Surgery :(

The morning of the surgery was a normal check-in. I wasn't prepared for when the time came to hand over my child to a complete stranger. They don't allow parents in the room as they are putting their child to sleep for surgery. I didn't realize what it would feel like to say "I love you and will see you in a little while", when I actually was feeling as if, "what if he doesn't wake-up?"
Drake had two procedures one of course was the "feeding tube" (G-Tube) the other was called a Nissen Fundiplication. With in about 45 minutes of waiting, the anesthesiologist came out to inform us that Drake needed a fiberoptic intubation. Apparently his passageways are too narrow for a "regular" tube in his throat while being sedated.I'm not sure if this was a foreshadow of what was to come or just Drake being a little more interesting!!!
We were told,"You'll be in the hospital for a couple days for recovery." Drake had other plans! The first day, he couldn't swallow well. We were told, "This was typical", but once again it's hard to watch your child struggle to do a task as simple as breathing and swallowing. The nurses at the hospital were GREAT! We had a suction tube brought in to help keep his extra secretions from cutting off his airways. We held him all night worried he couldn't lie flat or even at an elevated angle. Worried, in case one of us fell asleep and didn't hear him "choke" or "stop breathing".
It doesn't take long to become exhausted in the hospital (not to mention they don't have Starbucks). I was trying to imagine what in the world Drake thought had happened to him. I was wondering if I had made the right decision to have this feeding tube put in. I was wondering if we were ever going to leave this hospital, period! I knew that we were not going to be heading out the following day since he apparently was even tolerating his feeds through his tube. And even if I wanted to give him a bottle, he couldn't swallow.
Several of my friends and family came by to try and give Shane and myself a break. On the second night Drake's teacher Mrs.L came by to check on our little guy. Once again it was another moment of God's intervention; when the 3 of us were looking over the crib, talking about the days events when all of a sudden...
Drake started turning purple, arching his back and seizing!!! Mrs. L, calm as could be, said he's having a seizure, go get a nurse. I remember looking back at her as she was turning Drake over and all I could do was run out the door and yell for help. In all my years of emergency training, it all goes out the window when it was my child lying there. Shane came running shortly after me yelling for the nurse to come too. I'm not quite sure how long of a time period took place. I do remember thinking this was the end for Drake.
They decided some sort of mucus plug got lodged in his throat. The doctor on call came an hour later or something like that. I was not a big fan of that young man for the rest of our stay at the hospital! Even if this was something he had seen everyday, we were in need of a little compassion. I also felt like it was a little early in his career to be so non-chalant about our son's well being. In other words it seemed like "no biggie" to him.
Once again, the nurses are the ones who made the difference. Drake did come out of the seizure, but still was having trouble breathing and swallowing. The nurses came on a regular basis in and out of the room. His oxygen levels were continually in the 80's. After 3 nights of holding Drake and persistence of the nursing staff they decided to put Drake in the P.I.C.U. (pediatric intensive care unit). He was there for only two days then released back to the recovery floor. My mom was nice enough to get us a hotel room at the hotel next door so we could get a few hours sleep. They wouldn't allow us to stay in the PICU with Drake and we were both physically and emotionally tired.
After 7 days at Brenner's we were going home. I think I left there crying after they showed a video on CPR, "just in case". I didn't want to stay in that hospital room anymore, but I also didn't want to face being at home alone. Needless to say, I was never alone! Between Shane, my mom, my mother-in-law and Mrs. L, we all survived the recovery at home. My mom brought in groceries then my friends and friends from M.O.P.S.(mother of pre-schoolers) brought dinners for a month!!! And yes, food in VERY comforting at a time when you don't want to think about what to fix next. Everyone even brought a little dessert for Grant, the BIG brother :)

My latest video for the 4th Annual DNI !!!

4th Annual Drake Naylor Invitation

My how Time Flies! Is this Good or Bad?

Funny how I look back on this blog and read what I have done. It seems I get so caught up in my life now, that these days of "Baby Drake" seem so far away! It's nice to be in a different place, but it's important to try and finish (from what I can recall) of these days!
I have learned alot about blogging and will try and do better about inserting links.

with that said I will get to the next story that was a definite moment in our lives. I went to take Drake to see the G.I. doc at Brenner Children's Hospital. I remember it was a 4:00 appointment. I remember worrying about the how bad the traffics would be between Winston Salem and home. I remember sitting in the office with the doctor saying, "I hope you don't mind if I feed him while we talk".
Drake, at the time, was still on a special feeding bottle called a Haberman Feeder. He latched on as usual, with the rubbing of his cheeks, to get him stimulated enough to suck. After several minutes of the same ole conversations about little weight gain and "failure to thrive", Drake began to cough. Nothing unusual for us. It generally led into some sort of sputtering and sometime crying. I always figured his feelings were hurt that he couldn't get enough to eat and was too fed up to try again.
Dr.H asked if he did that often. My answer was of course, yes! He sent us over to take a feeding swallow test, which he had had before. The same two nurse/therapists were there. I remember talking about the latest in Scrap booking and Vera Bradley purses. It didn't take a genius to see the change of their expressions when the conversation came to a quick halt. It was nice of them to just stare at the screen and each other while trying not to say much to me. I was by myself, funny how you tell yourself "It's no big deal, what really could it be?"
I went back to the waiting room and the two girls came out to tell me I needed to wait and see the doctor and not to leave without seeing him first. I don't recall how long I sat there, but I hesitated to call Shane. Still thinking, "It's no big deal." After that it became a blur. Dr.H said something about aspirations and feeding tubes!?!?!
Dr.H said he was going to go call the surgeon to come talk with me. At that point, I realized "Now it's a BIG deal!" Time to call Shane, time to call the feeding specialist, time to call the teacher. All of who didn't think he would need such, including myself!!! They all asked the same question, "Why, for what reason?" This is the question I have asked myself since the day I found out about Drake's chromosome abnormality. I started crying. It seemed at this point I couldn't hold it together. There was barley a sole on the entire floor of the hospital. I was the only only one in the waiting room.
The reason Drake was in quick need of the G-Tube, he was aspirating his formula and the doctors were concerned of Drake getting phenomena. No one could argue with that medical reason. Seems we had a time bomb of problems ahead if we didn't take care of this a.s.a.p.
Shane walked in the same time the surgeon did. I remember Dr.P, tall still in his scrubs wearing neon orange Crocks. Both doctors and the two of us sat in the gigantic waiting room, like it was our living room. He was very mild in describing exactly what Drake was needing. I'm sure I was the umpteenth, hysterical parent he had talked to that day. He never hesitated when I asked, "what if I need some time to think about this?" His answer was, "You can have till Monday". Oh yea,did I mention, it was already Thursday?
Needless to say we scheduled the surgery and went home. All this because of a little cough in the doctors office. God's intervention? I think so!!!

