Hear ye, Hear ye.....

Tyler's wish has been granted!  On Saturday, we leave to head down to Florida.  We plan on stopping on the way down to see my grandparents and spend the night with cousins.  We are scheduled to check in Monday at a wonderful resort called Give Kids the World.  If you want to know more about this magical place, click here.  We will spend 7 days there!  Tyler's make a wish trip includes 3 days at Disney, 2 days at universal, and a day at Seaworld.  There are also other tickets we can get, such as Legoland.  Make a Wish Georgia also arranged for Tyler to attend Mickey's Christmas party!  We can't wait!

So many people have worked to make this wish come together for Ty!  Aaron and I are both blessed to work for employers who are allowing us to do this, even after having to take a month off for Tyler's medical needs earlier this year.  The kids schools are working with our children missing a week of school.  Make a Wish Georgia planned everything-even wheelchair rental! The Amazing Miller's are watching our house and the Fabulous Donna is taking care of our dogs.  Thanks everyone!

We may post some pics on Facebook, but mostly we will be enjoying time as a family.  We will be celebrating Tyler and his superman-style awesomeness!  We will watch Joey and Logan be kids without the added stress placed upon them this year.  As for Aaron and I, it will be good to get away from everything for a few moments.

Tyler update, make a wish, and more!

"Tyler is doing well today!"

That has become my standard answer when I am asked how he is doing.  He is.  He is sleeping better and the seizures seem to be under control.  He started high school and seems to enjoy it.  He has enjoyed his summer.  He is back to tormenting his little bothers- oops, I mean brothers.

Tyler has come out of his surgery, which seems to be successful, with flying colors.  If it wasn't for a follow-up visit, we would be carefree and worry free.

It has taken me a while to write this post because I am doing well at suppressing things I don't want to deal with.  At a follow up x-ray, the doctor saw an abnormality in Tyler's abdomen.  We were sent to a specialist and here are the results.

*  Tyler's abdominal organs are rising into his chest and adhering to his heart and lungs.

*  They have done this before and the surgery to correct it almost killed him.

* The specialist recommends we not put him through the surgery again as his chance of surviving the surgery is slim.

What does this mean for our family?

Basically, we are grateful and cherish the time we have with Tyler.  The doctors say it is hard to estimate future life expectancy.  He could go into a crisis tomorrow or he could live this way for 20 years.

I could climb back into the blanket fort I spent the first few months of the year in or I can choose to live.  The bottom line is no one is guaranteed tomorrow.  There were times I didn't think Tyler would live to see the age of 5.  Next month, he turns 16.  Tyler is the kiddo that made me a mom.  He is amazing.  Autism and Down Syndrome are just one part of him.   It doesn't define who he is.  Tyler is a fighter.  Chances are he will outlive me.  So, we choose to celebrate.  We celebrate who he is and his place in our family.  (Honestly, I try not to dwell on the future too much.  I could break down completely but I choose to suppress.)

We were referred to make a wish.  Tyler has been granted a wish and we are currently waiting to hear about details.

SOOOO... That is our reality.  We try to update people but we missed a few this go round.  Sorry!  :)  Consider this our update.

On another note,  Tyler is participating in FOCUS Climb for kids.  If you would like to make a donation in his honor and help him reach his goal, visit his page here....

http://www.focusclimbsforkids.myevent.com/participant/215002

A Study of the Effects of Prolonged Hospitalization of Offspring on the Mental Health of Parents.

Days 1-5

• Everyone is so nice and helpful.
• Netflix is a delightful boredom buster.
• All of the elevators have cute names, such as Flower or Butterfly Elevators.
• Tyler enjoys TeenNick.  How delightfully age appropriate of him!
• They have a delightful food service system allowing you to personalize your child's menu and order it when your child is ready to eat.
•  The hospital library stocks a variety of movie to check out.
• My crossword puzzle book proves I am still smart.
• My husband was really smart to bring some extra charger cords for our devices.
• These rooms are painted such a calming color.

Days 5-10

• This hospital must have great benefits and pay their employees well, because everyone is so nice and helpful.
• Wow!  I have time to watch some of the original Netflix shows I’ve heard about.  I really enjoyed the comedy series I just finished.  Everyone is talking about Orange is the New Black.  Perhaps I should give that a try.
• I just have to remember to take the flower elevators down one floor and walk two halls to take the parking elevators to the Mint P2 deck to find the car.  Shouldn’t be a problem.
•  Teen Nick again?  Okay………
•  It is getting close to lunch so I better decide what Tyler will eat and call the Food service number to get his food before it is too late.  Then, I should call the nurse for pain meds so they will work so he can eat with his mouth all sutured.
• We are checking out the Spongebob movie again?  Don’t you want to try something else? No? 
•  I thought I’d be finished with more of the crossword book by now.  Three is still smart, right?
• It sure was lucky Aaron brought the extra phone charger since mine broke!  I wonder what this other cord goes to?
•  I wonder why the clock doesn’t match the colors of the room.  It also might be slightly tilted.  Hmmm….

