You had what? I've never heard of that....

Usually the "I've never heard of it" phrase comes in conjunction with Lauren's Noonan Syndrome. This time it was for my bout with Toxic Shock Syndrome.

"What? What is that?"

Most women who've read a tampon box have probably read the warning about Toxic Shock. I don't use them so have only heard in passing. Turns out Toxic Shock Syndrome can happen - though rarely - as a reaction to toxins produced by StrepA bacteria. It's not pretty.

After weeks of sick kids and sick hubby it was finally time for sick Mama. Yep. I actually had to go to bed. Every mom out there is sucking in that gasp! of  horror. It must have been bad. No Mama ever has time to actually be sick!

It started Saturday, well, honestly, Friday, with just a feeling of blegh. I went to bed Saturday afternoon and after sweats alternating with chills, by Monday morning had a crazy rash that looked like I'd been sun bathing nude for 6 hours. It didn't itch, just was very sunburnish red. By Tuesday morning it was clear I needed to see someone. Rather than try to get in to see our doctor, off to the ER we go.

There were a lot of amazing moments that God steered us through that day and those that followed - there were people who could come look after Lauren and someone to meet Roman's bus. There was only one person ahead of me in the ER and they had a bed to put me in right away. The doctor on call was a staff favourite. The nurse assigned to me was compassionate and an expert at IVs and so on.

Upon admitting to the ER I gave enough blood to save a small nation but it would be at least an hour before any results came back. Dr. K (the nurses favourite) knowing there was an infection and mentioning Toxic Shock, had me started on broad spectrum antibiotics by IV right away.

From there a bed came available in the Critical Care Unit (aka ICU) in a room all to myself. Because the source of the infection creating the toxins was unknown, I was on "contact" protocol. Everyone had to wear gowns and gloves whenever they came in to treat me. This, despite how it sounds, is a good thing! It meant the entire time I was in hospital I had a room to myself - not always something easy to come by - and each time, that room was at the end of the unit, away from all the ruckus and activity. Each nurse I had was amazing. The nurse assigned to me for the first night broke the rules and gave a fevered patient a nice heated blanket when I couldn't get warm. She also found me a tooth brush and tooth paste. She was my hero of the day. The nurse the next night found a fan to help cool the room and make me more comfortable. She also made a jug of punch - cranberry juice, orange juice, ginger ale and the jug packed full of ice - out of her own stash, just because she knew I would like it. And I did. She was my hero for that day.

The whole time I'm being pumped full of antibiotics - two different kinds - and more fluids than a camel can carry.

By day 3 they were ready to move me out of CCU into the "step down" unit. They still hadn't found the cause of the infection and triggering toxins but given hubby's diagnosis of strep throat, they were going with StrepA as the cause. The bacteria was in our household and it was the only logical source. The antibiotics, IV fluids and contact protocols carried on to the Step-down unit and I still "enjoyed" a room of my own. It was 5 days before they lifted the contact protocols and hubby and I decided it was okay for the kids to come see me.

I knew one day Lauren would have a night without me. This was NOT the way I had envisioned it and certainly not for 5.. then 6 nights.

In the end I was very lucky. While my blood pressure had dropped while I was sick at home, my oxygen levels had remained high and circulation had continued to my vital organs. Things went swiftly at the hospital and my body responded well to the antibiotics.

Nearly a week later on Monday I came home and have had a week of help from Oma to get over the next hump. I still often feel like I've been run over by a truck and I definitely need to crawl into bed for a nap a couple times a day but today, a second week after it all started, I drove Lauren to the Little Gym and survived to tell about it.

The entire month of November has gone. Gone. Starting with sick kids through two weeks of me being completely out of commission, it's hard to believe there is now only one month til Christmas.

And I will savour it.

Finally! A doctor I really like!

Today we met a doctor I can relate to, trust and actually like. Seems a bit dramatic but we've met a lot of doctors and the quality isn't always up there.

