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!

Squeeky Joy

Wow, its been awhile since I have written, I just didn't want send any bad vibes out there.  Every since we have pulled Rylan out of school last August he has been great!!!! With the last day of school around the corner I felt it was safe to share that Rylan has been hospital free for 9 MONTHS!!!!! Sooo exciting.

Cheese!

 

 

As I sit here and listen to him squealing over the same SpongeBob episode he has watched a million times I cant help but feel relaxed. I feel like I finally have some sort of control over the anxiety that's been lurking on my shoulder for 2 years.  It makes all the work we put in this last winter worth it. Our house became Fort Knox and NOBODY was coming inside if they showed any type of sickness. Face masks became a part of Rylan's everyday wardrobe when we had to go for appointments, We were going to do everything possible to keep him healthy!  I don't want to let my guard down completely though as that's when something will happen.

 

Because Rylan has been doing so great, Steven and I decided to plan a trip for him to go see Cars Land in Disney's California Adventure.  We started planning this trip in January, and it was SOOO much fun

 

We met Mater and rode a few rides.

 

It was seriously a blast to be able to have that family time.  We were able to spend some time with Steven's parents as well. The day after Disney we hit up Sea world, it was cold! But it wasn't busy so that was good!

Needless to say we needed that trip, it was nice to be able to get out and not worry about Rylan's breathing.  I know its not going to be this way for long but I will embrace it while I can.

I am not going to lie, I still watch his breathing like a hawk and whip out the Pulse ox if his breathing is questionable. But I like to think that because of my neurosis type behavior, Rylan had a comfortable winter.

Steven and I are starting to see some of the neurological effects as Rylan is getting older......and I will continue to be on top of all of it.  Who doesn't want to have all the medical knowledge???

SO here is to not seeing the inside of the pediatric unit at TMC for an entire year!!!!

 

 

 

No time for sick!!!!

Omg, yeah I am still sick.......Guess who else wanted to join in? Yep you guessed it, Rylan.

A couple days ago I spent most of the day up in Tucson taking care of my mom as she just had surgery. So Rylan got to stay home and have "man time" with dad.  He seemed to be doing great!

Around 6pm he passed out.....if any time he passes out I always want his o2 checked. His oxygen was not bad at all.....but it was lower then normal.  So we sat back and ate dinner all the while i kept an eye on him.

The only thing that came as a red flag to me was that he seemed to be breathing really fast. But he wasn't "belly breathing", when I use the term "belly breathing" im referring to when a child has a hard time breathing they will use their ab muscles to compensate.

Nothing seemed wrong, yet he was breathing fast and his heart rate was high......Steven sent me to bed and was gonna stay up and check on him...everything must have seemed fine because soon our house was fast asleep.....

Until 1am the next morning, I woke up to Rylan grunting, (another sign of troubled breathing, very creepy sounding). So I got up and checked on him, stats were still low and his heart rate still, high. Rylan needed to be changed so I asked Steven to help me out, I had to get up in a few short hours so I went back to bed and Steven (being the great dad he is) stayed up giving Rylan another treatment.  That seemed to hold him over for a couple of hours, then at 530 Rylan woke us up still grunting, so Steven and I opted to put him on some oxygen. I then I called the Pulmonologist.

I was up in Tucson again taking care of my mom, but Steven kept me in the loop.....for the most part it seemed like Rylan was doing ok.

When we saw the doctor he told us it seemed Rylan probably had a mucus plug that caused some atelectsis.....so we just need to treat until he is off the oxygen.  Ok sounds good we can do that........only now......today he has a cough.

So now that momma is able to walk.......I dont need to drive to Tucson, All I have to do is focus on healing my child.......and maybe getting some rest.

So here is to Rylan getting better and off oxygen in time for thanksgiving! 

Lets Eat, Breathe and be Married

Wow....two months can fly by quick. It's crazy how much can happen in a short time frame.

Since pulling Rylan out of school and placing him in the home bound program.....man has life finally got a little easier!

Well It took a little time to get Rylan in the program. Rylan is the first kid to have to do this is Sahuarita so of course everyone had to have a say. After a couple of meetings and driving up to Tucson to get letters from doctors, as well as lots of paperwork.....Rylan now has school at home.

Let me tell you he has been doing AWESOME! (knock on wood). He has been stating better then he has in a long time!

It's been great! But then the special needs mommy curse rears its ugly head and I keep thinking....he has been healthy for TOO long.......whats gonna hit him and when?

If your anything like Steven, as you are reading this your thinking he has been healthy enjoy it! Trust me I am! But you also have to understand that Rylan has a tendency to get sick out of no where!

Well the entire month of October Rylan was kept in lock down...... No No it wasn't as bad as it sounds.  Steven and I were finally tying the knot and Rylan needed to stay healthy.....the safest way to ensure this happens is by not having him go anywhere and making sure all that enter our house were healthy and washed their hands prior to touching Rylan.

