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Life in the NOT so fast lane

A number of circumstances have kept me away from writing.  Such is the life of a family with a medically fragile teen.  While Sophie is doing great overall, there are always things that need to get done that a “regular” 19 year old would be able to take care of themselves.  Ok, maybe I’m delusional with some of it, but basic things like keeping her hydrated, changing out her various DVDs, moving her from x to y, and yes changing her pants, her clothes, her position I would think could be done independently for most teens.  In an already busy day I’ve doctors to follow up with, medications to give, hydration to monitor, emptying those boxes, ordering more supplies, coordinating nursing if we have any at all, checking with tutors, going to therapy, constant body-checks to look for injury.  Always on “high alert” for anything unusual.  By this time in your kid’s life you are probably worrying about if they get home ok, have they got a job, or are doing well in college, or if you even have enough money to cover that college, and hoping they are making the right choices in life, in friends, in boyfriends…

One of the most frustrating things I live with is the constant waiting.  Waiting on lab results, waiting on phone calls back from doctors, nurses, specialists, insurance people, school administrators, coordinating therapies, more lab results, more consults, more doctors.red clock

I am an admitted “control freak” which frankly has kept my kid alive for coming up on 20 years now.

Recently I was told to take a break, let the nurses/staff take care of Sophie while she is in the hospital getting teeth removed.  Yes, that’s what I said, getting teeth removed.  You see, it’s NEVER simple.  One issue leads to another. Here’s an example of what life is like with this crazy teen.  It’s Fall here. Back in January she’d had a dental appointment and it was determined that she needed teeth capped, teeth removed, teeth cleaned and x-rays done. Ironically, you could yank her teeth out without anything, since she doesn’t feel pain. But this all needs to be done under anesthesia, in the hospital. Say the word, “hospital” in our house, and you start a long list of questions:

When? How are we going to coordinate this while taking care of her brother’s needs, the pet’s needs, the husband’s needs..oh and my own needs. That’s the questions that most everyone would have to ask.  Now we get to the tougher questions, the ones that are unique to kids like mine: is it flu season? Can we wait till flu season is over? How “healthy” is Sophie right now? Can her body handle being in the hospital with all its other germs? Will she need to stay overnight (with her sleep disorder this is a huge undertaking.) Will she need blood products since her platelets are so low? Does she need clearance from her regular doc, her GI doc, her orthopedic doc (scoliosis can mean issues for breathing while under anesthesia), her neurologist (she is treated for seizures)?  Did I forget anyone?   “Clearance” can mean yet another appointment, which means another wait to get in, get checked, get approval letters.  If we are lucky it means a phone call and a letter faxed.

And the days go by.  Can we wait? What kind of impact is this on Sophie’s body? What are the consequences for waiting? Can it be done at the local hospital, or do we need to go the bigger city hospital and do the dentist and oral surgeon have rights at those hospitals?

Now comes the “comfort” questions: can we be with her until she is put under? As soon as she is out? (She needs monitoring/comforting while going under/while awakening or injuries can occur, placing her and us in the hospital for a longer stay.) She is NEVER left alone without someone who knows her intimately, knows her needs and how she communicates.  A non-verbal (she uses a talker to communicate) teen who doesn’t feel pain, doesn’t understand the damage she could do to herself or others with autistic-like behaviors- it just isn’t safe for anyone.  Can she stay in her chair until the last possible moment, as she hates lying down unless she is asleep or sedated? Releasing my “control” over her central line means others touching the line which could equate to a line infection, which means blood infection and high powered drugs and a possible hospital stay.

Thinking this could be accomplished at the local, smaller hospital, it was set up for after flu season, in May.  Platelets given to bring hers up to curtail bleeding issues.  Off she goes.  Three hours later she’s been cleaned, x-rayed, and capped.  Uh Oh, the platelets didn’t come up high enough for the oral surgeon to be comfortable with the removals.  Too many more hours needed to get additional platelets up and into her, so mission aborted.  Crap.  Here we go again.
Sophie getting platelets Oct 2013
Hematology consulted, appointment, new protocol, new oral surgeon, new plans now at the big city hospital.    This takes 4 months to accomplish.  Convince the local hospital to give her platelets per the protocol of the hematologist. rash from platelets Oct 2013 Sophie, true to form has a reaction, not bad enough to stop us going, but gets my Momma Bear juices flowing- what next?! Get to the big city hospital at the crack of dawn (actually before), and teeth extracted along with a bone marrow aspiration to look into this whole platelet thing.  Not without a little drama- her platelets once again do not come up.  The oral surgeon nervously removes the teeth.  Steps are taken to prevent her from bleeding out.  She’s a champ, seems fine by the middle of the afternoon so we can beat rush hour.  Drive home and as we pull into the driveway I look back at her and she looks like Countess Dracula.  Perfect, it’s October.  More phone calls, more waiting, deciding if we turn around and head to the ER.  Thankfully it subsides, she bleeds for 4 days though.

Two to three days to rebalance her fluids and get her GI tract to start to work well so she can take the NutriiVeda (a functional food protein powder) that has helped her to be healthier so we can even contemplate the next procedure, the next issue that arises, the next thing.  And there will be a next thing, that is the rollercoaster we ride.  She’s not acting normal for herself, we check her line for infection and check for a urinary tract infection.  Cleared on the line, but the urine is positive.  Round of meds given, we are back on track.  For now.  And we take a much needed break from the craziness.

We are still waiting on results of the bone marrow study and it’s November.  Almost 20 years later and she is still the mystery child.photo (51)

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