Confession

I am scared. I am excited. I am about any emotion that you could possibly feel.

I am so beyond excited that Bryce will be given a whole new opportunity and I know that this WILL change his future. Bryce has always been so determined and does so great with therapy but his spasticity always stood in his way. I KNOW that this will open so many doors for him.

I am scared because it is a major surgery. In Bryce's life he has had 13 surgeries: 11 shunt related surgeries, bilateral hernia repair and eye surgery on both eyes. For each and everyone of these, some planned some emergency, I cried. There is just something about walking your child to those OR doors - walking away without them- and putting full trust into the hands of the surgeons and OR staff. Sitting in surgery waiting is also something I am very familiar with. I have gained a lot of patience over the years, but there is nothing worse than waiting in that room. You sit and wait for the updates, most times it feels like forever before you hear anything.

I will never forget his first shunt surgery - we were called to the consultation room where the neurosurgeon said everything went well and they were "cleaning him up" and we would see him in recovery. So we went back out to the waiting room and waited and waited.... Finally we were called back to the consultation room again. The surgeon explained that while they were removing the sterile dressing (which is sticky like tape) it ripped through Bryce's skin. It was terrible - I wasn't prepared for what I saw. Bryce literally had layers of skin ripped from his head, exposing his shunt and within a week would become infected. It was like a domino effect. That one surgery led to 10 more....

So now we wait for #14. One thing that I do know for a fact is -- if anyone can do this BRYCE CAN!
We Fight For Him - He Fights For Us!

Happy 4th Birthday Cohen and Bryce!

Today the boys have wrapped up their first year of Preschool. It has been a great experience and they absolutely loved it. I remember sending them off that first day - it was so hard to let both of them go (without us) and to trust complete strangers. Since that first day the school staff - from teacher to nurse to therapists - have been great to our family. They called with any concern - no matter how small. They kept a communication log for Bryce and sent it home with him each day. We loved hearing about new friends that Bryce was making and what he did that day. It was easy for Cohen to come home and tell us what they did but Bryce wasn't able to do that. The communication log was our way of talking to Bryce about what happened. I will never forget one of the notes from early on...

"Bryce has made a new friend and her name is Abigail."

When we asked Bryce about Abigail his face just lit up. It was the best note for the entire year.

Tomorrow these two little miracles will turn 4 years old. I will never forget the day they were born. It was a day that was scary, exciting, sad and happy. To see how far all of us have come since then is pretty amazing. Cohen and Bryce are both doing so much better than anyone ever predicted. It is hard to believe that Cohen was just a little 2 pound baby - there is absolutely no sign of prematurity in him now.

We were told Bryce would never do anything - he would never breathe or eat on his own. We refused to believe that - it was the only way we could get through that time. I am more than happy to say that he can eat and breathe on his own... Sure there are many things that he cannot do - but what he can do - what he has done- far outweighs what he doesn't do.

I am forever thankful that I have these two boys.

They have forever changed our lives and have made us better people in the process.

Happy Birthday Cohen and Bryce!

- Mommy and Daddy (and a host of others) love you so much!

Brothers

There was a time when the boys were babies that I worried they wouldn't share that "special twin bond" because of their differences. Cohen was growing and exploring but seemed to not pay much attention to Bryce. Bryce on the other hand has ALWAYS studied Cohen watching his every move. He has always truly idolized him. As the boys got older, Cohen started having more of a love/hate (hate might be a little strong but you get the idea) relationship with Bryce. One minute he would be giving him hugs and the other minute slapping him. You could see Cohen struggling with feeling like Bryce got more attention than what he was getting. Even though Cohen got plenty of attention; in his 3 year old mind it must have appeared he didn't. About a month ago Cohen started asking questions...

Why can't Bryce talk? Why won't Bryce get up and dance with me?