We did plenty of things to keep Rylan occupied. 

Reading Spongebob

Watched Football

He even made GREAT accomplishments with schooling! He is communicating with his head switch better now!

That leads us up to November 1st......the day Steven and I got married!!!! I was lucky enough I had a healthy little boy to be our "Ring Security"

Now that all the smoke is clear, the desert is finally starting to feel like winter.  Homes are starting to gear up for the holidays.....Im still trying to keep up on keeping Rylan healthy........But I have failed on keeping myself healthy as I am now battling allergies....or a cold......not sure yet.......so now I get to rock a very stylish face mask when caring for Rylan when my wonderful husband (hee hee I said husband) is at work.

new findings and beginnings

The beginning of the school year was a rough one. As soon as Rylan made his way through the Sahuarita Primary school doors, it seemed like he became a magnet for every virus and germ. He ended up going to school a total of three days, needing a hospital trip after two.

As many of you know Steven and I have made the choice to pull him out of school for right now. It just seemed like he was ALWAYS sick!

It was a tough choice, but we told ourselves if he was always going to be sick how much school was he actually going to attend? We had our wedding coming up and So many fun filled family activities at the end of the year, we didnt want him to be miserable.

So homebound it is, For those who do not know to be Homebound means that Rylan will be receiving  a total of 4 hours a week of schooling provided at home.  A certified person will be coming out to work with him.  These people are going to be the special education director, his teacher, speech therapist, and an occupational therapist.  But until this was started we got to hangout!

Rylan has been doing AWESOME! Since he has been feeling great he has been doing soooo many new things. He is vocalizing more, expressing more, etc,etc. It's been GREAT!

Well I have a love for Katy Perry...I admit it. I was soooooo excited to get it her movie. As soon as I put it in, Rylan took it over. and was in LOVE!

SO needless to say we have watched the movie so many times I have it almost memorized.

But today marks day one of his homebound services. Its sooo awesome to see how much Rylan loves to learn and more importantly how smart he is!  I stay in another room so Rylan will focus on his task, but listening to him use the IPAD to answer questions was remarkable.

Miss Rachel teaching Rylan

 

It's so nice to be able to experience this new journey with Rylan.

The age of Isolation anxiety

Isolation.....a term I have come to know quite well. Isolation is defined as

an act or instance of isolating, the state of being isolated. 

I know many special needs moms have been in this boat at one point. It sucks. 

I get frustrated from time to time cause I cant just load up and go somewhere. So many factors determine whether or not we can go out as a family. Every thing from the weather, to how crowded where we are going is. It can be a little depressing.

Here is why I feel Isolated:

Well we decided to let Rylan go back to school part time.  

That didnt last long.He went to school again and That night I noticed Rylan was stating all over the place.  I wasn't to fond of this. So I kept an eye on him, around 9 or 10 o'clock I went into his room to check on him. His stats were low. 

I call Steven and He comes home to take Rylan to the hospital. I took my anxiety meds and I was in no condition to drive.  So off my boys went. 

Around 5 am they returned home. Rylan was on 2 liters of oxygen and running a fever. Neither Boy had slept so Steven went to bed and I took care of Rylan with my main focus breaking the fever. 

That evening Rylan broke his fever and we worked on getting him off the oxygen.  After 3 days he was able to come off completely.

But then that led Steven and I to face the fact that we were going to have to do the inevitable.  Rylan was not going to return to school. He is being placed in the Home Bound program.

Now as a stay at home mom you are home all the time regardless. But with your child in school you have that 5 or 6 hours of freedom that you can do what you want. Run to the store, get your hair done, etc. 

With Rylan no longer in school, this was gonna be a rare treat for me. I know this and Its what is best for my son. 

I have managed to be diagnosed with Anxiety Disorder. After all the ups and downs with Rylan it has begun to take its toll on my body.  I know some people look at anxiety as a bullcrap disorder.....but let me put it this way. There has been days where have I cleaned my entire 3 bedroom/ 2 bathroom house, with a front room and living room, washed all sheets and made beds, towels and laundry in one day.  Because I cant sit still. Not only that I have begun to have health issues.

Its not a bad thing but when you have this disorder and you main focus is your special needs child and nothing else.....it makes things worse. 

I have begun falling in a dark hole, where I feel like I have my son in a bubble. I am isolating myself in my house because Im to worried about the germs everywhere else.

I could use a good massage.....

 

Gut instincts and difficult choices

Yesterday was the first day of 2nd grade for Rylan, full of excitement and wonder I took him to school to enjoy.

Come 130 I went and picked him up. He was doing great! We got home and his nurse was there waiting. It seemed like a typical evening.

