Saturday, December 20

I'm kind of a mess but I'm kind of okay with that

There are some moms out there who have really figured this special needs mom stuff out. They never appear jealous. They never appear to be unforgiving. They never wonder what life would be like without their special ones. They never, ever feel bad when another parent shares another milestone about their developmentally-normal child. How wonderful for them, to only ever feel love, to only ever be supportive, and to only ever just be the best darn human humanly possible.

OMG! Beige!
I feel that there are a whole lot of dishonest, sanctimonious people out there in the blogging world. Every time I read wonderful, heartfelt, honest, and brave blog posts like this one here, I also have to read negative comments from people who simply cannot allow their online personas to reveal that they are, in fact, actual human beings. I have to endure people telling me exactly how I should feel -  happy, positive, joyful, whatever. It's okay to admit that some of this "journey" kind of blows. It's okay. It really is okay.

All I can say is, I am trying. I used to be so much worse. I used to be angry and impatient. I used to feel very sad about our situation. Why the f&^k did this happen to me? Yes, dear audience, I once dared to wallow in self-pity. And you know what? I still do, only slightly less. Let me put it this way - I wallow just enough to feel sad - but not enough to make vodka smoothies in the morning. I have only been doing this mom thing for 3.5 years. I have changed my views and opinions on everything and anything numerous times. I have gone back and looked at things I wrote 18 months ago and thought - holy moly, that's a terrible thing to say! But I've left these things alone and unedited for people to read. We curate so much of our lives; I think I'm brave enough now to just leave my messy stuff out there.

Sometimes, I wonder if living in a protective positivity bubble all the time would actually be easier. I would love, maybe just for a day, to be the sort of person who can rise to the occasion, and feel really, truly, 100% honestly happy every time someone tells me about something awesome that happened to them. I wish I could make statements like - "all moms have it equally hard." It simply isn't as hard for everyone. 


Oh go away, rainbow

We are in the process of deciding what to do about Kindergarten, which Branko is eligible to attend in September 2015. Unless his medical situation changes dramatically, we are assuming that he is still going to be under quarantine, which means no school.  It's going to be hard to see all the pictures of his peers on that very special first day, all the adorable backpacks and lunchboxes, and all the beaming faces of kids who can walk and who don't have to carry around oxygen tanks. I know I'm going to oscillate between that lovely part of me that's happy, the part that's in the minority, and this huge part of me that's still very sad. In the meantime, I'm going to continue feeling just a bit broken and just a bit happy. And I'm not going to pretend that it's easy.


Wednesday, December 10

Doctors are cool. Technology is cool. Can we all be friends again?

I feel really bad when doctors make mistakes - whether it's just a plain ol' fashioned lack of competency or understanding, or a lack of being proactive and simply not gauging the severity of a situation. I feel bad for them because there are very few professions in which mistake = death. I have made many mistakes while teaching. I once made a mistake while writing a final exam, using the wrong chemical formula for acetic acid. Did anyone die? Unless one of my students went on to open a chain of vinegar restaurants, I'm pretty sure my mistake was harmless. (I just googled "chain of vinegar restaurants" just to make sure. Yep, we're good)

Branko's situation was (and is) a bit of a mystery. Since he's the only person in the world with this genetic condition, it's actually pretty easy to rationalize any mistakes with, "hey, they just didn't know." There were some difficult times, prior to when the doctors fully understood what was happening inside his body, but I like to think of these scary moments as necessary steps in order to receive the high level of care Branko is receiving now.*

There is one particular test that has driven us BANANAS. It's called a sleep study. It's actually a very interesting procedure, one that takes about 10 hours overnight in a hospital room. In a nutshell, hundreds of probes, stickers, and knick-knacks are placed all over the body. In theory, your kid goes to sleep (HAHAHAHAH) and a technician collects data. This procedure is used to diagnose sleep apnea and to specify any overnight oxygen requirements. Lastly, the procedure is able to record overnight carbon dioxide patterns. This is where Branko's problem lies.

Branko has chronically high carbon dioxide levels (hypercapnia), which can have some pretty nasty effects. (If you, dear reader, did your homework and made it through this info, please read on. If not, go back and get caught up and please don't let me catch you slacking off again.)

The tricky part about hypercapnia is getting accurate data for a diagnosis. There really isn't a fast and accurate test to measure carbon dioxide in the blood. The more commonly used, but inconvenient and inaccurate method is called a "cap gas", and involves filling a long skinny tube (capillary) with blood via a toe poke. This is usually how it all goes down with Branko:

1) Toe is poked, no big deal, but it takes forever to fill the tube. Branko screams.
2) Because he is a squirmy, sweaty boy who hates having himself pricked for blood (LIKE EVERYONE IN THE WORLD) the test takes even longer than usual. Branko screams.
3) Because the test took so long, blood has clotted and the sample is useless. Branko is still screaming. Pass him a Kinder Egg while attempting to avoid looking nurse in the eye.

