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.