However I have REALLY bad paranoia when it comes to Rylan and his exposure to germs. As crazy as it sounds my gut always seems to tell me something is wrong with him. Way before it even starts to show.

Sure enough this time my gut didn't let me down. 5:00 pm comes around and it is time for his favorite nurse to leave, at this exact moment he begins to growl. No Not on purpose, but he proceeds to hold saliva in the back of his throat and keep it there. It is by far the most aggravating sound, you just want to cough it up for him. His nurse stays for about 30 mins working on clearing him up before she takes off.

After she leaves Rylan falls asleep. It was early, but it didn't bother me because he only got 5 hours of sleep the night before and had a busy day.

I sat beside him and watched tv while he slept.......He sounded like crap. I tried not to stress to bad about it because he still had a 6:00 treatment, and most of the time it does its job on clearing him out.

So I set him up and give him the treatment and he fails to wake up at all.  30 mins after the treatment I notice his respiratory rate is faster then normal.  So I grab the pulse ox. He is at 93 asleep. Not terrible, but not ideal. He still sounds like garbage.

Now you might be thinking...."wow she sounds kinda nuts". In a way I am. My anxiety for Rylan's breathing is stemmed from the many times I have sat in a hospital room praying his lungs will gain some strength. I also have become a worrier. Not only do I worry about Rylan, Steven as well. Earlier that evening Steven called me letting me know his phone was broke. So I had no way to contact him.

Come 1130ish I woke up.  Steven is normally home at this time, and he wasn't. So yes Miss Anxiety reared her ugly head. Especially since I had no way to call and see if he was ok.  Well since I was up I went ahead and checked on Rylan. The pulse Ox we have always takes a couple mins to get an accurate reading.

So I gave it about 10 mins and checked on him again. Oxygen is down to 92, still breathing fast, and a high heart rate. Im pretty confident now something is wrong.  I go look to see if Steven is home yet. Nope.

Come midnight our "bangbus" (as we call it), pulls into the drive and I hear the welcoming sound of the garage door open. So I went out to meet him.

I fill him in on whats been going on with Rylan and he comes to take a look and give his opinion, he agrees there is something off but he is ok and encourages my spazzing butt to go to bed.

After he does his winding down Steven comes to bed, and tells me something I NEVER thought he would have considered. We should home school Rylan. Its been one day and he is already sick, this doesn't give him warm fuzzes about cold and flu season.

This breaks my heart a little because school gives him so much joy.  No mom wants to take away one of the few things their child looks forward too. But it looks like there really isnt much of a choice.

We went to bed with the intention of seeing how he was in the morning. Come 4am I hear Rylan grunting alot, but he was laughing. I check his stats to see how he was doing 87% oxygen now. REALLY?

Well since I know I can be overly paranoid about Rylan, I asked Steven for his opinion.  Rylan was needing to be seen.  The only problem is we both have had 3 hours of sleep and were in no condition to drive all the way to TMC.  So we pulled out the concentrator and threw some oxygen on him. I know this sounds horrible but we have been told this is ok.  He seemed to be fine on 2 liters, any higher we would have taken him in right then.

So back to bed we went and got up about 3 hours later, to take Rylan in. Steven started to have his reservations because Rylan was laughing and happy. I still wanted to go to the ER because he was still breathing fast and needing oxygen.

I called his pulmonologist asking for their opinion, after about an hour of not hearing from them, we were en route to the hospital.

I know it seems strange that we would have Rylan obviously not doing good and take our time going to get help. Fear not we both know what we are doing and have Everything we need to keep his O2 up at home.  He didn't seem distressed so we weren't stressing.

As soon as we got on the freeway the pulmonologist calls me and lets me know our choice is good. Go to the hospital.  We get to the ER and they start to triage him right away.

As soon as the nurse puts the pulse ox his heart rate his beeping loud alerting its too high. Yet his O2 went up to 98. Steven and I were a little flabbergasted, then it dropped, we were not disappointed. The nurse also mentioned it started to feel like he was running a fever. Awesome.


So we sit and wait, they have him on 2 liters of oxygen, and gave him stuff for pain. 3 hours later the doc shows up. She goes over his history and bolts, Rylan then gets an x-ray and we wait. A nurse comes in and lets us know they are going to turn his oxygen off and see how he does on room air, he does fine. Going on hour 6 in the room I go out and ask if they know what is going on.  Thats when we were finally informed he was being admitted.

The doctor from the floor came in to talk with us filling us in on the x-ray results and getting info for the floor. As he is talking to us Rylan decides to drop to 70% oxygen (he likes to keep us on our toes). 

 as always, we were brought to our room and told the game plan. Basically they are going to treat Rylan for his chronic pulmonary problems, a possible asthma exacerbation, or a pneumonia.

So I sit here now in his hospital room listening to beeping of machines, the gently whisper of oxygen, and spongebob on the tv.