Archive for the ‘More Medical Maelstrom’ Category

I have a few more posts coming in my relationship series, but I need to put them aside for a bit while I figure out how to proceed.  Like I said earlier, the posts aren’t writing themselves, like I’m used to, and with V being sick I simply can’t focus like I need to on such a touchy topic.  So you guys will just have to suck it up and wait.  Bloggers prerogative and all that.  Sorry.

So, Christmas.

Yeah… that was interesting.

We did end up successfully doing our 12 days of Christmas with Vista.  It worked well and allowed her time to process each toy.

We still had a few presents on Christmas morning and then her stocking.  That took 3 hours to open everything, but we let her go at her own speed.  Even that, though, was too overwhelming and she was pretty much in constant meltdown from noon on Christmas day on.  By the time she went to bed that night Bil and I were completely done in.  In a serious way.  I think next year we might just skip Christmas day, altogether.

The 26th we briefly considered hitting the Boxing Day sales, then came to our senses.

Bil’s assesment of the day ahead:

He was kidding…. I think…

After spending the morning dealing with cranky mccranky pants (aka our daughter) we figured the sooner we headed over to my parents the sooner we could make them look after her and we could sit and have a break.  Cause we’re awesome parental units like that.  So, we packed up the big pickup truck *cough* rednecks *cough* and hit the highway.

Vista had a bit of a cold and cough and we had another croup flare up in the days before Christmas.  We decided we would take her into our family doc in the new year as this is her 3rd go round with ‘croup’ in a month in a half.  Vista, however, had a different plan.

As we left our house to make the hour drive to my parents house when Vista started coughing…and coughing… and coughing… and oh fuck… she can’t catch her breath.  Do we pull over and call an ambulance or gun it to the nearest medical facility?  We veered off the highway and took the back roads the Urgent Care facility in the next town.

As we rushed from the truck into the medical center, Vista’s cough had slowed enough that she was at least not blue tinged anymore.  I had flashbacks to my own experiences with croup as a child.  These coughing attacks were eventually diagnosed as my signature asthma attack.  Yay genes.

And we walked into see a huge line of people.  Crap.  The debate.  Head back to the hospital ER in our town, stay here, or take her into the Children’s hospital in the city.  We decided to take our chances and wait it out here. I called my mom and told her we’d probably be a bit late for dinner.

However, when you walk in with a coughing child with dropping pulse-ox stats a funny thing happens.  You get bumped to the front of the line and get to see a doctor right away.  Two inhalers and instructions to follow up with our family doctor later and we were on our way again.  So much for making it through the holidays without a visit to emergency.  Vista is nothing if not consistent.

When we finally got to my parents house, my dad took Vista and my mom went and made me a stiff drink.  Because there are some days when it’s required and my mom, for all her quirks, gets that.

My youngest brother and his wife finally arrived with my nephew (how we can come from an hour away AND stop at emerg and still get to my parents house ahead of them when they live in the same neighborhood as my parents, I’ll never understand).  I had the sad realization that my nephew who’s now a year and half old isn’t a baby anymore.  *sniff*  He’s completely lost that cute, chubby, baby look and marched straight into toddlerhood.  I told my SIL that she needed to get with the program and have another baby for me to cuddle.   Because, really,  we all know it’s always all about me.

After required snuggles, we let the kids open their presents from Grandma and Grandpa (or Manna and Putta as Vista prefers to call them.  We’ve tried to correct that.  And she can say it properly.  But she’s adamant about those names.  *shrug*).  Can we say spoiled?  I think my parents went and won the lottery and forgot to tell us.  They even got Vista a gift certificate to the high end shoe store where we have to get her footwear, so her next pair of shoes are completely paid for.  Yeah, I may have teared up a bit over a gift certificate to a shoe store.  Just proves that I’m sensitive.

