Tuesday, August 11, 2015

It's the P word.

My Mom asked to take Rylan last Sunday.

Sure I thought we don't have nursing this week so why not?

Sunday Morning we woke up and Rylan was coughing quite a bit,  of course I was a little alarmed.  But when we checked his stats he was sitting normal.

"Should we cancel to be sure?" I asked Steven concerned.

"Nah, look at him, he will be fine" Steven responds.

Ugh.  ok.  

We drop him off at My Mom's and everyone is telling me to basically chill the fuck out.  "He is FINE".    So I went and enjoyed a Sunday with Steven.  

We picked Rylan up later and he was asleep.  Still sounded bad, but was sleeping comfortably.  This eased my mind a little bit.

We came home did the last of his treatments and feeds then went to bed.

The next morning I wake up to take him to school, but he still sounds bad and his breathing was off....so I grab the pulse ox and check him.  93....94.......93....92.....91.....93.   nope.  

But because I have a tendency to overreact (I know shocker), I woke Steven up to get his opinion.  "Nope, lets keep him home and hit him up with treatments" he says,   Getting the second opinion I knew that he was officially working his immune system as suggested.

So I let everyone at the school know, and we planned every 4 hours vest and albuterol.  So I got him dressed and started his treatment.  As soon as we finished treatment one he sounded nasty. So a good suction we got up what needed to come up.   3 hours later he sounded like shit again,  So I force him to cough, and this becomes are ongoing theme for the day.

He was laughing and happy, so I am thinking...he is good! Maybe its a little cold.   Around 2 he decides to throw the BIGGEST fit...complete with thrashing and an extra dash of screaming.   HE continued this until 6.

I gave him tylenol. put on his favorite show.....I did EVERYTHING I could think of to get him to calm. NOTHING worked.  So when 6 came I set him up for treatment and poured a nice little cocktail and popped a couple Ibuprofen,  When treatment and feed were done it was like a switch flipped, he stopped. Like nothing ever happened.  Just as I was on the phone venting my frustrations to my Mom as I was on the phone with her Steven calls. YES I will cry to EVERYONE.

Come bed time we get our routine done, do one last section and he was sleeping in bed comfortably.  Steven got home and did a treatment and suction so I could sleep.  Big perk of him working a night shift.

I wake up to the sound of the suction machine and do my automatic 3rd degree to Steven.
"did you do a treatment?"
"did you get a good suction?"
"Where were his stats?"
"Did you check his butt?"

He answers and I am guessing I rolled right over and went back to sleep, because next thing I know I was waking up to a blood curling scream.

I jumped out of bed, I am thinking did he get stung by a scorpion? spider?  Did he get an arm or leg caught somewhere???  I run in to him screaming, sweating, and sounding like ass.  I check him numbers....Still good. What the fuck?

With him screaming in agony (no joke) I seriously considered taking him to the ER.  But he eventually calmed down and I went to lay down for 30 more mins.  

But then my brain was going...Rylan is crackly sounding......What did that mean???   He has been healthy so long I forgot!  Shit.....cracking....cracking.......ugh my brain did not want to work.  So I went to google.  There is was crackling = the dreaded P word. "Pneumonia".  Fuckballs.

SO when Steven got up I let him know what was up and we both agreed.  It was time to see the doctor.

I call at 8, and they can get him in at 845.  We live 40 mins away,,,,,,shit. So I hang up ad Steven and I hurry to get him loaded and on the road.

It of course was raining....and that slowed traffic down a lot. We drove a good 10 miles under the speed limit all the way into town then my car yells about low tire pressure, good timing car thanks.  That is when I realized we were not going to make it on time because of  all of this I called them back and they were super nice enough to still take us when we got there.

We sneak in through the back door, with his lungs already in limbo we got the green light to skip the waiting room.

Dr. J comes in and checks him out and confirms its Pneumonia mostly in the right lung all the way down..   So we discuss the plan of care to hopefully stay out of the hospital.  I asked if he thought maybe it was the weather and change in routine.  He says no, 100% sure he got it at school. Ok then. When I ask what can we do at the school to help prevent.....he responds Washing hands.

So we leave with the plan of Treatments every 3 hours with Albuterol throughout the night with antibiotic. We are gonna attack it before it gets out of hand.   Steven and I also bought a hand washing sign he will wear on his wheelchair, Hopefully it will help cut the risk a little,

But all in all its been a good healthy stretch....but like most good things it had to come to an end.

All I am wishing is to please let this work.  Especially with him going under in 2 weeks. Plus I really hate seeing him sick!

Monday, August 3, 2015

5th Grade

The alarm goes off at 4am.


I drag my ass out of bed and hop in the shower.

The house is completely silent.

I get in the shower, get dressed and get coffee going and Lucy fed.

I gave myself enough time to be able to enjoy my coffee before Rylan needs to get up.  When my bedroom door opens.  Steven grunts goes outside to have a smoke, then crawls back into bed as I sit and enjoy my coffee.