Let's recap this cap gas business: pricked toe, blood all over the room, child has an anxiety attack. I haven't mentioned the best part: THE TEST HAS TO BE PERFORMED AT 6 AM. Guess what happens if he's still sleeping and you kindly ask the nurse to come back later? TOO BAD I'M A NURSE WITH MILLIONS OF TOES TO PRICK TODAY.

The problem with Branko's condition is that he didn't actually have a sleep study until nearly five months after he started to show symptoms of extreme respiratory distress. A sleep study in Ontario involves about an 18 month waiting list. To put this into perspective, Branko had a cardiac arrest, and he still wasn't considered a priority candidate for a sleep study. It took another episode of lung failure a few months later before a doctor finally said 'I think we need to get him in for a sleep study.'

It was only after the sleep study was performed that doctors were able to get a clear and accurate picture of how his carbon dioxide levels were fluctuating overnight (kindly measured using a painless method, instead of a toe poke). After this, his level of care changed. He was able to go on BiPAP, and more importantly, his care was taken over by a brand new team of doctors. This new team is amazing. In addition to being great doctors, there were no shoulder pads in sight, and they all immediately noticed the vintage Michael Jackson doll by Branko's bedside. (Phew).

A doctor is only as good as the resources made available to them. Yes, Branko sometimes has clear lungs, something that can easily be confirmed with a stethoscope. But his more serious, underlying condition is very tricky to diagnose. It took a great deal of fancy technology and resources in order for him to get the care he needs. And unless I have any good ideas on how to improve fancy medical technology, I'm going to shut up entirely about doctors**.

*Thank you, Ontario Health Insurance Plan. Are we cool? Please don't be mad at me. 
**Well, maybe not exactly 'entirely.' But I will definitely make a pretty decent attempt. At least for today.

Saturday, December 6

Gift

Last year at around Christmas, Branko started to get sick. It wasn't your run-of-the-mill virus involving boogers, humidifiers, and late night snuggles. This was a bit different. He was lethargic in the truest sense of the word, becoming more and more difficult to wake up from a deep sleep. His skin was pale, he wasn't eating, the doctors kept saying he was okay. "His lungs are clear." I remember hearing our pediatrician espouse those four words, saying them over and over, and I adopted them as a mantra to give me strength. Cold hands? That's okay - his lungs are clear. Constantly asking for a nap? No problemo - his lungs are clear. Generally fussy all the time? It's fine - his lungs are clear. Our doctor said these words exactly 8 days before Branko had a cardiac arrest, conveniently in the foyer of our local children's hospital.


Branko in the hospital on Christmas Day, 2013. Note how Santa isn't actually allowed IN the ICU room. This photo had the caption "First pic with Santa!!!" and received approximately zero likes on Facebook. 

I still haven't really been able to process those first few days in the ICU. I remember being very matter-of-fact about all the medical stuff, nodding politely when they explained that he could have brain damage, asking very specific questions about his catheters, tubes, and oxygen requirements. In my mind I was functional and proactive and helpful, but in reality I was more quiet. My brain was just quiet. I craved simple things that had nothing to do with Branko, like compliments on my hair or discovering a closer, cleaner public bathroom. I wanted attention, but not too much. I didn't want to bother anyone. I started weeping when a nurse told me she didn't mind if I ate in the room. (I was 5 months pregnant). I wasn't overwhelmed; I was just disappointed in myself that I had broken a hospital rule. Stupid, stupid, stupid me.

All I really wanted was for a complete stranger to be nice to me. Maybe buy me a coffee. A complete stranger to say, hey you sitting there all alone, I've been where you are and I conveniently have a crystal ball that told me your son is gonna be fine, and here's five million Grande Americanos. Sitting there, listening to the beeping and the hums of the breathing tube, hoping that I finally might be able to trust the opinion of a doctor once again, I feared I was never going to get over this one. I feared I was going to spend the rest of my life hating every stranger who didn't buy me a coffee.

It has now been one year since Branko's cardiac arrest, one year since he started using supplemental oxygen 24 hours a day, and one year since the worst moment of my life. This is perhaps, the gift I am most thankful for. This was his rock bottom, the moment when doctors finally started to take his condition more seriously. This was the official start of celebrating every single tiny thing that was simply not terrible. Branko was intubated in August during an RSV pneumonia. We celebrated his successful extubation ten days later. Branko was put on oxygen and BiPAP this year; we celebrate every time his numbers improve or his oxygen requirements go down. Branko had major rodding surgery for his left femur in October. We went home after four days with no complications. We celebrated nurses who don't bat an eye after one of Branko's poo explosions. We celebrated fast IV insertions. Oh my, we celebrated those indeed.

