The clipping of tendons part 1

5 am the buzzing of an alarm rings in Steven and my ears. So we dreadfully get up and get moving being Rylan had to be at the hospital in a couple hours.

We run through the motions, I shower, he makes coffee and smokes. Then I bathe Rylan and Steven gets himself ready, We finish up with Rylan and get ready to leave.

We arrive at The University of Arizona Medical Center around 7:15. We were confirmed his surgery was at 9 am. I go to the desk sign him in and then we get taken to registeration.

Then a fire alarm goes off.....So out the door we go to just turn around and go back in. Apparently security cleared we could stay. This is our first time at UMC for surgery so we were not sure what to expect.

The PCT pulls us back to the bed waiting for him. At first glance it was a touching set up. They had it ready for him with alittle award on the pillow.  We put Rylan on the bed and start going through the motions.

Steven gets Rylan in his hospital gown and I answer the nurses questions. We wait and Dr. Valencia's surgical assistant comes and talks to us, then the anesthesia docs talk to us. Everyone seemed to be on track.

Thats when the nurse walked in. Dr. Valencia wasn't going to be in till 12. Here we are at 900 and the doctor wasnt going to be until 12. I instantly became infuriated. Thank goodness Steven was there to calm me down.

I call Dr. Valencias office to find out what is going on....and they were clueless and rude to say the least. So I asked Dr. Valencia to call me.

When he did we all came to the conclusion that there was some "miscommunication". Seriously is it too much to ask to have ONE of Rylan's surgeries go on time? As you remember his mickey button surgery went the same way

Rylan starts to become fussy. So I call the clinic Dr. Valencia is at and ask if he is running on time. Of course nobody could give me a straight answer so I finally had it.

Now here we are still waiting. My temper is getting worse with each passing min.

Tendon clipping

7 days and counting......7 long days.

My little boy is going under the knife AGAIN! Even though I know its a long term investment having him go through this, I cant shake away my nerves.

  Rylan's lungs have been sooo good. I guess alot of the nervousness comes from the fact I feel like we are weakening his lungs with this surgery and then he starts school.  I shouldn't lie and say nervousness.......Im flat out SCARED.

Your probably wondering what he is going into surgery for..... He is going in to get his tendons clipped in his legs. Due to his CP he has developed contractors in his leg muscles. meaning he cannot stretch his leg out straight due to the muscles being so tight. As Rylan's bones grow......his muscles wont. Which doesn't give his bones a lot of room to stretch out. As this happens the bones are at a high risk of becoming contracted themselves. Once this happens....there is nothing that can be done.

So I opted to have this surgery done sooner then later.

I have really bad anxiety which got worse when I was told we needed to come up with a game plan for Rylan because they weren't to confident how many more respiratory viruses his lungs can handle. 

So here I am trying not to stress.......and hitting my E-cigarette like crazy....and now realizing I am going to need more juice......

So if I could get some prayers out there that his lungs will stay strong and he will power through everything like a champ and that he will breeze through the respiratory season with ease. Never in my life Have i dreaded the upcoming holiday season as much as I do now.

Atelectasis and the selfish mom

Well I think this time the title says it all.

A couple of days ago Rylan started acting tired, abnormally tired. So my mommy intuition kicked in and I threw the pulse ox on him and my fears were confirmed. His oxygen was low. While it wasn't scary low, it was low enough for me to know something is going on.

I have spent the last few days hovering and watching Rylan like a hawk. The pulse ox basically lives on his finger, Im watching it go to 97,96, 95......89.......back up again. My anxiety decides to show its face. Great. I look at him, he is breathing comfortably, not even belly breathing.... Now its weird.

Well on Saturday Steven and I were going to go to a wedding and Rylan was going to hang out with one of his nurses. When she got to our house I explained to her what was going on and she did her evaluation. She said she heard nothing in the lungs, so she was confused.......but here is the kicker.......When we put him to bed his stats go up to 96-97.

As most of you may know it is normal for the human body to destat. when sleeping do shallow breathing. So this confused us further.

Last night Rylan had a rough night. He had a coughing fit all night. LITERALLY ALL NIGHT.

Today I wanted to go with two girlfriends of mine to a bridal shop.  But due to last nights episode, I needed to get him seen.

Dr. Riordan, this woman is amazing

So off to the pulmonologist we go. I explain to Dr. Riordan whats been going on and she listens. Within 30 seconds she hears crackling in both of Rylan's lower lobes. Conclusion.....Atelectasis.

