautions immediately (I insisted on latex free from delivery) severe latex allergies develop. So we treat Nick as if he has a latex allergy.

Natural rubber latex (not the fake stuff) can cause severe anaphylactic allergic reactions at some point of exposure. The more exposure, the more likely to develop the reaction. Natural rubber latex is in a bunch of stuff, including many of the ‘all natural’ products. It in a surprisingly number of regular use items.

 

 

Our biggest worry and no-no is latex balloons and latex gloves. These are made by pouring latex into a fine coat to make the stretchy, rubbery surface. When balloons are popped or gloves are removed it releases latex into the air.

As well anything that goes into the mouth (i.e. dental products, pacifiers, nipples) or remains on the skin (i.e. bandaids) or that is obviously rubber (i.e. rubber bands) are not in the house.

Spina Bifida and Hydrocephalus Awareness: Day 30

I thought I would end my month of awareness with a PSA thanks to a fellow SB Mommy Joanna.

And that is it.
I hope over the month that I have helped to increase awareness and helped you to learn something you might not have know.
And at the end of the day, even with all of the medical stuff and concerns, this is what spina bifida looks like.

Not because he was born with spina bifida or in spite of being born with spina bifida. But because he is Nickolas, a little 4 1/2 year old boy who LOVES AND LAUGHS.

 

Finally a Date! ... Kind of

So I have my next appointment at Mt Sinai - the one were I was supposed to get a date. Well I have one... actually I have 2! November 12 (Thurs) and November 16 (Mon). Because of the need for Nickolas' surgery they don't want to have my surgery on a Thursday or Friday so there will be equipment and staff and testing for Nickolas during the weekdays. But Monday the 16th was full, so they need to see if they can bump someone.
Personally the earlier the better for me, (screw getting school done), he'll be out sooner, we'll get him home sooner, he'll be that much older at Christmas. Of course I also want full staff at Sick Kids so they can do all the testing - usually a head ultrasound and MRI before the back surgery. I think if he's born on a Friday, they will just do the surgery and do the testing afterwards. AND there is always the possibility of no beds and needing to wait anyways (hopefully not, but they did mention it just in case) and I of all people know sometimes NICU beds get full fast.

We also asked about latex-free setup and they'll do the c-section latex free. We got a bit of a rundown of where Nickolas will be after he is born. While they can't guarentee how things will be, we can get a 'probably this will happen'. Pretty much we'll see him quickly then he will go to the Mt Sinai NICU to be assessed, they put a sterile dressing on his back, bloodwork, IV, antibiotics (Amp&Gent). Sick Kids will be notified. After he is stable and everything is checked out, we'll see him again for longer (how long? - probably not long enough). Then when the NICU bed is ready at Sick Kids he'll be transfered across the street. Kyle will go, meet everyone and they'll have a game plan there. I of course will still be stuck in bed recovering from the c-section.

The ultrasound was ok. He didn't cooperate very much and wasn't moving very much. His head is catching up - it has been smaller (not on the scale yet), now it is on the scale. Apparently typical for spinabifida baby's. Mild hydrocephalus, the ventricles (the part of the brain that fills with fluid that makes hydrocephalus) did grow a bit, from 8 mm and 9 mm, to 9 mm and 10.5mm and I think hydrocephalus is considered at 10mm. But again that is expected. Everything is growing ok. He's estimated to be 2444gm (at 34 1/2 weeks). That is just over 6 lbs. Katheryn was born (at 40 weeks) at 2600 gms. So its not my imagination, he is bigger!

I find he doesn't move as much as before, more rolling around and less kicking and punching - but he does love head butting my bladder. Oh Joy! And he loves rock music! The louder the better and he jumps around in there.

I think that's all the updating for now. Katheryn of course is still doing well and I'm enjoying not having to go into work. But I'm getting nervous about not alot of time left, and thinking it is dragging on forever!
Everyone knows how much I like to plan everything, and can't plan ANYTHING this time around, just a wait and see and take things as they go, and have faith that things will work out. There isn't anything I can do anyways.