28 September 2012

Waiting

I have heard time and time again how much people hate waiting, from the line at the supermarket to the package from the postal carrier, even "waiting" for e-mail to download, people expect instant gratification. True patience is rarer than an albino grizzly bear, more precious than the rarest gem.

And I will admit, I am hardly innocent - I get impatient, I feel my issues/needs/concerns should be the most important thing in everyone's life... not only my own.

I think of it as the Veruca Salt Phenomenon... Or if Willy Wonka doesn't suit you - let's call it the Freddie Mercury Effect... "I Want it All, and I Want it Now".

Sure, patience is a virtue, we all know that. We have heard the old platitude "good things come to those who wait", but really... what good is waiting anyhow?

Well... Picture this. Your 4 year old has an ear infection, it is 11pm and you want to make them feel better NOW, because between the late hour, the incessant whining, and your parental instinct to fix the boo-boos, you can't imagine waiting until morning - so you take him to the ER. Needless to say, you are not the only parent who has resorted to this avenue of care, and are ushered to the waiting room to mingle with all manner of running, coughing, dripping, hacking pestilence (what, this surprises you?).

You sit, and wait, and wait, and wait... and try to guess who arrived before you and in what order by the stress level of the parents. You figure that you must have been waiting hours, but because of the odd force fields that surround ER waiting rooms, your watch has only moved forward 15 minutes. You start to get antsy, then irritated - can't these people see that your child is suffering terribly, over there giggling and playing with those toys?

Let's take a quick peek at what is going on behind the closed doors in the innER sanctum.

Look to your left. That is an 8 year old boy whose appendix may or may not have ruptured. He is waiting to be taken to the OR and would be terrified if he wasn't so sick.

Beside him is a child who had an accident at school and they are still putting him back together hours later.

In the corner, behind the closed door, is a toddler undergoing chemotherapy who spiked a fever. She is waiting, too, but because her treatment has robbed her of her immune system, she has to wait behind closed doors, without the toys or books that your child has access to, because even they can make her sick.

That kid in the back, he has been here over a day, alone. He is the victim of abuse and has been taken from his parents. He must have his injuries tended to before he can be transferred into the foster care system.

What is the sound behind us? That, my friend, is the sound of a scared young mother who just discovered her week-old infant has a severe heart defect and requires immediate surgery. A woman who has barely had the chance to try on the cowl of motherhood and she is terrified it'll be snatched from her grasp.

Back in the waiting room, another child has come in, and is immediately ushered into the back for a bed. This is another example of triage - this child is in need of immediate assessment and care - and of why you should be thrilled that you have to wait.

My child is the child hurried in - the child who has the professionals hovering within moments of arrival, or waiting for us to get her there. I miss the days we waited, the days when I was bored in the waiting room, considering maybe even going home and toughing it out overnight to get in to the regular doc in the morning.

When you moan about how long you have waited, or how slow everything was, be thankful you had to wait.

True crisis tends to move a whole lot faster.

- Posted using BlogPress from my iPhone

27 September 2012

Silent Partner...

One thing we learned last year after Brigid missed essentially the first 3 1/2 months of school was just what a special place she had landed in for her education.

Like last year, Brigid will not even cross the threshold of her school until after Thanksgiving, but unlike last year, now we KNOW that our suspicions about what she is really capable of are true.

Now, if you are a regular reader of this blog, then you know how I feel about her school, and the phenomenal people who have been called to work with our special children.  Brigid accomplished more under the wing of M and A in that classroom and J and R from a therapy standpoint than the "professionals" who write reports and read crystal balls ever thought she would, and she did it even after missing nearly half of the school year because she was hospitalized...

I have heard that we "rush" Brigid back to school, that we "push" her when she should be resting, that we need to "take it easy on her".  That, my friends, is unmitigated poppycock.  Anyone who has ever seen Brigid in person, who has had the chance to spend a bit of time with her, especially in the hospital, knows that this child is the antithesis of "rest and recover".  First, she is "sick"... and when she is "not sick" any more (the therapy has started working and she has the energy to sit up) then she is a going concern.  It is this activity and curiousity that we nurture, by having her in a supportive but challenging school setting, by getting her active and involved as early as possible in the hospital, by letting her activity level guide us - within reason, of course.

What makes us especially lucky, is that Brigid's school recognizes this too... I was contacted by the principal when she learned how long B was going to be here asking what the school could do to support her from a distance.  I shared my concerns about how well B had done once she finally was able to attend regularly last year, about how much she was missing, both in content and structure, and how I wished she was not stuck here.  Within an hour, Dr. S called me back with a solution!