The questions caught me off guard and I have to admit that I really didn't know what to say at first. Each time (after a long awkward pause while I am figuring out how to approach the conversation) I tried to explain to him why Bryce couldn't do some of these things. Truth is - I fumbled more than I should and Cohen could probably tell. He quickly changed the subject each time. He even laughed off that Bryce couldn't talk by saying "He is kind of like Tax - he doesn't have a voice."
-Side note - Tax is our Dog.

The last few weeks Cohen has really been changing with Bryce. For a while now Cohen has called him "Brycie" which I love. He wants Brycie to do this or Brycie to do that... always wanting him to do whatever he is doing. It is even going as far as Cohen wanting to wear the same clothes or similar clothes as Bryce. Cohen often tells us what Brycie said or what Brycie did.... He even magically knows when "Brycie wants some cookies." Imagine that :o)

Last night Matt mowed the yard and let Bryce ride with him. Cohen threw a fit until Bryce was off the mower and next to him. We had thought Cohen was throwing the fit because he didn't go first but it wasn't that at all. He wanted Brycie with him. Whenever Bryce goes to appointments or to his "other school" Cohen always says he is going to miss Brycie. I can see more than ever that "twin bond" or "brotherly bond" really forming into something strong. They seem to be able to communicate on another level. I couldn't be happier seeing this.

Cohen is starting to realize that he needs Bryce just as much as Bryce needs him.

Aren't they just the best looking two you have ever seen?

One Battle Over

Once we had decided that Bryce's best opportunity would be to have the surgery in St. Louis with Dr. Park, we knew it would be a battle with insurance. Let's just say that it was countless hours of battling with our insurance company . I wrote numerous letters of appeal, received numerous denials and made daily phone calls to the insurance company. I have had battles with insurance before but nothing (and I do mean NOTHING) like this. It was hard, it was exhausting and it was a HUGE weight on my shoulders. I even went as far as contacting my employer to reach out to my insurance company (which they actually did but in the end it didn't help). I contacted the Department of Insurance for help as well. Matt and I even applied for a medical loan as a last resort - we were desperate to get this done.

How was it possible that Bryce have two insurance coverages but NO ONE would cover? Finally I talked to the right person and learned that I could also appeal through the secondary insurance, Kentucky Medicaid. I had always been told his primary had to cover a portion of cost before the secondary would cover anything. I never had considered appealing through the Kentucky Medicaid based on the primary's denials. I was wrong!

To shorten up what took months to achieve - Bryce's secondary coverage has agreed to cover the surgery. They have already reviewed and APPROVED the Prior Authorization. The lady telling me this on the phone could never understand the news she was delivering. I, of course, asked for it in writing but....
IT IS COVERED... IN ST. LOUIS... with the AMAZING DR. PARK!!!!!!!

Bryce is scheduled for surgery on Tuesday, July 9th.

We will travel to St. Louis on Sunday, July 7th. Bryce will have his appointment on Monday, July 8th with Dr. Park and his team. After surgery he will spend 5 days inpatient before being released to go home. My mom and mother-in-law will go with us. They will help entertain Cohen - of course Cohen has to go. He and Bryce are so close and Bryce does best with Cohen around.

Miracles Can Happen!
Sometimes they don't happen on their own but they do happen with a little help.

This is by far the best Mother's Day Gift I could have gotten!

Waking up and then begins the nightmare

December 15, 2012

I woke up at 6AM for what would seem to be no reason. I didn't hear anything - I just had a very nervous feeling come over me. So I stayed in bed, wide awake. About 20 minutes later I heard a strange noise coming over the baby monitor that we still used in the boys' room. I sat up in bed so that I could hear a little more clear. After another few minutes I heard another noise that sounded like one of the boys may be vomiting. I got up and went in their room - still completely dark I went to check Bryce first. I felt around his face and did feel a wet area. I went to clean it up and wondering if he might be laying in some of the vomit, I went to turn him (from him belly) so that I could feel underneath of him. When I moved him, it was like moving a rock. His position didn't change, he was like turning over a rock. I quickly flipped on the light and could clearly see that he was seizing. His eyes were up and to the right, his chin was making a rhythmic movement and he had a slight twitch in his hand. He wasn't responding to me in any way. I quickly moved him to the living room (by this time Cohen had woke up and was following behind). <> Knowing that we needed to go to the hospital, I quickly dialed my mother-in-law thinking she lives closest. I would find out later that I only let the phone ring one time and then hung up. I then quickly dialed my parents - my dad answered... "Just get here, both of you and fast."