As some of you may have recalled Rylan had Atelectasis when he was rushed to the hospital earlier this year. So now I went from Anxiety ridden to flat out PARANOID.
She instructed me to put him on Q2 (which in the experienced lung problem world mean breathing treatments every 2 hours). Needless to say I can say goodbye to sleep tonight.

This also means that when my step-daughter arrives tomorrow.....Rylan and I wouldn't be there. A long car ride wouldn't be good for him.  So I got really bummed, I haven't seen Amaryssa in a year. I really wanted us there.  Im grateful for my AMAZING mother. She so unselfishly volunteered to drive to our house and stay with Rylan till we got home and do his treatments for us as well this way I could meet her when she got here alongside Steven.

Whereas I feel REALLY guilty about that.  Steven made me feel better,  Reminding me that Rylan loves his grandma time.

Your probably thinking where does the selfish mom come in? Well I kinda had a "poor me" pity party after the appointment. When I first had Rylan I joined support groups and I was hearing how lonely most of the people were. It never really started affecting me until recently.

I have missed a friends funeral, birthday parties, and numerous other activities for the sake of Rylan's health. 

It does get frustrating. VERY frustrating. I do have an AMAZING support system. But I do miss the being able to meet with friends freely. Or going to a kids birthday party without fear of germs.

Its lonely......as I listen to my amazing little boy continue to cough nearby.  I am thankful for all the things I DO have.
 
Steven, my Mom and Rebecca......I dont know what I would do without you.

educating

I know not a lot of people read this.....but thats ok I need to express my thoughts regardless......after I recently posted a link about being a special needs parent I got thinking....
    Its very frustrating at times having a kid with special needs......not because I have a kid with special needs but because of everyone else.
    Rylan doesnt walk, he doesnt talk....with words. But he still has a bubbly soul and an AWESOME personality as well as a laugh that is sooo contagious he can get a room rolling in laughter however one thing that gets to me more then anything is when people dont know how to treat him like a regular kid....
   Its not only for strangers but for family as well.......there have been family members that dont intract with him and ignore him. As far as strangers go....you've got the stares...especially from little kids.
   We will cover the stranger issue first...I know little kids will stare but the issue stems from the parents....and those of you reading this with kids take a moment to think......do you let your kids stare at the little girl with the strange walk wearing a bib cause she drools? Or the little boy in the wheelchair looking at toys? This is one thing that boils my blood sooooooo quickly. We have been places where the kids walk away from their parents and stand about a foot away staring at Rylan.......I look at the parents who are totally oblivious. When does the kid stop staring? When the parent finally yells at them to leave.
  Family I wont get into too much.....accept it breaks my heart to see Rylan get excited to see people and they dont talk to him. Or say Hi and thats it. To me this is UNEXCEPTABLE. You are family. When you interact with other kids just fine if the roles were reversed I would be considered horrible.....there is no reason the same cant apply in his case.
   My biggest wish is for parents to EDUCATE their children and family to educate themselves on special kids/people. Because Rylan is just like every other kid.
   Rylan doesnt like to get up in the morning, loves cartoons (especially Spongebob), He gets his clothes from the same stores your kids get theirs, he likes sports, and music, loves the outdoors.......So to me take away the wheelchair and learn his language.....how is he any different? How is he any less special? and for those who will have a problem with what I wrote sit back and think about it...without making excuses and how far would this treatment fly if it was YOUR "normal" child being treated this way?