We arrived on time and there was only one other family waiting. Right away I'm feeling pretty good about this. Within a few minutes we were escorted to our exam room. Not the prettiest room we've seen but certainly not the worst. We settle in and end up waiting only 10 minutes or so - not even long enough to get the stash of Hot Wheels out of my purse. Impressive.

In walks a doctor who is personable and talks to Lauren as if she's 3 1/2. Not like a baby, not like a teenager who would understand everything but warm, gentle, straight forward. For once we didn't have to go through Lauren's entire history AND he'd thoroughly read the entire report from the sleep clinic. AND, not only did he know what it all meant, he also knew about Noonan Syndrome and what that all meant.

I can still hear the angel chorus.

Also, he some how seemed to know every question I was going to ask and answered it before I needed to voice anything.  Contented sigh.

So here's how it went. Dr. K checked Lauren's ears (one is filled with fluid. No surprise there since everyone here is sick but me.) and her throat. Next he went to find the tiny scope to put up her nose. "The one we use with preemies" he stated. Nice. Recognition that my daughter is small, that her nose is tiny and that the whole ordeal for her is going to be less than stellar. Lauren agrees to be brave and, while she was howly - and who wouldn't be with something stuck up their nose - she stayed really still.

The results: her tonsils, on a scale from 1 - 4 are about 2. Her adenoids are 70% which I think is how much of the airway they take up.

Dr. K clarified that while the sizes aren't huge and aren't small, what works for each child is different. Given the results of the sleep study and combined with the hypotonia inherent to Noonan Syndrome, they are, in his words, "too big for her".

[ On a side note, he clarified for me that Lauren's obstructive episodes during sleep all occurred during REM sleep. Not as bad as it could be but not ideal as REM is the restorative sleep she needs to make it through each day. He also noted from the study results that Lauren has a lot of sleep disturbances throughout her whole night, averaging 10 per hour, which may be more obstructive episodes that simple didn't register that way. Did I mention that I really like this guy? ]

We have three options. We can jump right in and have the offending organs removed, we can wait a while and expect to have the removed when she's older or, we can do nothing at all.

Here's how it breaks down.

Having surgery is standard in this circumstance. It would be at Mac and the doctor we met today would do the surgery. It takes about 30 minutes but has a tough recovery lasting 2 to 3 weeks and Lauren would likely lose up to 10% of her body mass in that time. "Normal" children go home surgery day. Children with syndromes of any kind are kept at least one night. We could expect that she'd be in for 2 or 3 days, possibly up to 5 or 6 and primarily for pain management. "It really hurts"  Finally. A doctor that actually admits that kids hurt, that it's not just life as usual right after.

Waiting to have the surgery is the next option. We'll face the decision again and again until "later" is reached. If we wait til she's older than 7, the potential for bleeding complications increases - for all kids and for no known reason. The risk to her heart gradually increases over that time and, if we decide to start growth hormone therapy, her adenoids and tonsils will likely get bigger and she'll really need them out. The healing process for kids between 3 and 7 seems to be the quickest but waiting means she's more likely to comprehend why it's necessary.

Not doing anything at all is, technically, an option. It means her apnea will continue. It means the apnea will put further strain on her already compromised heart. It means we may not be eligible for growth hormone therapy. It means she'll be at a disadvantage from sleep deprivation* and all that goes with it. The ultimate worst case scenario would be heart failure from the added stress of trying to pump enough oxygenated blood.

I asked Dr. K, "If she was your daughter, what would you do?" which he took a moment to ponder. He didn't launch into a quick patronizing "Of course I'd do it" but rather a considered (or practised?) "Well. I'd probably do the surgery. Because her sleep is so disturbed and we don't know if it's because of apnea or not, and she needs her sleep, I'd do it."

So essentially, her adenoids and tonsils need to come out so we can determine whether they're the cause of her obstructive apnea. They're not ever going to shrink on their own. In order to solve the sleep issues, we need to tackle each thing in sequence. Given Lauren's best quickest recovery period is in the next year or two, deliberately waiting isn't in her best interest.