Heading back home in a semi-turkey induced-coma, we had to pull off on the highway again after V had another coughing / asthma attack.  Nothing wakes you up and gets your adrenaline pumping like your kid having trouble breathing.  Thank goodness for rescue inhalers.  But since then, she’s been good and we haven’t needed to use it at all. So, yay the inhalers are working.  Boo that they’re probably working because she has asthma.

All in all a good Christmas.  But really?  I am SO ready for a holiday now.

I’ll leave you with this daily dose of cuteness… Vista the ballerina (oh, and yes, she insists on wearing a toque in the house at all times.  And usually mittens too.  We got her to take off the mittens to open presents, but the toque?  Not a chance.  I promise you, we keep the heat on in the house.  Really.)

People who don’t use Twitter don’t get Twitter.

It’s a powerful beast.

And I’m not even talking from the ‘social media’ perspective.

I’m talking from the perspective of a mother.

The day Vista managed to get a huge sliver in her finger that I couldn’t get out , I mentioned it on twitter and immediately had a dozen suggestions on different tricks that might make it easier to remove.  And it worked.  Sliver removed without crying and fuss.

The day we took V to the hospital for yet another round of gastro issues, I twittered it.  I was overwhelmed with support from mom’s who had been there with their kids.  Who walked me through different meds.  Who twittered me about different procedures the docs might suggest and what they all meant.  The pros and cons of each.  They offered phone numbers and then sat there on the phone offering support while we waited to be seen in the ER.  And most people just offered support, good thoughts, prayers.  All of which meant so much.

On Monday night of this week when I mentioned V had spiked a sudden fever and a cough, Dr. Twitter pronounced it Swine Flu and advised me to get some Tamiflu for her.  I should know better than to doubt the all powerful Dr. Twitter.  I put it off til she got worse on Wednesday.  Took her into the local ER and walked out with our Tamiflu prescription.

Then yesterday afternoon, I mentioned on twitter the wheezing when she was breathing and the barking sound she was making when she cried.  Several experienced mom’s popped up to tell me Vista had croup and I should take her in.  I brushed it off, attributing the symptoms to the flu (yes, silly me…. I’m a slow learner).

Later that night, after V decided to drop a soup can on her big toe (why yes, it’s been the week from hell.  Thank you for asking), the first place I went was twitter.  I was informed by the Mom’s Who Have Been There Done That that the toe would need to be x-rayed and then the nail would probably need to be punctured and drained.  Guess who was right again?

We bundled up Vista, took her into the ER.  The nurses took one look at her and said “She has croup”.  We explained that we weren’t actually here about that.  That we figured it was probably the flu and we were actually here to have her toe looked at.  After they picked their jaws up off the floor we were informed it was lucky we brought her in because of her toe.  The wheezing (stridor) we were hearing when she was at rest was NOT a good sign in terms of croup.  The doctor refused to do anything about the toe until the croup had been looked after for fear of getting her upset and sending her into respiratory distress.  So she was plied with steroids and popsicles to take care of the croup.  Later, as per the Twitter consensus, her toe was x-rayed (verdict was no visible break) and after a quick puncture of the nail we were on our way home.

Time and time again, my friends on twitter have been there for me.  With advice, recommendations, personal experience, and support.   I have learned that doctors give you REALLY funny looks when you say “My twitter peeps think this is the issue”, especially when it turns out they’re right on the money.  But I have learned to turn to these people first.  They are my rocks.  My support.  They are what keeps me going when I just want to sit down and give up.