The number 77

Well this winter has been great....Rylan was doing great......I guess alittle too great.  Im writing this in my sons ICU room at the hospital listening to the sounds of the air escaping Rylan's Bi-pap mask and the faint ringing of alarms in another childs room somewhere down the hall......But lets go back to the beginning to where this all began......
       Rylan was battling a few viruses......which I thought we were staying on top of. We have taken him to the doctor and stayed on top of his breathing treatments and vest treatments..
       Thursday morning at about 1am Rylan decided he wanted to wake up for the day. So as habit dictates I went in his room and changed him and put on cartoons for him to watch and I went back to bed. 530 comes around and Steven and I get up and start Rylan's morning routine (a vest treatment with albuterol, feeding and the normal getting dressed). When all was complete we loaded him up and took him to school.
         The day came and went and we went on our regular activities...Steven headed to work and I headed to go pick Rylan up from school.
          I got the run down from Rebecca and put Rylan in the car...he seemed happy but tired.....being he got up at 1am I couldnt blame him.
          By the time I got home and turned off the car I could hear Rylan breathing very rapidly in the back seat and he was sleeping.......I wasnt too comfortable with his breathing so I pulled out his pulse ox just to see where his oxygen level was at......When I put it on the reading I instantly got was 77........I found that hard to believe so I put it on myself to check......my read 98. So I put it back on Rylan but I tryed a different finger on the other hand......77 again. I call Steven really quick to let him know we are heading to the hospital by ambulance. I hang up and call 911.
           I never took Rylan out of the car due to the fact he was gasping for air and passed out..So I stood outside by Rylan until the ambulance arrived....
           They pulled in front of the house and jumped out and ran to Rylan. They checked with their pulse ox.....he was at 80% oxygen.  I get pushed aside to answer questions and I watch as they have all 4 doors open on the truck talking to Rylan....Throwing oxygen on him and getting ready to put him on the gurney.
             All the while im alittle shaken...even though I was calm its always alittle nerve wracking to see your child get loaded in an ambulance to get rushed to the hospital. I grab what we need and load in with him and we go....
              While in the ambulance I learn he is on 15 liters of oxygen and barely at 92-94%.....and he is febrile with a 101 degree temp. We arrive at the the hospital and his temp went up and his breathing got worse......yet we had to wait for TMC to get him over to the childrens area.....I wasnt to happy.



waiting to go to the Childrens area

We finally get to the area and we meet up with Steven....they get him in a room and start breathing treatments and his extreme amounts of oxygen, we eventually get xrays and so forth....once his IV was placed bloodwork was taken and the only thing we were waiting on was a room in the ICU. Steven and I ran home to get a bag and shower as my mom stayed with him.


attempting to place IV in the emergency room

 On the way back from home I took the truck because Steven needed to get back to work. I call my mom on the way to see how he is doing and I hear his gasping in the background....I REALLY start to worry. I get to the hospital and I get to his room and they have both of the residents in there, his nurse and the respitory therapist circling around his bed talking about what to do next as he is now on 100%oxygen with continuous albuterol still gasping for air.
   One of the doctors goes on to tell me that he hears no air circulating in his right lung and there is fluid in his left lung.....they are going to try using the bipap machine with the oxygen and albuterol. If there is no results with that then there will be talk of intubating him.  Needless to say that scared the crap  out of me. I just watched as the doctors called a bipap machine up stat.

right after they added the Bi-pap

  They stood by to make sure there was going to be an improvement......thankfully there was. For those of you who dont know what the Bi-paps benefit is to a kid in Rylans condition.....it pressurizes the airway and forces the lungs to open.  after about an hour on it he was finally content enough to try and sleep....

 Now the start of lots of antibiotics and bloodwork....Rylan has been poked to many times and we are barely on day 2. So I try to make sure he is clean (spongebaths are great) and comfortable.....I want to him rest as much as possible

Not to mention his need for a good deep suctioning

Thats all the info we have now.....stay tuned.

Oxygen anxiety

I pour a glass of wine and sit at the computer....Rylan just had his last vest treatment for the night and he is digesting his last feeding.  I log online and read about someone having a good day at work, or someones expecting a baby, etc......I browse through photos of my friends and their night lives....and realize it will never be that easy for me ever again....its gonna get harder.

 I glance at Rylan and realize he is the best thing thats ever happened to me. He has made the person I am today. There is just one thing I stress about consistently...and its wearing me down.

Rylan's oxygen is consistently going up and down.......you check him in the morning 98...oh wait....95....93....90!......96 now....ok.....and I cannot help but freak....if he is destating before bed I dont sleep. Im up every hour checking on him......positioning him.....wondering when will I need to take him to the hospital.

Rylan has been doing VERY well here lately. Yet instead of relaxing im stressing.....cant let my guard down. The State of Arizona took away the nursing I had so its up to me to keep an eye on him. Which I do not mind at all! But it can be overwhelming.

I also sit back and think when did I get like this??? Not only am I stressing about Rylan's O2 constantly. I have become the biggest germ phobic. I cant allow my house to get dirty at all......and i cringe at taking him to doctors appts knowing there are sick kids around...(and all I can see is them coughing without covering their mouths, wiping their noses with their hands and touching door handles...). I even tell his aide at school everyday to put a mask on him if there is a sick kid in his class, oh there joining another class for art projects? put a mask on. I guess living in a hospital and almost losing your child will do that to you.