I forgive all the strangers who never bought me a coffee. I forgive you, Dr. His Lungs are Clear, for your false reassurance, for saying that everything was okay, when things were definitely not okay. I forgive you, Dr. Christmas Day, who extubated Branko and then made some serious mistakes with regards to his morphine weaning, causing my son to tweak from withdrawal for 3 days. I am able to forgive now because there are just too many things to be thankful for. I'm sick of being mad at the world. This feels a bit better. 

Wednesday, December 3

Getting a Flu Shot? No? Well read this, you big fat baby

I have a confession: I never used to get the flu shot. In my mind, it was only for people who were over 65, or for kids who were prone to getting really, really sick. About 6 years ago, after a super late night out in which I saw the sunrise, I got the flu.

Conveniently, it was the first weekend of March break, and I happen to be a teacher. I spent the week in bed, thinking that "any day now" the horrible, painful wheezing in my chest would go away. I was very wrong. I did end up feeling much better after about 10 days, but my first day back at work was a nightmare. My respiratory function was so impaired that standing up and speaking in front of the class made me feel winded. And I am, compared to some, a very healthy person.

I think about how shitty the flu made me feel, and then I think about Branko. With the respiratory issues that he has, he probably feels mildly shitty most of the time. When he gets sick, his lungs take a huge hit. His skeletal dysplasia makes it very difficult to expel any fluid that accumulates in his lungs. If he were to get any form of influenza right now, his chance of surviving would be very low.

Okay, back to the flu shot. Um, why doesn't everyone get one? Why is this still a debate? I understand that some people are just plain lazy and selfish. THAT'S FINE. I used to be one of these people (see above). Now that I have a child who could be in big trouble if he gets sick, it is now my mission to convince some of the lazy, selfish, people of the world to get the flu shot. If you simply don't care about my child/children/people in general, you might not be interested in the rest of this post. Go ahead and carry on with your weekend activities like brunch and pen-palling with Neil deGrasse Tyson.

THINGS A WHINY PERSON MIGHT SAY ABOUT THE FLU SHOT:

1) "Wah-wah! But I'm a 36-year old baby... won't the flu shot make me feel sick?"

Yes, and no. There is always a chance that an attenuated virus will cause some symptoms of the illness to which you are being vaccinated against. BUT (listen up, this is important!) you will not actually develop RESPIRATORY symptoms from the flu shot. These symptoms include shortness of breath, coughing up garbage from deep inside your lungs, pale skin, cold hands, etc. Milder symptoms such as headache, fever, vomiting, and body aches are pretty effing shitty, but you aren't gonna end up in the ICU. Most of these symptoms, if you even have them at all, last only a few days. Guess how long the flu lasts for a HEALTHY person?? Oh, about 2-3 weeks.

2) "But so-and-so got the flu shot and they still got sick like, 10 times last year!!!!"

Yes, this is another possibility. But guess what, smartie pants? OTHER VIRUSES EXIST. Sorry. There is no such thing as a universal shot that will protect you from every nasty respiratory virus. However, the flu shot will actually do two amazing things: 1) If you do end up getting the flu, even with a flu shot, the severity of your symptoms will be much less than if you didn't get the shot, and 2) The flu shot can actually offer some protection from other viruses. The bottom line: people that get the flu shot will tend to get sick fewer times during the cold and flu season*.

*How many published scientific papers do I have to back up this last point? ZERO. Yes, I dared to write a statement based purely on anecdotal evidence. SOUND FAMILIAR, JENNY MCCARTHY?Pretty much every pediatric nurse who I've discussed this with (off the record) agrees that people who have gotten the flu shot are less prone to both respiratory and intestinal viruses.

3)  "I am a precious flower who never gets sick, so why would I even bother getting a flu shot?"

Groan. Oh, you never get sick? That sounds so nice. Please tell me all about that in great detail sometime. My son doesn't get sick very often, but when he does, he goes straight to the ICU for a couple of weeks. Do you know how not-fun being in the ICU is? I promise you, it's not Canada's Wonderland. It's not even Marineland. It's a shitshow with a capital S. A long ICU stay involves not sleeping, eating, or showering regularly. It involves not seeing the other parent/your partner AT ALL because you are usually there in shifts. It involves taking unpaid time off work. It involves exposing your other children to nasty viruses in the hospital. It involves missed appointments, cancelled dinner plans, and $20-$30 per day in parking. There are always great moments, like when your son eats 5 chocolate bars in a row, but it's usually pretty terrible.

IN CONCLUSION: Don't be one of those omigawd-I-never-get-sick-cause-oregano-oil people. This is how silly you look when you argue against the science: