November 09, 2014

Here We Go

While the rest of Virginia is donning their cozy sweaters, relishing in every colored leaf and crisp breeze of fall and the invigorating feeling that it brings, I am wearing only my machine washables, with my blood pressure rising, right eye starting to twitch and dark sleep circles starting to cast their first tint under my eyes.

Fall should be wonderful.  Fall in Virginia is the closest thing to Heaven.  The hope of Fall is what got us through the icky sticky humidity filled days of July and August here.  Fall is why we live in Virginia.

I used to feel that way.

Fall is now an entirely different season.

It is the season that I begin by taking a deep breath and pushing up my sleeves, and saying, "Here we go!"

It is the season that marks the commencement of this. . .


Vomiting, fevers, worry, extra doctor visits, more insurance work, and hospitalizations - both extended stay and ER visits.  It is the season that will make me sustain days and weeks on end of no more than 3 hours of collective sleep per night and no rest to be found in the daylight hours either.

I am not just talking about your every day flu, strep and hacking cough.  Typical child illnesses are a walk in the park now.  I am speaking of the illnesses that come to a medically fragile child - which take on a whole different life of their own and are not for the faint of heart.

While most people are sipping cider and jumping in piles of leaves, I am making sure we have a bottle of hand-sanitizer in every convenient location, and hunkering down knowing that the storm clouds are brewing.

Unfortunately, the first clouds of "the season" have began to appear in the form of vomiting and fevers - those illnesses require me to be by Bridger's side nearly 24/7.  He doesn't have the instinct to turn his head when he vomits, therefore aspirating it, which leads to pneumonia, which leads to hospitalization.  If he vomits up his seizure medication, he will also not keep the seizures at bay, which will lead to more seizures, which leads to hospitalization.  If he cannot keep Motrin down, he will not be able to control his fever, which will cause more seizures, which will lead to hospitalization.  If he has a hospitalization, it is guaranteed that he will contract a secondary illness, which will lead to further hospitalizations. You catch the trend?  I need to keep him medicated, pumping fluids down his g-tube by 10-20ml at a time in 15-30 minute intervals throughout the day and night.  I *sleep* {not really} with one eye open and ears peeled listening for the sound of retching and run to his aid.  

#1 tip to survive frequent vomiting: Towels are disposable, as can be clothing at times.  That Olaf hat he insisted on wearing as he was sick, laying in my bed surrounded by {disposable} towels and vomit bowl -- well, that was going to be trash too if it had taken a vomit hit.  Glad it didn't come to that.

You want to know the deep, dark secret of this special life? If I happen to fall asleep in the wee hours of the morning and then wake up in the morning and don't hear sounds coming from his room -- I have a sickening pit in my stomach.  Do you know that I am scared every single morning when I have to walk into his room when he hasn't made a sound first?  I am scared at what I will find.  Once you have walked in the room of your child and found them gray, covered in vomit and non-responsive, it is a vision that will never leave your mind and forever leave you nervously ready to encounter that scene again.  Those mornings, I have to take a deep breath and slowly exhale before I go in. Other mornings, I just can't bring myself to face that fear and I send Alan in to check on him first.

That is not a great feeling to wake up to every morning all winter long.

After Bridger's recent week of vomiting and fevers came an exciting few days last week of seizures . . . which also comes with vomiting and fevers. . . and lots of screaming.  Some seizures come with undesirable behaviors for many days prior, and seizures also have a variety of postictal side effects.  For him, they include severe grumpiness (manifest in inconsolable screaming), fevers, vomiting, and, in this case, lots of pain as this seizure caused Bridger's teeth and mouth muscles to make utter ground beef of the interior of his mouth and tongue.  Subsequently, he refused to take anything by mouth for a week and we began the cycle of hydration/daily meds/Motrin/nausea meds/repeat throughout the day and night until until you finally get that precious smile from him that shows you have both weathered the storm.

Nurse Ty stays dutifully by his side
So, if you see me walking around a little dazed and rubbing my temples as you skip through your errands with the bounce of Fall to your step, know that we are experiencing two very different seasons.  Mine is still a beautiful season, however, because I am busy caring for my fragile Little Oak.