So, to     

• 1mcmommy
  
• 2princessmama,
• adil320
• agentninety9,
• ali_rn,
• AmyElk,
• angelia_t,
• antibob,
• arosefull,
• ashryel,
• avasmommy,
  
• BOREDmommy,
• bostonmama79,
• carareed,
• Deidra23,
• drlori71
• eatplaylove,
• EverythingMom,
• heartmychloe,
• heathersebi98
• hereslizz,
• irishsamom,
• Issascrazyworld,
• Jenners26,
• justwaiting
• KarenVazquez,
  
• Kekibird,
• KnowMeLoveMe
• knoxvillepixie,
• ladybugsgrama,
  
• Letstalkbabies,
• Lgibson79,
  
• leighish,
• Leprakans,
• libertygirle,
• lukahsmom,
• LYIS,
• mamaspeak,
• masmom,
• Messponential
• mom23greatgirls,
• MomtoBrady
• Mom2HandR
• mom2snk,
• MommyMelee,
• mommywantsvodka
• movinandgroovin,
• MyBottlesUp,
• newfiehun,
• pbandjazz,
• playgroupie,
• pocklock,
• PsychMamma ,
• rewritingkel,
• sara3isenough
• TheRantingMommy
• TheRealBecks

To all those amazing people who are constantly there for me, there’s only one thing I can say.

Thank you.

I’m doing the happy dance right now.

We finally got the call today that Vista’s been assigned to a neurologist and we go meet with him on Tuesday (Aug 11). It will be so nice to finally get some of our questions answered. Like could her hydrocephalus be affecting her balance. Should we be concerned about her seizures. Are their any concerns about her bumping her head due to the existing hydrocephalus and brain malformations.

This appointment has been a long time coming. We’ve known since Vista was 6 months old that she had a neurological issue. It took us until she was 18 months to convince the doctor of that and get him to order the MRI. We finally got the MRI in March, results in April and have been waiting, waiting, waiting, since then to get into see a neurologist.

As much as I love the free (most of the time) health care in Canada, if we were in the US we would have seen a specialist months ago. So, say what you will, but give me the option of private health care.

I thought my first post back after BlogHer@Home was going to be a wonderful “we had such a good time, thanks everyone, thanks sponsors” touchy-feely post.  I did sit down to start writing one this morning.

Yeah, that was before my morning turned to crap thanks to a doctor who has her head so far up her ass I’m sure she can see her own tonsils.

A bit of background here.  (And if you don’t like TMI, skip this paragraph).  Vista suffers from chronic constipation and, unfortunately, sometimes her bowels get completely blocked and back up into her stomach, which then causes her to throw up.  A lot.  The past couple weeks we’ve been trying again to slowly ween her off formula and onto rice milk.  The previous two times we tried the switch resulted in a bowel blockage, so we were trying a very slow introduction this time.  Well, it didn’t work.  So we’ve been dealing with a bit of puking the past few days while we get her sorted again.

So… on to idiot doctor story.  We were supposed to have an appointment with Dr.C today to have some assessments done for Vista to try and access some resources in the big city that aren’t available to us, living in a small town.  Half an hour before we were to leave, though, Vista started throwing up.  So I called the doctors office and apologized profusely saying “I’m so sorry.  I know this is short notice, but Vista is throwing up, so there’s no way I can make the hour drive into the city.”

No big deal, right?  Yeah, you would think.  Well receptionist puts me on hold and Dr. C gets on the phone.  I start explaining how sorry I am that I can’t make it in.  But driving with a puking two-year-old is out of the question.  The doc quickly cut me off and what she said next made my blood run cold.

“I don’t think you understand the importance of this appointment.  If you miss this appointment no one is going to want to help you.  And quite frankly, I am deeply, deeply concerned.  It is critical that you make this appointment today”

<insert me trying, once again, to explain the logistics of a one hour drive in a hot truck with a puking child>

“You have a decision to make.  If you decide not to attend this appointment, then I have no choice but to discuss this with **** {the other person we were meeting with to discuss available resources for Vista} and I really feel we’ll have to contact Children’s Services about this.”

<insert me spluttering going ‘Excuse me???? Children’s Services???  For WHAT???>

“You are obviously in denial and I am deeply, deeply concerned.  If you decide not to make this appointment then it shows your refusal to get help for you and your daughter and I feel that Children’s Services will need to be informed”

She signed off the call by telling me that there would be a $50 cancellation fee and would I like to be invoiced for that.

