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.
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!