4th Annual Drake Naylor Invitational!!!

Wow, I can't believe that it's here already! I'm working on so many things for Drake's school that I've forgotten to post.
The date of the event is Saturday, May 23, 2009. Please go to our exciting NEW web-site www.drakenaylorinvitational.org.
Also visit us at www.shanessportingclays.blogspot.com and find me on FB; @ Trish Lamb Naylor.

Cool Video of our Make*A*Wish Trip!!!

Make*A*Wish Disney Trip 2009

Make*A*Wish

How do you say "Life Altering Experience", with out it sounding corny?!?!?! We were refereed to Make*A*Wish and granted a trip to Disney World a couple months ago!!! First off I have to answer the question, "No", Drake is not terminal. My understanding was the same of the M*A*W. When the wish person called and I answered the phone, that was his first words. "Let me start by saying your child has been refer ed to our program, but is not dying!" Whew I thought, then I chuckled, because I'm sure he has said that on several occasions!
After the process of paper work began and the Christmas holiday was over, we had all the plans made for our trip. Can you imagine going on a family vacation and not having to make one single phone call, ticket plans or even having to decide where to eat? Let me add too, when you travel with a special needs child who has medical needs, there are lots of other considerations that go into play. Make*A*Wish took care of ALL the details. Oh Yea, IT WAS ALL EXPENSES PAID!!!!!!!!!!!!!!!
They arranged for a portable oxygen tank to take on the plane (Only one of it's kind allowed on plains, for the size and type breathing Drake has). They made all the arrangements for his Oxygen concentrator at the room, suction tank, extra batteries for different devices and his special bath chair. They also took care of allowing and paying for our nurse to go!!! She ended up being a very crucial part of our family being able to go and completely enjoy this trip!
M*A*W also arranged for a limo ride to the airport, handy-cap van rental in FL, accommodations (will get to that in a minute), food, tickets to Disney/Sea World and even allowed us a day at Discovery Cove (swim w/ the dolphins).
M*A*W has a hotel all their own called "Give Kids the World". I was worried there would be sick children everywhere, NO WAY!!! They have two restaurants, ice cream parlor (open 14 house a day), Arcade, Basketball courts, Merry-go-round,small child size riding train and remote-control-boat area, Putt Putt, playground, pools, Movie theater, did I mention ICE CREAM PARLOR!?!?!? (Grant only had ice cream twice a day for 6 days in a row! WHY NOT!!!) They also had events planned daily for those who wound up sick or couldn't handle the parks all day. Give Kids the World was an amazing "resort" for M*A*W children and their families. A very special place on earth with a great story of the man who started it all! Please take the time and read about this extraordinary man, Heni Landwirth!!!

Thank God for Technology!!!

Just sitting here trying to give the blog a little update while the boys are glued to the TV. What better time to send a quick update.
I started Drake with a new Neurologist in Greensboro. I liked his ideas
We are currently planning on heading to UNC for a third opinion for Drake's "episodes". poor little guy is still having a difficult time keeping his feeds down. I'm still not convinced it's not the Kepra for the seizures. After vomiting for 4 1/2 months,almost daily, I thought this week was going to be different. He had gone 5 whole days without getting sick then yesterday he made up for lost time. We have been weaning him of the Kepra to see if this will help (and to see if the seizures come back, even though I'm not sure they ever went away!). We also have an appointment with the GI doc to have another looksie :)
Last month I sent a couple videos of Drake's episodes to four doctors I thought might could be of assistance!!! Thank God for Technology and Thank Shane for the new camera with video, for Christmas!!! (Nice surprise from him and the boys!!!) Any who, three docs responded with in 12 hours and the forth on the following day! What does that tell me? Is this more serious than hey thought? Is there finally a doctors that sees what we see? Is there something that can be done? What ever it is, I have people who are now responding!

Drake's original Neurologist, who moved to OH, called one night to talk for an hour. He spent his own time to answer questions and concerns for our sake. He is the same doctor who gave us the incite about the "Joy" . He feels these are seizures as well and that if UNC doesn't help, we should try John's Hopkins in Baltimore.

We originally had an appointment with UNC in May. Our GSO Neurologist was kind enough to call and get us an appointment for late March.

Here is footage of what I sent the doctors;

Drake Naylor's Episode


Drake Head Drops Scene 2

Drake episode 3