I hung up the phone and promptly started sobbing hysterically.  She was going to call Children’s Services on me??  WTF?  Was I not the mother that stayed by her child’s bedside every night in the hospital?  In fact I’ve never spent more than 6 hours (and never a full night) away from my daughter.  Was I not the mom who pushed the doctors to properly diagnose and treat my daughter’s reflux?  Am I not the mom who’s spent the past year working with specialist of every size, shape, and description working to make sure that all Vista’s milestones are met due to her developmental delays?  Am I not the one who pushed and pushed and finally got an MRI ordered that proved we were right in our suspicion that she had some brain issue causing her delays.  Yeah… And yet you want to call Children’s Services on me?  FOR WHAT?  Fuck you bitch.

We’ve had just recently started the process of switching to a new doctor  (an easy 5minute drive, rather than an hour on the highway).  This new doctor is amazing.  We first met him in the NICU after Vista was born.  He was our favorite resident. So when he told us he was going be starting a family practice in our small town, we were elated.  Unfortunately, due to various factors, that took 2 years.  He’s still managed to see Vista a handful of times over the past two years, and is always great with her.  He also has a background in neuroscience, which is a huge plus for us now with her mid-line brain issues.

So after today’s phone call, I called his receptionist and explained what had happened with the other doc.   My mom came with me and watched V, while Dr. F took his lunch hour to sit down and chat with me about what had happened.  As soon as I mentioned that Vista had been throwing up, he stopped me and asked “Is she OK?  Do you want me to take a look at her?”  I must have looked surprised because his next question was “Didn’t the other doc ask if Vista was OK?”  I realized that at no time had my other doctor even inquired if Vista was alright.  She had absolutely no interest in anything other than us making that appointment.  The reason for this became abundantly clear when Bil called old doc and told her to transfer all our files to Dr.F and the first thing the bitch starts in on is a schedule of fees.  It’s all about the money with her.  Nothing more.

Dr. F listened, took notes, and assured me that I had nothing to worry about.  He had watched Bil and I advocate for Vista in a variety of arenas over the past two years.  If anyone called me from Children’s services I was to direct the call to his office and he would take care of it.  It was so amazing to feel listened to.  Once we were done he walked with me out into the waiting room.  Mom and Vista had gone out to walk around so he grabbed his shoes and told the other patient in the waiting room “Sorry, I’ll be right back.  There’s a little girl I have to say hi to”.  Once we found them, he immediately knelt down to Vista’s level and started talking to her about the flowers she had picked (I don’t even want to know from where) and how pretty they smelled and how they matched her shoes.  He is just such an amazing doctor and we feel so lucky to have found him.

Two doctors. The same medical program from the same university.  One is all about the money.  The other is all about the patients.  Take a guess  who will never see a red cent from me or anyone I know.

*addendum: I’m really, strongly considering filing a formal complaint with our Health Region.  I feel this doctor tried to bully me into an appointment when it was not in the best interest of my child.  Threatening a mother with Children’s Services is just low.  And slimy.  And something no RESPECTABLE doctor would do. *

For those trying to keep up with the latest progress/diagnosis/prognosis of Vista here’s a short (OK, not so short, but when is anything I ever say short?) update.

If you’re not interested in the whole mommy/kid/doctor/diagnosis type thing then move along, this is not the post you’re looking for.

Background

Vista was born 4 weeks early and spent a week and a half under UV lights for jaundice, due to a ABO blood incompatibility between her and I. She also had an infection for which she was on IV antibiotics. Otherwise, she was a very healthy baby.

In The Beginning

We first started noticing issues when Vista was about 3 months old. She wasn’t as flexible as most babies (she couldn’t bring her feet up to her mouth to chew on, for example. Which, quite frankly, I was OK with, because really? Eeeewwww. Feet. Even if they are baby feet, which are all cute and everything, but still…chewing on your feet?). Then we noticed she couldn’t sit up like other babies, and she wasn’t babbling either.