All I can think is "great the sheets are gonna smell like cigarettes."

About 530ish I start with Rylan.   The boy did not wanna wake up.

This worked in my favor as he barely fought me as I was getting him in the shower.   After the shower he tried to fight.....but was not awake enough to accomplish his goal.

Thankfully I got all his supplies and his backpack put together the night before, because by the time we were done with his bath and treatments....we had about 15 mins to do his feed.

I still needed to put his AFOs on and get him in his chair. ugh!

I finish his feed and successfully get everything ready to go . Since Steven went back to bed I opted to turn Rylan's talker on when we were outside.

Once in the van we were off......the speed limit down here in 30 mph.  So I needed to plan for that.....I also know how the cops down here work. It is the first day of school.....they will be EVERYWHERE.

Once we get to school I was elated that the ONE handicap spot was open. So I quickly grab it and realize we have a few mins. I then notice the news parked a few spots down.  Nice.

Once I see Ms. Sherry,  I go to get him unloaded.  When his Aide "Ms. Nancy", walks up behind us and offers to help.  Well we had to wait for the Mom who parked next to me to get her littlest crotch-fruit into a stroller.  Because she moved so slow blocking my door Ms. Nancy had to run and check in.

So I grab everything and roll him toward the school, carrying, my purse in one hand pushing his wheelchair, while holding a pack of diapers and a gallon jug of water under the other.   We roll up and stand where everyone else is, When Ms. Nancy runs up to let us in and get us out of the heat for Rylan's sake.

Good Job Nancy.....your earning my trust.

We roll to the P.I. (Project Inspire) room where we wait.  We see a few of the other project inspire kids, while I go over everything with Sherry and Nancy.

One kid came in with dirty clothes.   I am sorry but really?  You couldn't let the girl be clean??? Some parents really irk me.

I hang around till the bell rings and watch Rylan roll into class, with all the germ monsters waiting for him to go by, waiting to spread their nastiness to my son. I quickly brush off my thought, then I take care of the last few registration issues, before heading home. Nervous.....but surprisingly calm.

I get home and Steven and I use the time to clean house.   We got it done in record time!  No Rylan meant No stopping....I can tell you I feel SOOOOOO much better and can relax easier in a clean house,

But then we had no idea what to do....Rylan IS what I do.

I ended up playing Piano, while Steven went to go fly one of his Hobby planes, then we played battlefield.....but still we were bored.

I decided to try and finish my book.  then before I know it it was time to leave to go pick up Rylan.

the P.I. kiddos need to be picked up before anyone else, SO I got there in plenty of time before the line started.

I get to the office and ask if I needed to sign in because I needed to pick up my son, but talk to Sherry first.

"What's your sons name?" the office lady asks.

"Rylan McD-----" I respond.

She picks up the phone and calls Sherry

"Hey Sherry Daniel's Mom is in the offi...."

"His name is Rylan" I interrupt

"Oh....Rylan's Mom is in the office" she hangs up.

"She is on her way"

As I wait for Sherry the school P.T. comes in. Informs me he had to help with braces, because apparently I went "too fast" when I was showing them this morning.  He had a smug look on his face because he knows I can't stand school P.T.s.  We haven't had good experience in the past......they kinda remind me of pushy salesmen. You know the ones NO ONE likes? that would be him.

Sherry comes and takes me to the P.I. room where I see my very tired boy.

Sherry and Nancy fill me in on Rylan's day and I am excited to hear he had fun.

Rylan and I take off back home, and i can see the kid is beat.

Now my next journey getting out of the parking lot as parents are blocking the road.  Fuck....this is gonna suck.

Of course I curb check trying to squeeze my van out.   I hate people sometimes.

I get Rylan home lay him down to take off his AFOs, put on the sponge and go over his papers for the day.

Within mins Rylan is out.  whats worse is I dont think I am going to get him up, FUCK ME!

Then my phone rings.  Its the school psychologist telling me his eval is due. He explains to me everything that is going to happen and who is going to evaluate.  Again.....the fucking P.T..


NO NO NO!!! AHHHH!!!! People listen!!!! I dont want PT doing anything with him.

The Psych guy comes back telling me that the district needs to evaluate him if there is a need.

TO which I respond "Of course there is a need......but he isn't getting therapy there. SO he doesnt need an Evaluation"

The guy was speechless.

I am not saying school P.T. is wrong. But he could lose his benefit at CRS if he get therapy at school and I REALLY dont wanna lose that.   Plus I just dont like them.

then the phone goes silent.  As I am in Bitch Mom mode.

I call Sherry pretty irritated, but explain my position.  I also let her know I didn't mean to drop the call at that moment.

Is it sad I am ready for a drink now?   Must give Rylan food and meds first,

Here is to getting used to my new schedule, the one my 5th grader sets.