The team (and there were a lot of people who took the time to contribute to this, many I will never have the chance to thank personally - so... we owe you one!) decided how B was going to be supported from a distance... A laptop computer was set up for Brigid, with work appropriate to her educational level and within the curriculum... additional activities were added, games like Bailey's Book House, Sammy's Science House and Millie's Math House were put on it too, because A remembered what B loved from last year - this was set up to encourage Brigid to want to use it - and it WORKED!!

Not only did they put all this together, but A, EA extraordinaire, even took her own personal time (and gas money) to bring the computer and assorted bits and bobs, AND some special artwork from Brigid's class, all the way to London for Brigid.

While the English language has a whole bunch of cool words, it seems to lack words with sufficient power to convey our thanks.  We owe you so much - you found the bright little girl that we always knew existed... and you brought her out to share with the world.

Even if you DID make it easier for me to be a mean mommy and make her do homework on a Sunday...


homework

Oh, and just on the off chance that anyone was curious... we have a date/time for Brigid's next set of procedures.  B will be having the new tunneled central venous catheter placed and her lumbar puncture etc. done on Wednesday, Oct 3rd at 2:30... provided it all goes well, her last dose of Amphoterrible will be the following day, and then we will be homeward bound. 

Just don't tell B - she has a wonderfully awful way to throw curve balls...


22 September 2012

I try not to count days

but the knowledge of how long we have been here does tend to creep into my head from time to time.

Calendar-Clip-Art-Free_zpsfed3de46

We took Brigid to the hospital in Windsor on August 26th.  On September 2nd, after trying valiantly to get on top if the infection at our home hospital, the docs felt it was best that she be transferred to London for treatment.

7 days

After arriving in London on Sunday, it took until Friday before the microbiology lab was able to identify the specific bug(s) that were hiding out in Brigid's bloodstream and determine the best way to deal with them.

6 days

Once she started on treatment, the final decision for the length of treatment for Brigid that best balanced the likelihood of clearing the line against the negative effect of the drugs themselves told us basically how long we would be here.

28 days

I spoke to the doc a couple of days ago in a last ditch effort to see if they might consider transferring her to complete treatment closer to home.  I was told that because of how unstable she had been at the beginning of treatment - though she has shown significant improvements, she still has a way to go to return to baseline - and the fact that they want to replace her line as close to the end of treatment as possible (it is being done on Day 27 of therapy)... heck no.  Well, I think I might be paraphrasing that one a bit.

Still 28 days

The team doesn't feel it would be prudent to discontinue the meds and show Brigid the door right away, so she will be here for an additional 24-48 hours after the therapy is complete before they are comfortable allowing her to return home.

2 more days

So, if you are doing the math... that makes 43 days.  Just over 6 weeks since Brigid has seen her bedroom, her toys, her "castle".  When she was admitted, we were in 85 degree days and running the AC, when she comes home, it'll be long sleeves and the furnace at night.  We have watched the calendar turn over 2 months "on the inside", missed Daddy's birthday, the first day of school for the 5th year running, the entire first month of school for the second year in a row, the first day of fall.

In 2011, Brigid spent 127 days inpatient, in 2012, we are quickly approaching 100 and are only in September.  These are days right out of her childhood, time that is not given back.  They wear on the whole family, shift the balance in the house completely, and do a number on her.  Not only that, they are costly.  We pay for RMH, food, gas so that Daddy can visit, extra expenses at home because I am not there... not to mention the incidentals that are bound to crop up... this time around, I was expecting a short stay (we were told "a couple of days" when she was shipped out) and brought a backpack... that is it.  One spare set of clothes, Brigid's meds, my computer... and that was all.  Needless to say, you can't go long on that little, so... more expenses.

Some of you have been asking what you can do to help... I did have a donate link at the top right side of this page, but some generous friends who offered to help told me it was not working.  A dear friend of mine took over a ChipIn page I set up for something entirely separate and has made this page for Brigid.  There is a direct link to donate at the top right of this page now, as well.

If you can help, or if you would be willing to share this link with your friends tweet it or post a widget on your own blog, we'd really appreciate it.  Your thoughts, prayers and generosity are what has carried us this far, please keep on keepin' on.

19 September 2012

Sometimes you just have to vent...

I don't want to be here.

I want to see my son and my husband every day.

 I want to watch Brigid hanging upside down from her rope swing and digging in the dirt.

