Sunday, January 11, 2015

Happy New Year!

First some cute pictures...

 We went to the Science Centre on December 31st to celebrate the New Year.  Both girls love the water table.

I love the water flying around in this picture.  For some reason, both my children (and Gavin's legs- he is holding Zoe in the upsee) got totally soaked!

... and then an update.

Zoe's Discharge, IV antibiotics and Port Problems

Turned out Zoe had RSV (a respiratory virus) as well as a bladder infection.  And of course, the bladder infection was a funky bacteria that is not as common in urine.  AND Zoe is allergic to the only oral antibiotic that could treat it.  Despite past reactions to this medication, we went ahead with pre-medicating Zoe with anti-histamines and tried a dose of the medication in hospital.  Zoe had a reaction- very itchy, irritable and her chest sounded tighter to the doctor.  Now we know she is definitely allergic to that one.  Which knocks out another class of antibiotics and makes Zoe all the more tricky to treat.  In regards to this bladder infection, it means it had to be treated with IV medication.

We went home on Wednesday with plans to continue the IV medication at home through Zoe's port.  All went well on Thursday and Friday.  On Saturday, the nurse was not able to get blood out of the port which meant she could not run the antibiotic.  We tried moving the needle a bit and I even reinserted a brand new needle.  None of these usual tricks worked so we packed Zoe up to head to the hospital.  Besides needing her antibiotic, having an issue like this with the port meant Zoe needed to be seen.

7 1/2 hours later, we finally left the emergency room.  We still could not get the port to work and an X-ray shows that the port might actually be broken or out of place.  They were able to get an IV in Zoe's hand so we were able to get her medication in to her.  We were given the option of waiting around in hospital until the specialist can do something about the port which probably would not be until Monday at the earliest or going home.  We opted to go home.

So What Does It Mean?

The problem with the port not working means one of two things is going on:

1- the port is truly broken and needs to be replaced.  This means Zoe would have to have surgery to remove the old port and insert a new port.  It also means that in the mean time, we do not have good access for Zoe if she gets sick.  Which means we would not be able to give her the drugs that she would need in order to stay alive.  So obviously, getting the port working is a priority.

2- there is a blood clot (or clots) either in the port or in the line somewhere.  This is not a good thing. The blood clot could break off at any time and go to her heart, brain or lungs.  None of that is good.  Last time we had issues with the port, they gave Zoe a clot busting medication and that worked.  So we would have to return to the hospital for this medication.  The medication has some possible side effects (some of them serious) but the risk of the medication would be less than the risk of a blood clot travelling around Zoe's blood stream.

We will hear from the team (hopefully Monday) about what they think is happening and the plan.

We Are All Tired, Tired, Tired

Several people in the emergency room asked us how we are doing.  They have seen us a lot lately and are always very supportive.  Gavin worked in the emergency room before he got the second meningitis.  So he knows a lot of people there.  Some of these people have been there to literally save our daughter's life.  So they have a glimmer of knowing what we go through.

Our response is "We are tired."

We are tired of being in hospital.
We are tired of seeing our child go through this.
We are tired of seeing our child in pain.
We are tired of making decisions.
We are tired of not sleeping.
We are tired of all of this.

But other than that, we are good.

We are good because:

Zoe is doing ok.
Zoe is safe.
Zoe is home.

For the moment.

Genevieve's Health

I have been struggling with my own health issues.  I have been taking hormones to treat my endometriosis and despite doing everything I can (I have been dieting and exercising for the last eight months. I lost 29 pounds, 29 inches- oestrogen is stored in fat cells so this should help lower my hormone levels) I was bleeding again this month (sorry, brothers- not what you want to hear about).

I used to treat my disease naturally- with exercise, good diet, acupuncture and rest.

4 years ago that all changed.

4 years ago Zoe almost died for the first time.

4 years ago we realised what the team had been saying all along about Zoe's medical fragility just might be true.

3 years ago life turned upside down and then upside down again-

Gavin had his reoccurring tumour in his spinal cord followed by two bouts of bacterial meningitis.

2 years ago I realised i could not do all of this and keep going.