Thankfully, some waiting is required as it will be 6 - 12 months before her date would be set (perhaps because it's elective) giving us plenty of time to change our minds.

 If I look at it analytically, it's just like the decision we made about fixing her ptosis last year (funny... the clothes she's wearing in that entry she wore yesterday including the now very grungy crocs..) We elected to correct her droopy eye lid so it wouldn't be a hindrance to her when she's older. This new decision has a lot more medical weight behind it but ultimately is about investing in her future.

I signed the paperwork today.

PS: Alice, if you're reading this, tell my mom I'll tell them all about it on Sunday. ; )

* Sleep deprivation will either show itself as extreme and on-going fatigue or, in many cases, the opposite as learning disorders, hyperactivity and ADHD type behaviour.

Off to the ENT

After having post-poned our appointment once already, today I'm hauling Lauren off to Mac complete with slimy nose. Getting the appointment involved a lot of phone calls and hunting down of reports but finally we're in.

This one is in response to the sleep study results and I'm not willing to wait any longer to find out if she's going to need surgery.

Roman meanwhile, is still feeling miserable. This morning he woke again with a sore ear and continues to have impaired hearing from fluid build up. It's officially been weeks. We saw the pediatrician last week who basically dismissed us. Guess it's the typical kid cold going around and we'll simply  have to live through it.

The funniest thing at that pediatrician appointment? When the office administrator asked for the health card and, without thinking, I gave her Lauren's. I took both cards out of my wallet, checked the names carefully and handed Lauren's over.

Since I can't remember the last time I used Roman's card, I guess I shouldn't really be surprised...

Hallowe'en(ish) Moments

Hallowe'en could come and go without fanfare and I'd be just fine with it. There's nothing like driving all over the county to find a pumpkin the day before Hallowe'en with two kids repeatedly whining "where are we going to get a pumpkin? Are we still getting a pumpkin? Where are the pumpkins?"

Lauren sorting seeds from goo so we could roast them.

But as they both wanted to carve a pumpkin (thank you so much Dinosaur Train) we did the deed. The "both" wanting to lasted until Roman saw how gooey the insides are. In that instant it became a "Lauren and Papa" project. Roman drew a design for the face on paper so his participation wasn't completely supervisory in nature.

Roman's school class was also having a party. Rather than send processed snacks, we made mini cupcakes complete with M&M spiders. 

Icing spiders complete with thread to hang from

As we know very few people that live within a 5 mile radius, we arranged for Roman to go trick-or-treating with a neighbourhood family instead. The youngest member of that family is the same age as Roman, they were in the same kindergarten class and all four siblings kids love to have Roman around.

When I dropped him off, I felt bad - what kind of mother am I that I send my kid out with someone else for his first trick-or-treating night? But when he came home (very late) completely glowing, I knew it had been the right decision. He wouldn't have had nearly as much fun T-or-T'ing with just me.

Meow!!

At one point in the evening, in the truck, when it was well past Roman's bedtime, Roman declared in a very matter of fact voice, "My eyes want to close but I'm not going to let them." That sounds like my kid.

With ears and tails... and a candy bucket that was way too small...

The parents also said that when people gave him treats he would tell them about "my sister" and how she can't have fructose. Most people were confused by this (and rightly so. Who, other than us, has heard of or cares about fructose??) but I appreciated how he was looking out for her even though she was home in bed.

This attention to detail about his sister continued after school on Tuesday when he sorted his treats. They went into two bowls - Things Lauren Can Have and Things Lauren Can't Have. And she isn't even required to ask his permission to have anything from the Can Have bowl so long as Mama says it's okay.

How sweet is that?

For the record, Lauren also enjoyed Hallowe'en. For her it started last Tuesday when I finished making her tail and continued through this week. Tail and ears made an appearance at least once a day for the whole week including the full ensemble to school again on Tuesday.

Oh... and those bowls of treats? Barely touched. Maybe I'll hide it all away so Santa can use it as stocking filler...