I want to grumble when Brigid tracks mud across the kitchen floor.

I want to hear Brigid's giggle fits when she hangs out with her brother, her "Shining Armour".

I don't want to walk a block before I can lie down.

I want to sit and talk about everything and nothing with the man I love over a glass of wine.

I want to wear the "grubby" clothes

I want to cook in my own kitchen, for my family.

I want to hear familiar beeps and alarms, not the ones that make my toes curl and remind me of "back then".

I want to see "our" nurses, not the revolving door of "have you ever treated my child before, and do you really have ALL the info at your disposal that you need?" staff in a hospital.

I want to scratch inappropriate places without having to worry about who sees me.

I want a hug.

I want to watch the maple in our front yard turn, to pop the bagger on the back of the mower and get mulch ready to winter the gardens.

I want to wash dishes, do laundry and clean bathrooms (well, not this one so much, but I'd rather be home doing it than here).

I want to watch Doctor Who with Reggie over a big bowl of popcorn, and discuss the "finer" points of time travel.

I want to wave goodbye to Brigid as she leaves for her first day of the school year.

I want to see the random notes and paperwork that come home from school every day.

When things are tough, or my mind is going a mile a minute with the "what ifs", I want to have my rock to steady me, to lean on, and to tell me we have gotten through so much, we can get through this.

I want to decorate the house for the fall, to bake and cook and make our home smell wonderful.

I want to make fig jam... but I will not even see my garden in the month of September, and by the time we get back, the figs will be rotten.

I want to be able to send Brigid to her room when she misbehaves. I want to be able to go to mine when I need a time out, too.

I want midnight snacks, to dig around in the freezer and try to come up with something creative to feed the family, to make breakfast for dinner.

I am tired of being strong, I don't want anyone else to ask "How long have you been here? How much longer will you be here?"

I am tired of knowing just how many people "don't know how you do it."

I want to go home.

18 September 2012

Just keep swimming...




This is just going to be a quick update, and please pardon nonsense words and typos because I am doing it from my phone...

The team had a sit-down with the Infectious Diseases doc to discuss the Ampho the other day... to try and come up with the "least worst" plan for treating Brigid through the latter course of this infection. They are still not happy with how the meds are affecting her heart rate and blood pressure (she has been as low as 65/30 BP and 45 HR) and there is an added hiccup of new abdominal pain (and she doesn't normally verbalize pain).

So... ID feels that, despite the fact that "best practice" would be 6 weeks of treatment to be certain the bugs have cleared, the most prudent thing for our little lady is to treat her for 4 weeks and then take her back in for the surgical placement of a new indwelling central IV line in her chest. I have to be honest, I am not too upset by shortening the course... poor little princess is complaining of pain more and more often, and I hate to see her so listless :(

I was so happy to see Daddy on Friday. It was the first time we had seen him since Brigid was transferred here, and we likely won't see him again for another 2 weeks. This separation is so hard on all of us, but with gas over $1.30/L ($5.20/gal) we can't afford trips any more often. As it is, roaming charges on my phone, food and accommodations are hitting us hard financially - being here adds so many expenses, but the regular ones at home don't stop either. There is a "Donate" link at the top right side of this page... If you are able to help, even a little, we would be so very grateful.

Thank you for your thoughts, well wishes and prayers... They do help us get through some very tough times.




- Posted using BlogPress from my iPhone

Location:CHWO, still

11 September 2012

Perhaps if we give it a fancy name...

... "hiatus from home" maybe... it'll make this admission a bit easier to swallow.

In my last update, we were still looking at returning to Windsor by the end of the week.

The end of last week, that is.

We are still here.

Brigid did manage to get a new PICC line on Thursday.  According to the radiologist who placed it, the largest vein in her arm (the best for placement of a PICC line) is "gone", so he had to use one of the 2 remaining smaller veins.  One of the biggest challenges with any sort of central access is that it damages the vessels.  When a line has been in place for an extended period of time, the vessel it is in becomes damaged and is rendered unusable for future placements.  Because of this, the number of placements is finite.  In plain English - we can't play this game forever.  It is not impossible that Brigid could run out of places to put central IVs before she is beyond the need for them, and that could be disastrous.

Friday morning, the Senior Resident called Windsor and told the doc on rotation there that they were going to gear up to send one of their patients back so she could complete her treatment closer to home.

The response that she got, after the doc in Windsor asked who it was and was told it was Brigid was "not today".  No question of her condition, no inquiry about how she was doing or what they had found... just "not today".