I called 911. During the call the dispatcher had someone call my mother-in-law so that we could have people in route to my home. I needed someone else to get there so that I could go with Bryce. Poor Cohen was oblivious to what was happening and I was trying to keep my cool in front of him. I can't say that I did a very good job of this. The ambulance arrived and the paramedics let me walk Bryce out to the ambulance. Right when they were about to leave, my parents and mother-in-law came flying into my driveway. I must have told them a little bit of what was happening, then shouted demands.... Someone would need to stay with Cohen but someone would need to come be with me and bring me some things from home. These Grandparents came in the early morning hours not knowing what they were pulling in to find. Amazing Grandparents they are (actually amazing just doesn't cut it - but that is for another post.)

We arrived at the hospital and there must have been 20 people or more working on Bryce. All I could do was stand back and watch. Bryce's condition hadn't change at all and I knew by that time it had been well over an hour. I kept thinking - this has to be his shunts - this has to be a shunt malfunction. The Chaplain was there to stand by me - which bothered me even more... I kept thinking why were they sending the chaplain in? After what felt like an eternity but I know that it wasn't - my parents were there. We stood back and watched. On occasion they had me go and be next to him. I honestly don't know how I stood on both feet. Finally the doc in charge (she at least seemed to be the one in charge) came to me and said we are going to need to intubate him. I was crushed - why was this happening?!?! She could see it in my face - please no. She told me that I had 5 minutes - I needed to do anything possible to get him to come around. They needed him to start responding. His CO2 level was 94%.

I quickly told my dad that it was time to call Matt- Poor Matt all the way in Idaho was about to get the worse phone call ever and was hours away from us. Why was this happening? I was by Bryce and I know that I was pleading with him. I had that desperate conversation that no one should ever have to have pleading him to stay with me. It didn't take much longer for him to bring up his little arm and start hitting at the "bag" the nurse was using to keep him breathing. He was fighting - of course he was fighting - he always has!

After various medications and tests, things slowed down. The shunts were stable so that was good news but left us with many more questions. Matt was trying to make it home but (on Saturdays) there are only two flights out of Idaho so he wouldn't make it back until late that evening. Bryce was admitted to the PICU and we stayed over night. No one knowing what really happened, other than he had a seizure that lasted at least three hours (counting from when I found him anyway). He was started on an anti-seizure medication and we went home. I pushed to have a Sleep Study done since he had done this in his sleep - similar to the September 2011 incident that occurred in his sleep. See post Trauma South Carolina if you weren't aware of that one.

We did have a 24 hour EEG with sleep study done in February. The results came in as follows: Bryce slept 3.5 hours (the picture should show why) and stopped breathing 7 different times. On average he would stop breathing for 23 seconds and his oxygen saturation would be around 77% (normal is 99 to 100). There it was - the answer to what happened. So most of the time Bryce is able to take that big breath but obviously there have been two times where his brain did not tell his body to breath.... This isn't sleep apnea but instead centralized apneic events. We have our answer so now what do we do?

Bryce will have another Sleep Study done tomorrow, May 2nd but this time with oxygen titration. They will have him on a low setting of oxygen and slowly turn it up until he stops having these pauses in breathing. Most people know that I could count on one hand the number of nights that I don't get up at least 3 times or more. Even on a good night I still get up at least once or twice. As you can imagine though, knowing that he needs oxygen but waiting for the second study and results to give him that necessary oxygen has made it even harder to get sleep. I am hoping once we get this all straightened out that we all start sleeping a little better, and for Bryce, a little safer.

Wish us luck - We hate overnight stays at Children's, but at least this one is planned.

This child does absolutely EVERYTHING with a smile! We can all learn something from him.