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!

Hospital Stay #1 in 2011

Yesterday started off like any other day. Got Rylan up...got him ready for school and put him on the bus. He was laughing and giggling. Basically acting like my normal kid. When he got home around 2:20 His nurse and I went to get him off the school  bus......however he did not appear to be normal.
  
 When rylan got off the school bus he was very pale in color....was asleep.......and he had bluish looking lips and dark circles around his eyes......when we get inside we get him out of his wheelchair. Jennifer tries to wake him and and his having alot of difficulty....it seemed like Rylan was post seizure......when we finally get him to wake up he gets a little color back but is struggling to breath, he is taking shallow short breaths and is very lethargic.  Jennifer then checks his oxygen which is at 84%.........his respitory rate was in the 30s. we werent liking the oxygen.....and being he was fine just that morning.......she checks the pulseox on herself.......well it was working.......so we decide to go ahead and put some O2 on Rylan we started off with a liter and got nothing so we bumped it up to a liter and a half  and got him in the high 80s and lower 90s....i was getting ready to load him in the truck to take him to the hospital....but then he starts acting in pain and breathing faster....so I called 9-1-1.

When the ambulance arrived they rushed in and began to take care of him........they brought the gurney and loaded him up.......off we go.....

As we are on our way to the hospital the paramedic managed to get a line in him......when we arrive we head straight in a room....they change him over and put him on alot of o2 but his stats keep dropping. So the nurse yells for help as they get ready to intubate him.....not to sure what happened but he started going up.....so then we do chest xray,bloodwork the works.....and are told his lungs look like a virus but he could have aspirated......they need to see how he does. then we are told we are going to be going to the ICU (no surprise there). We get into our room and they decide they are going to be putting him on non-stop albuterol with oxygen. and he will get the CPTs every hour.   Well Steven and I are super tired at this time so we pass out.......

that leads us to this morning...........lets see what they day brings....he seemed to ok over night, but this is rylan we are talking about

Cerebral Palsy Facts

Here are a few facts regarding CP, it would be nice to know more people were aware.

rylan with his sister.......but as you can see rylans wrist are contracted and he cannot straighten his right leg

Cerebral Palsy is a condition that affects movement,muscle, tone, moter skills and development.

It affects 1 in 278 people

Despite advancements in medicine the incidence of cerebral palsy continues to rise

1 in 4 children with it can not dress or feed themselves

1 in 3 children with CP cannot walk

1 in 4 children with cerebral palsy have epileptic seizures

there is no cure

Cerebral palsy is the second most common neurological impairment in childhood.

 Spasticity of one or more limbs is the most common disability now associated with new cases of cerebral palsy

Of congenital disorders, CP has the highest life-term costs per new case, averaging $503,000 in 1992 dollars (approx. $650,000 in 2003 dollars).   84.5%  of children with cerebral palsy receive physical therapy 6 times a month, 50% receive occupational therapy about 5 times a month and 37% see a speech therapist about 5 times a month.

xoxoxo

We need research, funding and national surveillance for CP

Swallow Study fun

Ever since Rylan had his tonsils and his adenoids removed we began to notice a new habit Rylan has begun. Have you ever tried to talk to some body that seems to have something in the back of their throat and then they clear it? Well this seemed to be a non-stop thing for Rylan.....and we were concerned his chances of aspirating were getting pretty high.So his wonderful pulmonologist got us in for a swallow study.
So off to TMC we go.....

waiting ever so patiently

We head over to radiology and they check us in....we wait in the waiting room and they call us back......to wait in yet another waiting room

watching Barney....he was not amused

Finally the speech therapist arrives and get a brief history on whats been going on.....the nice thing was she has been there for the other swallow studies with Rylan so she had a very accurate outlook and what to do.....they get the room ready and off we go

getting set up in his "special chair"

The funny thing about this entire test was Rylan was in love with the therapist he was flirty and very excited.....

So when the test had begun we became very relived the there was no aspiration....due to the fact Rylans soft pallet does not come down he relys a lot on gravity to do the work for him. therefore the junky sound is the liquid hanging out in his throat.......we were taught different ways to position his head so that this problem may eventually go away.

Well with fingers crossed we will hope that his swallowing will stay decent.......and the feeding tube is still light years away

We refer to it as "Pain and Tourture"

As a parent there are always the little inconveniences that like to get to us......Such as making sure homeworks done, diapers are clean, all food is eaten...etc etc. In my case was having to go up to Tucson 2 days in a row for appts. It may sound like im complaining about something so little....but when your counting in a 40 min drive both ways and a time constraint of medication, lunch, and Steven having to go to work it gets a little crazy.  Yesterday we had to go see Dr. Talwar

Dr. Talwar

Dr. Talwar has been seeing Rylan all his life. He is one of the BEST neurologists ever! Rylan's check up went great and Rylan's making progress great! My big thanks to Dr. Talwar (and I should knock on wood) is Rylan has been seizure free for almost 2 yrs!

Today was a fun day though. When we got to the childrens clinic this morning the first thing we had to do is get Rylan's blood drawn. That was a task. Because Rylan is sooo contracted on top he has to have blood drawn from his feet. After it took some time to find a good vein everything was going well till Rylan ripped the needle out....so they moved to the other foot. So after 15 mins Rylan walks out with 3 holes in his feet....and unfortunately has to endure Physical Therapy.

Rylan has a PT appt. every other week. Which is one of the necessities that can be a pain sometimes........but its worth it.

not a flattering photo but he was wore out from the blood work

Rylan's PT is Danyle she has been Rylans Physical therapist for most of his life.......So she took us back to the room where we were gonna try something new today. She Started Rylan out with stretching 

Danyle and Rylan stretching

Yeah....it sucks to be Rylan lol

So the new thing Danyle wanted to try was the treadmill....Rylan was buckled in a harness and Danyle walked his legs to not only stretch but build the sensation his muscles miss from not walking.

ready to go

he having a blast! cant you tell????

Use those LEGS!!!!

After we did about 5 mins of the treadmill Rylan got to ride the tricyle! this is the coolest thing ever......and something about it makes him push the pedals on his own and he loves it!

Dad and Danyle getting him in

a little slow

now he is happy!

He went for a cruise around the clinic....its no big deal

When all was over Rylan looked like he was gonna pass out! Thats just another day in the life of us!

The Power of the male role model

Its been awhile since I have posted anything but Rylan has displayed actions the last couple of nights that has got me thinking.
      Besides my dad. Steven has been the only male role model Rylan has ever had. Rylan adores his grandpa and his dad. Well this last weekend something happened that was a first.....Rylan wanted nothing to do with me.......NOTHING! My little mommas boy was no more. Anytime I got near him he cried. All He wanted was dad. Not going to lie it crushed me alittle. But the Influence Steven has on Rylan is amazing.
      When Rylan is doing something he knows he is not supposed to, he has learned he WILL get in trouble. As soon as "dad" gets near he stiffens and gets scared. This may sound like nothing but the communication they share warms my heart.            
          Steven has gotten Rylan to blink his eyes in acknowledgement of what he wants when given options and has gotten frequent eye contact with making choices. He does nothing but smile and listens to dad.
        This is a BIG deal.  Finally making progress with communicating with Rylan is such a relief.  after spending they first 5 yrs of his life trying and failing.......I feel I owe my whole world to Steven. Especially stepping up and being the dad Rylan always needed. On top of giving him the attention he needs to help him succeed.

                                            going for a buggy ride