A little disheartening, to say the least.  I had checked out of RMH, had everything packed up and ready to go.  I wanted to take my princess back to her kingdom, closer to her castle.  Instead, I had to go back to RMH, beg another room, and settle in.

HOWEVER... it might have been for the best.

Shortly after this conversation occurred, they FINALLY got the ID on the bug(s) that had been making Brigid so sick.  When the big gun antibiotics were used to knock out the bacteria in her bloodstream that took Brigid to the hospital in Windsor, they knocked out all the bacteria in her little body, which allowed some pretty vicious opportunistic fungi to take hold.  Brigid's blood was not positive for one, but 3 different yeast species.  One is pretty common, the second rare, but she has had it before, and the third... well, it is NASTY.

Not only is it nasty, but it is naturally resistant to (and actually made stronger by) the most gentle anti-fungal medicine.  The second bug meant that the next less toxic medicine could also not be used as they don't interact well at all.  3rd one was out too, as it would not cover all of the bugs.

That left us with Amphotericin B.  A drug so nasty that it has a big, ugly black box warning and has earned the nickname "Amphoterrible".

It is living up to its reputation in Brigid.  Her heart rate is routinely dropping into the 40s, her blood pressure 70s/30s.  Her liver enzymes are rising by the day, it is suppressing her bone marrow and it makes her feel awful.  It was so bad on the first night that the medical team held the second dose so it could be administered during the day with the medical team handy to supervise.  It has necessitated several "middle of the night" ECGs, many calls at 3 am to the docs, and what seems like a global rise in the "oh, crap" factor.

With that said, this awful drug has also led to her first negative blood culture (remember, negative is good).

It also means that we cannot go home.  Not until the end of the course of meds - 6 weeks.  It had been bandied around, but this morning it was made official.  Because they cannot rule out endocarditis (an infection in the interior of the heart) and Brigid cannot be without her central line (pumping the exact stuff that fungus considers quick and easy food into her bloodstream 24 hours a day) she has to be treated with a long course of all the meds she is on - she must be on them for 6 weeks from the day first clean culture was drawn, which means that barring an act of God, Brigid will be inpatient here in London until October 19th.

We can't take her back to Windsor because of the rotation of docs there.  Some of the doctors who cover a weekly rotation are not comfortable with the degree of complexity that Brigid presents.  I respect that - I would rather have a doc say "this child's needs are beyond my scope of practice" than take her on and try to muddle through.  If the doc this week says "sure, send her home" and the next doc says "this child is not adequately supported here and needs to go back to London" it would be exceptionally disruptive for Brigid. At least this way, she can have her new line placed before she comes home (which we would have had to come back for anyhow) and we have a predictable length of stay, we're not just going day to day.

However, essentially maintaining two households for 2 months is going to be difficult.  By the time Brigid finally gets home again, we will have been away for 54 days.

I have been asked by many friends on Facebook if there was anything that they could do.  First and foremost, Brigid LOVES getting mail.  The hospital has a free e-card program - if you would like to, you can follow this link and send her an e-card.  Her room number is B6-118 at Children's - name, of course, is Brigid Kidd.

As well, as much as I hate to say this, maintaining 2 households for 2 months is not cheap.  Paying for Ronald McDonald house, groceries, gas so Daddy can come to visit, incidentals here and there... it all adds up, and quickly.  If you are moved to help out a bit, there is a PayPal donation link on the top right hand side of this page.  Prayers and well wishes are always appreciated, too.  Please keep Dale and Reggie in your thoughts - this is quite possibly harder on them right now than it is on me... I can't imagine being hours away from this all going on.  Life goes on - Reggie started high school,  Dale is busy at work, and here we are - a house divided.

If you would like to contact me personally, you can email me here... If I don't get back to you right away, please be patient.  B has to come first.


rainbowB


05 September 2012

A swift kick square in the "perspective"...

Last update - we had just found out Brigid had a fungus in her bloodstream.  The last time she had a fungal infection (specifically, yeast) we advocated rather vocally to keep her in Windsor, as we felt it was well under control and that her care could be managed close to home.  Fortunately, after a bit of "gentle persuasion", the team agreed, and she stayed at home.

She recovered quickly from that infection - kicked the fever within a day or so of starting on an appropriate antifungal medication, had her line changed, and was home before Christmas.  I guess that was a gentle introduction to the "fun" that is a fungal infection... but the reality is that an infection like this is a beast.