Days 10-15

•  Everyone is so nice and helpful it makes it even more noticeable when I snap at them.  For the tenth time in the last 15 minutes, “No! I do not need anything right now!”
• Thanks to Netflix’s original programming I know how to make a shiv.  Also- I have begun to ask what she expects me to trade it for when she brings my son his drugs. 
•  If Butterflies like flowers, why is this elevator system so difficult?  Mint is green.  Just say green.
• Do any of these kids on Teen Nick have actual parents?
• It is 3 pm and I have forgotten to order him lunch. Just bring him anything on a tray.  Anything!  Why am I planning his meals?  Were there budget cuts?
• Die Spongebob.
• Oh my goodness, a crossword book!  I wonder who left this here!
• Are these cords breeding?  Why are they everywhere?
•  “Nurse, Something happened to your clock.  I think it fell.”

The Blankets at this Fort are Heated!

This just in from Tyler Watch 2015:   

Tyler is doing fine.  He came through the surgery with flying colors.  They have been keeping him in a induced coma since Monday.  We had a slight scare on Monday night because his blood pressure dropped.  I mean dropped to 47/11.  We could not get it to raise up for a few hours.  They were going to try to take him off the vent on Friday, but on Thursday night we again had some BP and oxygen problems.  This weekend, we have been chilling!  The plan is to try to take him off the ventilator tomorrow so fingers crossed!

EVERYONE here at Scottish Rite has been wonderful.  Our nurses rock here in the PICU!

The Blanket Fort has Collapsed... Good bye Blanket Fort......

Good Grief!  Today, I got pulled over by the cops.  I was trying to avoid the parking lot on 285 on my commute to work and ran a stop sign.  A couple of policemen on motorcycles pulled me over.  I was sure I was getting a ticket, a huge fine, and attitude.  I say that because when the police officer came up to the van, he seemed rude and cut off every sentence I tried to say. He mentioned my cell  phone was on so I was obviously surfing on my phone as I was driving.  He took my lisence and spent around 15 minutes running the tag.  During that 15 minutes, I was pissed. A ticket? Really? After everything else put on us this month, now I was going to have to pay a fine?  What else?!!  I was just trying to get to work so I could make sure everything was as done as possible for when I take an indefinant leave of absence. A fine?  More money out of our pockets?  Really?  Wasn't it enough we were going to be financing basically 2 households during the coming months since our family would be split into two parts?  I think I was more angry I had no time to explain I didn't know this area or see the sign.  (Not an excuse, but still!)  He wouldn't let me explain my cell phone was only on because I was using google maps to get to work.  I had the voice command going into the speakers on my van so I wasn't even looking at me cell.  Really?!!!!!

Surprisingly, I received a warning.  Later, when I was complaining to my Aaron that I couldn't seem to catch a break, he stared at me and informed me a warning was a break.  God bless my infuriatingly rational husband.

Sigh.

Ty's surgery has been scheduled for Monday morning at 9:45 am at Scottish Rite. Last time, we created a medical page through the hospital to give updates to family and friends.  We aren't doing that this time.  I will be updating our family blog.  There is a way for family and friends to sign up to get updates on this site.  That said, I will be taking a break from Facebook.

Frankly, I am bitchy.  I'm sorry.  That is the word that best describes me at the moment.  (Ask Aaron.  He better not agree.)    My emotions are all over the place right now.  I go from laughing to crying to being angry within a matter of moments.  Tonight, we ate tacos and I thought, "What if this is the last time Tyler eats tacos?!!" I am taking these feelings out on Aaron.  He is being so strong, but why should he have to deal with everything PLUS a crazy wife? :)

I feel isolated.  I read facebook and feel even more isolated.  When I see friends post about how they ran out of ketchup, I think, "Really?  It must be so hard to be out of KETCHUP right now!!" So I am out, people!  I love you and I promise to be a much better friend after this ordeal is over.  I am raw and I am broken.

Right now is rough.  I am so thankful for family and friends.  While I have felt isolated, angry, and lost lately, I have also felt love.  So many of you have sent us good wishes and encouraging messages.  I have received support and offers of help.  I love you all.

Deeper into the Fort.......an additional update on Ty

I just wanted to give you an update regarding Tyler's doctor's appointment today,  We have no good news.  Tyler's oxygen level is dropping.  More than we thought.  At night, it is so bad the doctor said,"If he were a full grown man in the hospital, they would be beginning CPR at that point."  It has already begun to cause him to have seizures.  So here are our choices.

#1 - Surgery.  Major surgery.  They will expand his nasal passages, expand his jaw, and reduce and reshape his tongue.  Afterward, he will be in a medically induced coma on a ventilator for 7- 10 days. Tyler has had issues with sedation and things in the past.  We have been told he could have a trache when he is released.