The part that sucks the most about all this? Is I feel like no one besides Steven FULLY understands what is going on in my head. I dont have the energy to really socialize anymore and have come to the realization that I have lost some friends due to it.  But I am forever grateful to the friends and family that have stuck by. 

Well now that I have got this off of my chest....I got some suctioning to do. Then Ill be checking some O2 stats and finishing my glass of wine...before I try to go to bed for the evening. 

Nissen wrap and Gtube or BUST!

Well on Wednesday morning we headed to TMC for Rylans most serious procedure yet.  We got there and they took us straight back to the tiny little rooms you wait in till they take you away. Steven went ahead and got Rylan in his gown while I talked to the nurse and handled the paper work.
  Well low and behold we weren't let down.....the nurse said there was an issue with his number for this procedure and couldn't continue till it was fixed.......so  here we wait another 20 min for them to "make phone calls" to get it fixed. Once that was finally adjusted the anesthesiology came in and talked to us....meanwhile Rylan is doing really good for not having anything to eat or drink.  Well he came in and went over everything and then tells us he ordered a breathing treatment as a precaution For rylan. ok.....
   Rylan gets his breather and is PISSED.  in comes Dr. O'Conner who gives us our info and lets us know how the surgery will be planned out and how long.......Then we say goodbye to Rylan and go wait....

Steven, my mom and I all find seats in the empty waiting room and sit. We crack jokes.....play a cheap game of trivial pursuit...and wait........as 2 hours creeps up I start getting really ansy........and when I start to get REALLY nervous.....out walks Dr. O'Connor.
   Well she tells us how good the surgery went...and gave all the details we needed. One of the things we learned was Rylan WAS indeed refluxing which he NEVER showed any signs but his esophagus was short and showed some damage.  And now we wait to get taken back to recovery.  After an hour I cant take it anymore and go ask about him....they decide to let us go back.
    Of course Rylan is still waking up but the recovery nurse was nice enough to let me get beside him....and ask if we wanna see his belly.  Of course we did!

Rylans new scars

and yes they looked painful.........I worked on getting Rylan to open his eyes and they took us to his room....into the ICU we go!

Once we were settled the doctors came in to give us the game plan......my only complaint was his pain killer......morphine. I know alot of you are thinking "he just had surgery why cant he have it?".  Well here is why......Rylan takes an unusually long time to wake up out of anesthesia which in turn affects his breathing.......when you add a narcotic in the mix we have trouble......his oxygen will slip into the lower 80s and they will put him on oxygen which will add more time in the hospital and increases Rylans chances of staying on it due to the fact he breaths real shallow and slow.

Lunch time!

The first day consisted of Rylan resting....the next day they wanted to go ahead and try him on his new food. We waited patiently to see if he would handle it ok....he seemed to do good....then 4 hours later they upped his amount 10ccs.....meanwhile lowering his IV.  Then by 400am the next morning he was off IV! Well Steven and I needed to start learning how to use the IV....We had a couple mistakes......mine was the awesome..spilling of the formula when the tube and syringe disconnect.....but Stevens was the best yet......I cant remember what happened exactly......but he was burping the tube and somehow managed to get stomach bile all over our nurse.(gross I know) But she was such a good sport! After awhile we ended up getting it down like pros

When Rylan started acting better we needed to focus on his breathing...his O2 stats were all over the place dipping way lower then we would like. So we got permission to walk around the hospital.....they said the more we got him up and moving around the quicker his lungs would open and move air....

silly guys

The walking seemed to work great.....he was doing great and was deep suctioned a handful of times.....then i had to demand a breather to get him up where he is supposed to be..and he was doing AWESOME! Our next step in going home was our training......we had to read a lovely yet very helpful book....and a video on how to care for the tube. Then we had our hands on training with a doll on what to do if the tube falls out and how to fix it to be ok to get to the hospital. when we completed that we were free to go!

Our nurse at the hospital gave us a TON of supplies....when we got home we went ahead and put everything away...then it was time to feed Rylan again....well when you feed a child a bolus feeding you use what is basically a HUGE syringe

bolus feeding

Well NOBODY told us there was a cap on the bottom so as we are trying to feed nothing is going down and we are thinking its cracked......so we both get frustrated and Steven grabs a new syringe and discovers the tip cover......yeah we felt pretty dumb.

All in all after this surgery we have noticed so many changes in Rylan...not only does his stomach no longer bulge out.....but he has been VERY happy! We LOVE it!  The only problem is now im forgetting to do things because I based everything around his previous eating schedule!