This time, we were approached with the opinion that Brigid would be best cared for in London - and they got no argument from us.  After 48 hours on antifungals, not only were we seeing no improvement, she was deteriorating.  Her blood pressure was uncomfortably low, her temperature, breathing and heart rates uncomfortably high.  So, on Sunday, without a lot of notice but for darn good reason, she was transferred to London and took up residence in the Pediatric Critical Care Unit.

I, on the other hand, took up residence at Ronald McDonald House... thank goodness it exists.

In the big picture, she is improving.  She hasn't had a fever since Monday and graduated out of "The Unit", is receiving 2 fairly strong and targeted antibiotics and a broad spectrum antifungal, and her bloodwork is normalizing.

However, in order for us to get this far, we HAD to try and put our trust in the hands of strangers and believe that they were as interested in this ordeal being gentle on our daughter as we were.  More importantly, we HAD to allow them to remove her lifeline... knowing full well that doing it brought risks of its own.  Her PICC line, the IV line through which she has been receiving her TPN for the last 8 months (the most recent in a LONG series of central venous access devices) was the most likely reason that she was not improving and HAD to come out.  Not only did it have to come out, but to reduce the risk of her becoming reinfected, she had to remain without ANY sort of central line until there was at least one negative blood culture.

Even more tricky - something we just learned today - was that she was not fighting just one yeast strain in her blood, but two.  One is C. parapsilosis, most commonly seen in patients on TPN or those with compromised immune systems, and the second... well, they don't know what it is.  We are still waiting for an ID.

So... we allowed the line to be removed.  In order to try and keep her blood sugar high enough to keep her safe, she requires 2 peripheral IVs with dextrose solution running though them... and keeping them intact has proven to be our biggest challenge.  On Sunday, under sedation, it took multiple attempts to get those 2 lines in.  She ended up with one in her foot and the second in her hand.  Once they were in and running, the next step was to pull the PICC line.  Her fever was reduced within 2 hours and was gone entirely a little more than 12 hours later... clearly, trusting the docs, while exceedingly difficult, was the right thing to do.

HOWEVER... those IVs, critical as they are, are NOT behaving.  Brigid has exceptionally fragile veins, and for as long as we have had to subject her to IVs, this has been a problem.  Since Sunday (3 days, if you are counting), Brigid has endured 33 IV placement attempts, resulting in 7 IVs that were actually usable and 26 blown sites.  The first line she lost was Monday afternoon in her right hand.  Within minutes of losing it, her blood sugar was in the "moderately hypoglycemic" zone and dropping (with one IV still running).  The one that replaced it blew within 2 hours and was replaced after a few tries.  Next round of excitement had her lose BOTH IVs.

Now, imagine this.

Brigid has the spirit of a warrior, and the fight to match. She has been known to require 4 adults to hold her down when she has decided that the procedure in question was not something she wanted to cooperate with. I held her as the venous access nurse, then a NICU nurse turned doc, then 2 nurses from the PCCU and so on tried and tried to get an IV into this little girl. I heard her pleading for "no more slivers" become more and more slurred.  I felt her weaken as her blood sugar dropped and her fight slipped away.  I watched as attempt after attempt ended in looks of frustration and despair on the faces of the professionals working on our precious princess.  I saw her eyes roll back in her head as she gave up.

For over an hour they worked, and finally, after what seemed more like a year than an hour, they had 2 IVs in again.

For over an hour, for the first time in almost 5 years, Brigid had no IV access.  The IVs that I have cursed time and time again - those which I secretly wished would disappear were gone.  But not how I wanted them to.

And I got a swift kick square in the "perspective".

Do I dislike that Brigid needs IV access?  More than there are stars in the sky.  Do I yearn for the normal life that Brigid might have had?  Of course.  Will I ever wish it away again?  Not as long as I draw breath.

They say "be careful what you wish for".  This has been a very graphic lesson indeed.

The plan from here forward is not linear.  First, and foremost, we need to pray for a continued clean culture (clean at 24 hours, so far).  We need to hope that the Interventional Radiology does not need to bump Brigid's scheduled PICC placement tomorrow at 2.  Brigid needs to be seen by cardiology and ophthalmology to determine the spread of the fungus throughout her system, since it has a nasty habit of setting up shop elsewhere and causing havoc.  We need to determine what the other bug is, how to treat it, and what to do to reduce the chance of this happening again.  We need to get her back to Windsor, continue treatment, and return to London in a month for the placement of a more permanent tunneled central line.

That just about covers the physical recovery from this experience... the emotional is going to take a whole lot longer...