Monday, August 19, 2013

Boiling Blood

I feel the need to share my feeling regarding a letter that a parent received that is spreading all over the internet. If you have not had a chance to read it......well here ya go.

This sickens me beyond belief........The cowardness of this woman is UNBELIEVABLE.  
Now I know I have a VERY short fuse when it comes to Rylan not being treated fairly.  However this doesn't just stem to my son, but to all the other special needs children as well......and this is not to be confused as a "feel sorry for us", but it is a "this is real life, believe it or not".
Now I look at my daily life with Rylan, and when I first read this I couldn't help but put myself in this poor woman's shoes.   My first thought was I would be in jail for murder when I found out who wrote this.  Then the reasonable side of me thought well that is selfish to think about stooping so low when I do have a kid that needs me.  SO one word describes this horrid woman.....IGNORANT.
There are sooo many different disabilities in this world, and I promise the majority NEVER wished it upon there kids.  I know I most certainly did not.  When I first found out I was pregnant with a boy, I had hopes of playing ball with him and taking him camping and racing go carts.  Not once did I think "I hope my son is disabled and we have to watch him suffer all the time".
As parents we want the best for our kids,  So why should those being special not get that?
I can guarantee that this mom never asked this for her son, she is trying to give him the best life possible, Now most and I repeat MOST kids with disabilities are destined to pass on before there parents, and as being told myself this news it is heartbreaking and scary.   To know that this is your life and it is the inevitable.  SO to be told that if this parent was to die NO ONE would want him......WOW.   TO be told this kid needs to be euthanized....well to this cowardly mother I want to give you a double birdy kiss my ass!!! HOW DARE YOU!! Everyday I have with my son is a miracle! I don't take advantage of having my son.
Ugh.....even as I am writing this im sooo angry I am losing my train of I said im putting myself in her shoes........When parents are this ignorant it makes me so mad, I have been told different stories on numerous occasions of what my other "special" parents have had to deal with....its sad.  Yes you may have a healthy child, but what if that got taken away from you? What if you never got to see your kid graduate high school or get married?  What if you knew you would NEVER have grandchildren?   You would be heart broken.......keep that in mind.
SO when you see a parent like this educate yourself! NO its NOT rude to come up and ask if your curious as long as you do it with a little tact.  I know I personally encourage it, don't treat my son like he is the plague...and if you have kids teach them about the special people on earth. 
I know on plenty occasions we have gone to dinner with Rylan and the hostess acts like seating us where his wheelchair will fit is a big ordeal (ahem Toby Keith's).  I know Rylan has freaked out in numerous places, I know its annoying.  I can tell you at the point and time I am so frustrated and embarrassed because I know your saying mean things.....But I don't want to not allow my son to experience life.
I know this post is a little all over the place, but all im a trying to say is before you feel the need to pass judgment on a family and there special kid. Keep in mind they have had a really rough journey and its not over.....and in cases like mine its only gonna get rougher.  Be encouraging, I know I personally need to know that I have people I can lean on when the time comes or I need it....Plus hey if you attempt to get to know my kid or any special kid you may have come across, you would be able to meet true miracles and they most genuine amazing human beings ever.   I know I have been told this about my angel.....

Saturday, August 17, 2013

3 is a magic number

Sooooo sleepy, Soooooo tired, Soooooo exhausted.  I tried to fall asleep early yesterday, once it seemed to have calmed down in the room.  Rylan fell asleep really early I am assuming his poor little body was trying to heal up.  Once Steven made it to the room around 1130, I felt content enough to fall asleep. 

Around 330 Respitory therapy came in to do a treatment.  However she felt the need to talk as though there was NO one sleeping in the room.

Well on a normal day at home I wake up if a mouse farts, so of course this woman's need to converse with my sleeping child with a normal tone of voice was going to wake me.......Then it woke Rylan. 

Now the thing about Rylan is that just because he cant walk, the kid can VERY much move. So when I found out he was awake I got up and put in a movie for him then attempted to go to back to sleep. I no more then closed my eyes when I hear a scraping.......

Now I should add in to bring some up to date, that Rylan feel out of his bed in the ICU a year ago. So now he is considered a fall risk, and has to have the bed closed off with seizure pads. As well as Rylan's IV is located on his left foot.

So when I awoke to this "scraping sound"  I look up at his bed and all I see is his left leg going up in the air and scraping against the padding as he is pushing himself further and further down in the bed. 

So I get up and fix him, then lay down again.........

Then the nurse comes in and starts comforting Rylan, again I awake to this get up and change him and talk to him. Then attempt to go lay down again.......

Only to be interrupted by Rylan fussing and kicking around.  Honestly, the two year old inside me was kicking and screaming "I just wanna sleep".  But I get up and crawl into the bed with him, which does relax him and he does eventually close his eyes.  So once he seems content I crawl back into MY bed.....

No sooner did I lay my head down when the doctor came in.  So up I went again to talk to them, by this time I decided to give up on sleep.

So I wash my face and wait for Steven to wake up.  Around 730 Rylan was due for another treatment so in walks our favorite RT Pam!!! Yeah!!!!!  So her and I sit and chat which does eventually wake Steven out of his sleep.

