Tuesday, October 16, 2012

I am a special needs mom

I am a special needs mom. A mom who knows about:

Watching the weather closer than most weathermen and then trying to make the decision of whether or not it is safe to keep your child home when the weather turns nasty because you live on an island and the closest hospital is over an hour away by ferry. If it's running.

Having your child be on that ferry, in the middle of the bay, and stop breathing because she is having seizure after seizure after seizure.

Racing up to the local medical center only to leave by ambulance and be taken to the airport and flown off the island because your child is too sick to wait for the ferry.

Alarms screaming in the dead of night to wake you from a not so sound sleep because let's face it, there hasn't been a good night's sleep in so long you don't even remember what it feels like to wake up really rested.

Immediately having your heart racing as you check the video monitor to look at your child. The alarm continues to blare as you try to see, from your bed, is it just that there isn't a good connection because she is wiggling, or is she not breathing well? Is she having a seizure?

Dragging yourself out of bed for the third or fourth time and standing beside your child as they look at you with eyes begging to "help" them yet they can't tell you what's wrong. Their breathing is jagged and their motions are jerky but try as hard as you can, you just can't figure out the problem. Stroking them and telling them you love them with tears in your eyes because you feel so helpless and a parent's number one job is to help their child.

Some days not being able to shower because you don't dare to leave her alone long enough to have one.

Not being able to go out of the house whenever you want or need to because you can't manage you child on your own because they have gotten too big and oh, yeah, your back is in constant pain.

Fighting for all the things the law says your child is entitled to but the people in power don't want to give her because it costs money. From schools to insurance companies to the State you live; all fighting you because of a dollar.

Having to explain every detail of your life to a stranger on the phone to justify why your child deserves to continue to receive certain benefits. Like home health care. Or a wheelchair.

Changing diapers on a little girl who isn't so little anymore. Who will soon be going through puberty and all that that entails.

Always having to be sure you never run out of life saving medications. And oh my God, there are so, so many medications to keep track of.

Mixing up those meds three times a day.

Carrying a "jump bag" everywhere you go that is filled with emergency meds and oxygen and actually being more concerned about that at any given time then where your pocketbook might be.

Thinking you're going to an appointment only to end up in an ER and then more often than not, end up admitted for at least a few days into the hospital.

Being able to work the hospital monitors that your child is hooked up to so you don't have to call for the nurse, again, to do it for you when the alarms sound.

Speaking with primary care doctors so often that they give you their pager and home phone numbers to keep "just in case" something should come up and they're not on call.

Having to pick out wheelchairs, lifts, tub chairs, and handicapped vans.

The "friends" you see the most often are your child's nurses, therapists and special ed teachers.

Becoming close enough with the people at the companies who provide all their equipment and feeding needs to joke and laugh with them on the phone and just chat for fifteen minutes or so to "catch up".

Trying to juggle the needs of your other kids with that if your special needs one. Always knowing you could be doing better at it.

Leaving your child in Special Care without you (but with someone they are close to so they won't feel alone) because another one of your kids has a big part in the school play and if you miss it, that's it. You won't get to see it again.

Worrying about the very real possibility that you could miss seeing your daughter's graduation from high school because your special needs child might get sick/have a seizure/be too loud to stay in the auditorium or any one of a hundred little reasons that could come up.

Having a nurse come into your home one day because your child has finally gotten "sick enough" that even the State realized that a normal parent cannot be expected to do this alone and then coming to think of that nurse as a family member. A sister. A fellow soldier in the fight to keep your child alive. A security blanket. A life line. Someone who makes it possible for you to not only stay for your daughter's high school graduation and not miss a minute of it but actually be able to relax and enjoy it.

And above all, the constant fear of, is this it? Is this the time the seizure/infection/disease wins and you will lose her for good. And then the realization that all of the above amounts to diddly squat when you think of what it means if you never have to do any of it again.

So, yes, I am a special needs mom. And grateful to be one.

Friday, October 5, 2012

The sniff test

About two weeks ago the hubby was giving Tessie a bath when I noticed that the little piece of gauze that we put around her Gtube button looked, well, gross. Now I know you're probably thinking that something that goes around a Gtube button and into a stoma in the belly would probably look gross normally, but you would be wrong. As a general rule of thumb, those little gauze pieces come off just as white as they went on with maybe a formula dribble on them if anything.

I was looking at blood. And something a tad greenish. Um, yeah....

I immediately thought, "Oh, no...it's an infection in her Gtube site", which can be very yucky if left untreated and make my little Toodle Bug quite the sick girl. She has had only one Gtube infection in nearly five years and that was almost right after the surgery to put it in so really, we had done an awesome job of keeping the site infection free and, all of her doctors, from Rockland to Boston would always comment on how great her stoma looked, making me beam with maternal pride and just a bit of smugness that I was so adept at Gtube maintenance.

It's the little things, people. Don't judge me.

Alas, it seemed as though my perfect record was over. But how to know for sure? I mean, the evidence thus far was purely circumstantial. A piece of gauze with just a little bit of dried blood on it and something with a greenish hue. Pretty convincing stuff but still it left room for doubt.

When it comes to Tessie, I do not leave room for doubt whenever possible.

So I did something that in hindsight, I can see, might seem a bit beyond the pale. Might disgust some. Might even make the more sensitive types (Hello Charlie) want to vomit.

I sniffed it.

Oh yeah. I grabbed that nasty, bloody gauze, lifted it to my nose and inhaled.

Behind me I was hearing, "Oh my God! That is frickin' disgusting! OH MY GOD!" *insert fake puking sounds here*  from the hubby.

When my vision cleared and I could think past the overwhelming, putrid stench emanating from that little piece of material, I marched right up to him and lifting that gauze like a woman on a mission said, "SMELL IT!"

Now many people won't admit this but the reality is, when you find a smell as heinous as the one I held in  my hands, your natural, almost primal, response is to want to share it. It's almost like you need someone else to validate how unbelievably gross it is. In a weird way, there is a certain thrill to bringing the putrid object to another person and watching as they back away in horror while shaking their heads and shrieking, "Get that thing the hell away from me!"   This was just like that but with vile, infected, bodily fluids.

I know.  Disgusting. But you need to understand how very, very nasty the situation was while at the same time the extreme pleasure I took in absolutely freaking Charlie out by taunting him with it. "SMELL IT, SMELL IT!"

Like I said, it's the little things.

At any rate, I deduced that her Gtube was most definitely infected and was not at all sure how to handle it on a Sunday night. So I slapped some triple antibiotic ointment on it, a fresh piece of gauze (the better to taunt you with, my dear) and called Sheila.

She agreed with my diagnosis based on my sniff test and suggested I get The Toots an appointment with her pediatrician when the office opened in the morning. So of course, by the next morning Tess was good and sick, Fever of 102 which I believe was from the infection but she had also come down with a bad respiratory virus so really, it could have just been a combination of everything.

I got Tessie to the mainland and when asked by her doc why did I think her Gtube was infected, I'll confess, I was quite hesitant to tell him what had actually transpired to lead me to that conclusion.

After a minute or so of babbling some nonsense about bloody gauze strips I just stopped, looked him dead in the eye and said, "I'm really embarrassed to tell you this because I'm sure you'll be as grossed out as Charlie was but the reason I know it is infected is because I smelled the gauze and then her stoma and only something that is infected can smell like that."

He never even batted an eye as he replied, "Well, how else would you be able to tell?"

Reason number one million and one why I love Tessie's pediatrician.