And so, I started on medications to treat my endometriosis and to help bolster my mood and improve my sleep.

Because living like this makes it nearly impossible to take care of myself and do what I need to do in order to get better.

I started back at work.  Lasted two months.  Then Zoe got sick and almost died...again.

And so, here I am again in middle of a hormonal, physical, emotional crisis.

Just making it through the day.

One day at a time.

Tuesday, January 6, 2015

Two Quotes from the Day

After spending the last two nights at the hospital with Zoe, I came home today to spend some time with Ailsa.  We had a great time hanging out, taking a bath, playing, etc.  My two favourite quotes from today are:

I had bought an ice cream cake for Ailsa and me.  Ailsa kept thinking it must be someones birthday but I explained I got it just because I knew she would like it.  She asked if there was enough cake for daddy and Zoe and I assured her that if we ate all the cake, we could always get more when Zoe gets home or even make her a cake.  While talking on Face Time with Zoe, Ailsa said to her, "Zoe, we are going to make you a cake." Then she put her finger to her lips and made a shushing noise while saying, "But it's a secret!"

Ailsa and I were playing with her new magnetic mermaid and ballerina dolls/ figures just before bed.  I suggested we get the mermaid and the ballerina ready for bed.  Ailsa was in charge of dressing the mermaid who had all sorts pretty and form fitting outfits.  She said, "Oh, good idea mom.  Let's pick out some compy (Ailsa still says a p sound instead of an f so comfy sounds like, comp-py) cozy clothes for them."  After searching through the clothes, Ailsa said, "I don't think this mermaid has any compy clothes, they are all kind of tight.  Why wouldn't they give her any compy cozy clothes?"

Monday, January 5, 2015

You Have to Just Laugh

Ailsa and I spent most of Boxing Day (for the non-Canadians that is the day after Christmass) in the emergency room because despite being on antibiotics for 5 days for a double ear infection, she was still spiking fevers close to 40C (for the non-Canadians, that is really high).  We could not find a good walk in clinic open on the holiday so off we go.  It was an insane day in emerg and in the end it was what we suspected- some sort of viral illness that has to run its course.  The doctor was concerned enough that he did a chest X-ray but thankfully, no pneumonia.

Fast forward three days and guess who starts getting sick.  Actually I was also sick and lost my voice but hey, who cares about me right?  Let's face it, for the three people who actually follow this blog, you do it to see cute pictures of the kids!

Fast forward six days and we end up in the emergency room with Zoe.  Turns out she has RSV as well as another bladder infection.  So this is where the laughing part comes in: a few of the emerg staff are the same people who worked Boxing Day, and the ones who had said, "I am so glad it is not Zoe who is sick" now said, "Damn."  And while the emerg was crazy on Boxing Day and we waited 7 1/2 hours to see a doctor, Zoe is seen within minutes.

Ailsa gets so concerned about Zoe that she becomes rigid in her routines, cries if I am out of her site and clings to me (even while I am on the toilet).  My heart breaks.  We saw a doctor for Ailsa just to confirm we are doing all we can to support her.  And yes, we are.  In fact, the doctor is very impressed with Ailsa. No surprise there, we already knew she is amazing.

And so, the laughter has to kick in.  When Gavin and I notice some swelling in Zoe's face indicating third spacing and her oxygen levels dip, we say, "oh well, if Zoe gets really sick and goes to the ICU at least we can use the nice family room and get free breakfast.  And as Ailsa cries, "mommy, where are you going" as I travel the five steps it takes to go to the bathroom in Zoe's room and proceeds to follow me in and hang from my neck, I find myself getting irritated.  (Which is an easier emotion than feeling incredibly sad).

And so, I chose laughter.  Because there is nothing else I can control right now.  So if you see a crazy woman in PJs wondering the hospital halls, hoping to get a cup of coffee before her daughter launches herself out of bed, laughing to herself- have no fear, it is just me.  Living in the moment.  Cherishing a hot cup of coffee.  Now if only I could get to drink it while it is still that's the tits.

"Everything can be taken from a man except one thing- the last of human freedoms: the ability to chose one's attitude in any given set of circumstances."  Viktor Frankl