After a little persuasion he was out the door to buy coffee. Thank god!

He comes back and we nerd it up (play computer games) while we drink our morning brew.  Then I receive a text from my step-mom Maggie and my Bio-Dad asking if we wanted breakfast burritos.....uh....YEAH!

SO when they get here I chow down on the best tasting Chorizo breakfast burrito with my Dunkin Donuts coffee.  They drove all the way from surprise......they are the best.  SO as we are eating my Mom comes by as we were all able to have a nice visit

After my mom left Rylan's Tata and Nana stuck around, which was nice because they cant be here all week as they are from out of town.  Shortly after my Mom left my Tia Susan came by as well...

When it was time for Tia Susan to leave Maggie and I took off as well to run to our house so I could shower and we could pick up SallyEthyl and bring Rylan's chair back.....By the time we headed back up it was lunch time.  SO Eegees's it was. 
As we were eating lunch Mary and Rebecca stopped by, it was a short visit as we needed to load him up and take him for a walk. They joined us for the first part of the walk, which was cut short by Rylan's pulmo doc showing up.....
He tells me that he believes it was Atelectasis with a little Pneumonia and that he seemed to be doing good. that's a good sign to me. SO we went off on our walk, Pan recommended it because it got him up in his chair and the new environment may help him expand those lungs easier.
When we came back we had a nice visit from my brother with my mom.  This made me happy as it was the first time (in general) that he has come up to see Rylan while he has been in.......I hope this is a sign he is coming back to us!  Honestly I mean that in a NON creepy way. 
So with Rylan on room air for the majority of the day our basis of going home is.......will he make it through the night off of it?
I ran to go to my groups get together for an hour, Steven encouraged it.  It was amazing to get some lady time! When I came back Rylan seems to be ok......however I do hear a lot of warning beeps........I am just gonna sit right where I am at because I know that once I look at the monitor im gonna worry......
Well the incredible rude and loud RT is in here....time to practice my deep breaths. 

Friday, August 16, 2013

Day 2

Deep breath.........Chaos, trips to the hospital are ALWAYS chaos.  This morning I awoke to the sound of Rylan's monitor alarms.  It wasn't the warning one that dings slightly every few mins it was the full blown "get your ass in here" one. It's super high pitched and annoying. My fellow parents who have been in the hospital know what I am talking about lol.

I got up and checked on Rylan, he was just laying in bed grunting a lot. I felt him and he was extremely warm.  I grabbed the nurse and BAM! 103 degree fever.  That began the morning.

After the motrin kicked in Rylan was finally comfortable enough to rest. With the help of a cool washcloth and ice packs.

Well I am gonna make this short......between the hospital doctors, his pediatrician, and pulmonologist we have 3 different things going on.

Scenario 1 : The hospital Doctors

  Yes we know appendicitis was a MAJOR concern, but after the cat scan results came back they noticed he had some stuff going on in the bottom of his lungs.  SO they though pneumonia and began to treat as such.

Scenario 2 : The pediatrician

When she arrived she was totally on board with the entire pneumonia, but then she tells me that Rylan has 0 bowl sounds and he just ate. So she didn't want to put it past him that he has a blockage in his intestines. So the plan was to skip his next feeding and see how he sounds right before the one after that.  If there were STILL no bowl sounds surgery would be called.  Of course this made my heart sink as if he had pneumonia and had to go under anesthesia this was not going to be a good outcome.

Scenario 3: The pulmonologist

He believed there was NO pneumonia but atelectasis.  Now  they are leaning on that.

Well here we are thinking that we had somewhat of a game plan. When I went to go give him his meds at 12:00, I opened up his tube and Rylan let out a giggle followed by vomit. Sooooooo now we are back to stomach issues. 

So here we are Rylan has an IV going and isn't allowed to eat, they say his lungs sound good.  They think it might be viral.....even though the antibiotics have helped allowed.  Still hasn't broke his fever. 

This momma is TIRED

Thursday, August 15, 2013

Well sometimes you have to keep your mouth shut

So my husband called it.........When I got excited at our year long accomplishment and decided to announce it, Steven warned me. No good comes from acknowledging Rylan's health. 

Well after I got sick, Steven got sick.  Since we were both feeling better we were under the illusion that we made it without Rylan being affected. Well we could not be more wrong.

They say Mothers are usually very in tune with their child. When they are special needs you typically are a little MORE. Due to the fact that most can not speak you have to pick up on the little hints, whether it be a change in demeanor or change in breathing, something so small as the way they are looking at something, either way you know.

This morning Rylan woke me up, my gut told me he was not himself. He was extremely irritable and nothing was cheering him up.  We went through our normal routine, bath, treatment.  However my gut told me to check Rylan's stats after his morning treatment.  Around this time Steven woke up and did his morning routine. Only to be bugged in a few mins by me, I always get Steven's opinion on Rylan because I have a tendency to jump the gun.

Well out came the oxygen, his stats did not look good. His oxygen levels were low and his heart rate was extremely high. I was told before a high heart rate was a sign of pain, but the low O2? Not a good sign.