Around this time she also became a colicky baby. If you’ve never had a colicky baby, count yourself lucky. I can remember telling my husband one day “I understand, now, how shaken baby syndrome happens. I don’t condone it, I would never do it, and it should never happen, but I understand now how a parent on the edge already could reach the breaking point so quickly when you’re with a child who cries 24/7″. There were a few times where I had to lay her, still crying, in her bed, and step outside for a few minutes to regain my sanity. But I digress… She was colicky, which was eventually diagnosed as reflux. This coupled with an eventually discovered milk allergy made for lots of fun the first year.

By a year old, though, we were starting to see more developmental delays. She still wasn’t crawling or even really rolling over much, so we managed, through our Public Health Services, to get a referral to the Early Intervention (EI) group. We now have our own EI child development specialist, physiotherapist, occupational therapist, and speech pathologist that work with Vista a couple times a month to keep her caught up on her milestones.

But we still felt there was something more going on. This was confirmed when she started having mild seizures. Her pediatrician sent to referrals to the neurology department at the local Children’s Hospital. They refused to see her both times. So we finally convinced her pediatrician to request an MRI, himself, after an EEG came back normal.

MRI Results

Even though we were expecting the MRI to show something that would explain the delays, nothing prepared us for the words “There was abnormal results on the MRI”. The next half hour passed by in a blur as we tried to take in and understand the flurry of medical terms that were being thrown at us.

“…brain malformation…”
“…absent septum pellucidum…”
“…thinning corpus callosum…”
“…hydrocephalus…”

Wait! Hold the boat! Did you just say my daughter is missing part of her brain?!?

I looked over to where Vista was sitting reading a book with Bil in the doctor’s office. She looks normal. How could this beautiful little girl be missing something in her brain. I couldn’t comprehend it.

We still don’t really know, at this point, what the ramifications of these issues are or will be. We’ve been referred to a neurologist (again) and hopefully will have more answers once we meet with him. The tricky thing about a missing septum pellucidum is it’s never the only issue and it doesn’t cause the issues you see in a child. Most cases of people where their septum pellucidum is missing, also have a malformed optic nerve that also causes blindness or other visual issues. But we’re not seeing that with Vista. So, at this point, we suspect that her delays, reflux, constipation, and seizures may be due to the thinned out corpus callosum. But all that’s just conjecture until we talk with the neurologist.

In the mean time, we’ve also consulted with a geneticist. They are running a bunch of tests to see if they can pinpoint the cause of the delays from a genetic syndrome point of view. So, they’re hoping to rule out Fragile X, Triple X, and other things like that. Or rule them in, as the case may be. At any rate, we won’t have results for a while…up to three months.

That’s OK. We’re really good at waiting these days. Vista’s almost two. We’ve spent almost two years fighting the system to prove that we’re not just neurotic parents and that there was something really wrong with our daughter. Three more months? Yeah, we can deal with that. At least, now, things are being done, and doctors are listening to us. And more importantly, we’re able to get Vista the help she needs to be as normal as possible.

Some things we’ve learned over the past two years:

• Parents know best. If you feel there’s something wrong with your child there usually is.
• The only person who’s going to advocate for your child is you
• Don’t be afraid to question the doctors and ask for clarification.
• If you’re not comfortable with the ‘wait and see’ approach the doctor is taking, say so. Ask for different tests, more tests. Quite often they won’t suggest it.
• Don’t back down. When you’re told you’re just a neurotic parent, that your child is fine, that you’re putting them through tests for nothing. If you truly believe something is wrong, pursue it.

The part that really scares me about this whole thing is, how many kids go undiagnosed? How many parents, when told they’re just hyper-vigilant, back down and just accept that. I suspect more than fight to have their child diagnosed. If we hadn’t fought, we would have probably never found out about her brain condition and we’d just have a child who was labeled as ‘slow’.

Makes you have a lot of faith in the medical system.