#2- We don't have the surgery.  He will slowly suffocate.  His heart will be suffer severe damage.  His organs will shut down.  He probably won't reach adulthood.


Going in to the doctor's, I was against having the surgery.  Aaron and I left the office speaking in half sentences.  How do you deny your child the chance to live?  It is going to be tough- emotionally, financially and, for Tyler, physically.  We have decided to have the surgery.

The scheduling process is underway.  We should have a date soon.  For now, my husband is married to a crazy woman.  I am emotional, scared, and angry.  I am angry my baby will once again have to fight.  I am angry we are being forced AGAIN to make decisions no parent should have to.  I am tired of getting a glimpse of calmness only to have it squashed.  Yep, tonight I am angry.  No child should have to deal with this and no parent should have to watch.

So now...I am taking a break from facebook.  I am probably putting my phone on silent.  I am going to hide in my blanket fort, drink wine, and eat chocolate.  I am going to go to church on Sunday and try to find grace because right now I am having trouble understanding God's plan.  

A List and a Blanket Fort (An Update on Tyler)

About a month ago, I spoke to Tyler’s pediatrician about issues Tyler was having sleeping.  He sleeps very little, never soundly, and snores whenever he is asleep.  Honestly, I thought we were probably going to have to have his tonsils out.  We had been told when he was younger he may have to have this done.  So, I wasn’t surprised when we were referred to CHOA’s (Children’s Healthcare of Atlanta) Sleep Center to have a sleep study done.  We scheduled the appointment without much concern.  I made a list of things we needed to do in preparation. 

Then, I noticed something.  One night at dinner, Tyler did something.  It was just a facial expression.  Looking at him, I thought of a friend I have grown up with.  She has epilepsy and has Petit Mal seizures.  Something in the way his eyes and face looked reminded me of her.  The only difference was his body stiffened up at the same time.  Another trip to the pediatrician and we had a brand new referral- this time to a Neurologist.  More items were added to my to do list.

Our sleep study was scheduled before the Neurologist.  Tyler and I spent a Monday night at Scottish Rite’s Sleep Lab.  He tried to sleep and I tried to keep him from pulling off the cords that were measuring all the things the Doctors needed to look at.  The next morning, our nurse came to disconnect him and casually asked me who his neurologist was.  Apparently, she was seeing some seizure activity on his scans.  Of course, when I asked and she realized we did not have an actual diagnosis, she refused to give me much more information.  All she would say was our doctor should get his report in about 7 days. 

The next day, we got a call from Tyler’s doctor.  It is never good when you get results back quickly. His oxygen is dropping at night.  Oxygen was delivered to our home that night.  Of course, my very strong 15 year old does not want to wear it.  It doesn’t stay on long enough to do him any good.  After discussing this with his doctor, we quickly made his ENT appointment.  There, we planned to discuss having the tonsils and adenoids out to eliminate his sleep apnea. 

Our Neurologist visit was scheduled before the ENT visit.  That visit gave Tyler a new diagnosis.  Tyler is indeed having seizures, probably triggered by the drop in Oxygen and lack of sleep at night.  My brain was on overload by this point.  Even more things were added to my growing list.  However, despite random crying spells and dealing with mom guilt where you blame yourself for not discovering this sooner, I was dealing with everything.  I had a list, I had a plan, I had carefully laid out steps to potentially correct all of these issues.

Because we knew we were probably going to discuss surgery for the enlarged tonsils, Aaron took off work and came with us to the ENT appointment.  Thank God!  I was completely floored when the ENT doctor told us his tonsils look great!  There is no need to have them out.  The problem is his tongue. Basically, it is too large for his mouth and is obstructing his airway.  There is a surgery to correct this.  However, it is a more involved process where they reduce and reshape the tongue.  It carries more risk, more hospital time, and a longer recovery.  Well, that was not in my plan, I don’t know which steps are coming next, and I have no idea what to even put on my list.  So I went home.  I crawled in bed. I pulled the covers up over my head and informed Aaron, after he found me, I lived there now. 

Apparently, the ENT Doctor’s visit was the point when Aaron and I stopped communicating to other people.  Not just friends, but parents, sisters, ect.  We have been fussed at by several people this past weekend alone for not telling them what we are now facing.  Honestly, we did not knowingly do this.  After we realized Tyler’s own grandparents were unaware of this unexpected turn of events, we have tried to go through our list and give everyone updates. 

We meet with the head of the cranial facial department on Friday.  I have intentionally refrained from doing any research on what we are facing. Today, after talking to someone who’s child had to have the same surgery, I broke down and did an internet search on it.  I stopped reading after the words medically induced coma and trache.  I may move back into my blanket fort after the appointment.  I put clean sheets and extra pillows on the bed, just in case.  Hopefully, we can get some answers and a better understanding of what our options are………so I can make a list. :)