After about 30 mins on oxygen, and Madagascar on TV, my boy was smiling.  I went ahead and called the Pulmonologist. They told me due to everything Rylan was doing, we needed to head to the ER.

Steven went ahead and took off with Rylan while I lagged behind to take care of a couple things.  After I took care of what I needed to take care of I headed of to the hospital.  When we got there we waited around for 3 hours. The Doctor took a chest xray came back and told us it was clear.  She seemed at a lost, lungs were clear, ears were fine, throat was fine.......yet he needed oxygen. She went ahead and called the pulmo to get their opinion.  Which was an antibiotic and send us home.

So off we went, Steven went to fill the script and I brought Rylan home to take care of what we needed to do (as far as routine goes). 

Well all SEEMED well, got home and took care of what needed to be taken care of.  Rylan was happy, super happy.  He was laughing yet he sounded a little junky but I just attributed that to that fact that he had a virus.....or so it seemed.

After Steven left I went ahead and laid Rylan down to get him comfortable, so we can watch the Bears game. That's when you can say "shit" hit the fan.  Rylan all of a sudden freaked out not in a screaming sort of way but a grunting and pushing way. (it's weird I know).  I called Steven and my mom looking for comfort or advice and realized they are both 30 miles away and really cant help me.  Based off of what I was telling Steven and our past history we thought maybe he is impacted and trying to get it out.  So Steven recommends that I try to give him a suppository. 

Well I do.........that only seemed to make everything worse.  He was grunting and yelling, turning red, this point I start to cry. I don't know what to do I feel so helpless.  When nothing happens Steven then recommends an enema, so I call the one person that lives close and is always there.......Rebecca.  Without hesitation she goes (thank you Rebecca!) and picks them up with Yep that's a great friend.

When I finally get him to relax I keep the pulse ox on him to monitor his heart rate. Yep even while he is asleep it is super high......unfortunately the 6:00 hour was rolling around which meant it was time for a treatment. As soon as I lifted him up to get a treatment Rylan freaked out again, when I started the treatment it was a whole new level so 911 was then called.

Once we got in the ambulance and were en route the medic tells me that his high heart rate is still VERY much there but then you mix it with his low blood pressure, it sometimes means SHOCK.   My heart hit the floor, I asked what would cause that and he starts listing a ton of things, things I would have no idea how it would happen. 

We get to the hospital Rylan is uncomfortable whenever he is moved.  They tell us that a stomach X-ray has been ordered.  When that comes back and it is normal the doc begins to press on his stomach and Rylan wretches in pain.......lay him down....wretches in she calls for blood work.  When she came back just a few hours came back with appendicitis.  

So the cat scan is set and off to our room..........Im exhausted and worried.  

Tuesday, August 6, 2013

Year 1

I write this in bed with a chest on fire and a high hope I will be able to breath soon.  Now as we know I have no luck with anything. As I came down with Bronchitis shortly after announcing Rylan just had his first straight year not being in the hospital! AT ALL!!!!! WHOOP!!!!!  What is funny is they tried to tell me at the urgent care that it was pneumonia at first and as I was walking out told me they were wrong....comforting.

Well this is awesome as I am VERY contagious, and who was I taking care prior to feeling like crap?? Yep my weakened immune system child.  The last words spoken to me were "watch him like a hawk".  So this is great.   But my Mom and Steven both attempted to comfort me in letting me know that they truly believe he will be fine. But I count help but worry, as we went to fill my scripts I kept texting Rebecca asking how he was doing with every response being fine. SO I guess part of me needs to relax and listen to my Husband and Mother.

Even though today I am still worried. Steven and I both agreed to keep me in our room until I have been on antibiotics for at least 24 hours.  I hear Rylan happy and laughing, yet I'm still so nervous. Ugh.......

But happy news! Not only did Rylan have his anniversary Steven and I have our first wedding anniversary coming up soon too! I am probably throwing bad luck out there but its been a very wonderful year without stress and anxiety around so much. I feel like we have grown tighter as a family.  I know our trips to that dreaded place are FAR from over,  I just know to appreciate the time now.

With Rylan doing so well he has been able to do more things.  One thing he has gotten amazing at is the wonderful therapy Tricycle.  He LOVES it so much!!  Rylan's physical therapist submitted his name and he was put on a waiting list while we wait for enough donations to come in to pay for it, OR we pay for it ourselves. 

Well that's where my big hearted friend Krissi comes in.
That's Krissi!

She called me up and wanted to set up a bike/car wash to raise donations. We did. 

We raised enough to get the bike! With the help of everyone that spread the word and showed up!
We submitted everything and waiting on them! I am soooooo excited!

We have branched into things we do at home as well, such as coloring. I drove all the way up to Hobby Lobby in Tucson to get this giant SpongeBob coloring book just for him!

There is also some handicapped swings located down the road from our house!!! The fun is never ending now!

All in all I am so happy with how much we have been able to do this summer let alone this last year together!  Just the smiles we get doing something fun makes all the pain so much more worth it.

We were also able to get family pictures thanks to my wonderful friend Bre! Rylan looks awesome!

Well I guess Ill go back to resting and trying to kick this.  Just send those Positive vibes Rylan stays good!