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. :)