Hi beloved friends and family! I will spare you my sad attempts to justify my blog absence and get right to the point.
WE ARE IN OHIO!!!!! Yes, yes, yes it’s true! We are literally in snowy Columbus, Ohio!
In the Ronald McDonald House across the street from Nationwide Children’s Hospital right now! We could not be more grateful! It just isn’t possible! Some of the best doctors in the world for Cannon’s particular issues are going to be looking my baby over starting tomorrow morning! It’s such a miracle! We check in at 8 a.m.!
It was a bit of a rough trip out here. Recently, Cannon has developed quite a fear and/or anxiety in regards to leaving home. He can hardly handle it. Going places had become restricted to the bare essentials…..church and therapies. Grandma’s house was even out. He will become almost breathless…..There is intense fear in his eyes…..He asks constantly to go home…..And if I say we can’t right now, he will ask for the game plan over and over and over and over right up in my face. He will finally cry hard and have a complete and total screaming meltdown. I have talked to him about this and asked him why. He just says “I’m going to throw up.” Poor kid. He has just about “christened” everywhere we go…….church, the movie theater, etc. If we all felt like we were really going to be sick constantly…..I think we would be afraid to go anywhere, too. All the more reason to write him a good social story for the trip……
So, as I was saying, it was a rough trip out here. We had to wake him at 3:30 a.m. to do his flush and be ready to leave for the airport by 5. On the ride and the flight from AZ to TX…..he mostly just asked for the plan intently over and over. He got a little teary but was mostly ok.
But then we had a 3 hour layover in Dallas and he really struggled. He was weak and tired and it was all just too much. We found a play area and that helped for a little bit……
…..But while we were trying to grab some lunch…..He completely lost it and I had to take him out of the restaurant and to the bathroom. I gave him some Valium and later Tylenol. It was very, very intense. He calmed slightly and began to fall asleep just as we were about to get on that last flight.
But woke up in the transfer from wheelchair to plane. He truly tried but couldn’t get back to sleep.
That last flight wasn’t easy. It was all I could do to keep him calm. He was also incredibly nauseous and spent most of it with an air sickness bag by his face. He drew this pic on the iPad for me. When asked, he said it was a sad boy pointing to his tummy and saying “I’m hurt.” Sigh…..we are where we need to be.
As I mentioned, we are staying in the Ronald McDonald House across the street from the hospital. It is such a beautiful place with so many wonderful caring people. I can’t wait to tell you all about it AND to go home and volunteer at the one in our city. For now, I will just show you some pics from all the amazing spots in this house. I hear it is the largest one of its kind in the world. So impressive! So helpful! We are so, so grateful to be able to be here.
Today, we are just hanging out and exploring the house in VERY short stints. Cannon is very sick and weak. We are only able to give him clear liquids for nourishment all day and lots of Miralax. We also have to lay off some of his meds. And he has to be NPO (no food or drink) as of midnight. Not easy! And it shows.
So, tomorrow……..the plan is to check him in and begin another cleansing process with Go Lytlely solution. Our old friend from all our hospital cleanses. Known to most as “that horrible tasting stuff you have to drink before a colonoscopy.” My understanding is that doing a full history, initial evaluations, labs, and cleansing are mostly what is on the agenda for Day 1. I will tell you more about Days 2 and 3 later.
Many of you have asked how you can pray……I actually do have specifics…….
1) My understanding is that the first thing that will be done is to stick Cannon with an IV and get an NG tube in. The latter is a tube that goes in through his nose and down into his stomach. This may not sound that bad but it is such torture for my Cannon. So much so that LONG ago, our home hospital began putting him under each time he needed this done. To be as humane as possible considering all his issues. We don’t even change him and put him in a hospital gown. We walk into a room…..fully clothed…..and they immediately give him the mask and take him down within 30 horrible seconds. But it’s only stressful for 30 seconds. Once he’s out……they undress him, gown him, put all tubes, wires, cuffs, and I.V.’s in, put the “no-no’s” on his arms (velcro cuffs that go over his elbows and don’t allow him to bend them), and tape socks over his hands so he can’t pull anything out. When he comes to, all is done and it’s still not easy. But it’s the plan we came up with over time to keep things as calm as possible. BUT tomorrow, we can’t do that. Anesthesia slows motility and that is what we are testing. So, it’s a no-go. He has to tolerate it or we have to FULLY restrain him or stop all together. So, prayer request number one is that he tolerates the initial I.V. and NG tube placement. I am also trying to convince them to put the solution through his Chait Button in his abdomen. He would still have to have the I.V. but no NG tube if this can happen.
2) Another thing we discovered over time was that while the Go Lytely solution is going through his system…..we had to keep him under conscious sedation. This is Valium through his I.V. to keep him chilled out enough to tolerate it all. Another example of how I kept hearing him called “the anti-protocol” by the docs. Cannon has a Severe Sensory Processing Disorder. This affects all areas of his life. Any ingredient (even a trace amount), medicine, etc that causes mild to moderate irritation in us…..sends him through the roof. He is like an animal! But….Valium slows down motility. So, he can’t have it. Prayer request # 2 is that he can tolerate this visit with no pharmaceutical help. That’s a big one! A huge one – actually. We have waited since May 2014 for this trip to happen. They have told me that if any motility related problem exists in our Cannon…..their equipment and procedures are so advanced…..they WILL find it! But he has to get through the testing AND somewhat cooperate throughout.
We have dubbed this year…..2015….“The Year Of Hope” for our family. Between this opportunity to get him before the best health experts for his issues AND getting the service dog in November…….It’s a big year! It has so much potential to change Cannon’s (and our family’s) life so very drastically for the better! We would cherish and so lovingly appreciate your prayers! We believe with every fiber of our being in the ONE who hears those prayers. And that he listens! Tonight, I read this book to my angel…..in preparation for the next few days. It was perfect! I highly recommend it! The moral was to trust God….even in scary tough, confusing situations. He has a wonderful plan…..He loves us……He is kind. And in the end…..it really will all be okay. To know and remember this in your heart and mind. See…..perfect!
GOD BLESS YOU ALL!!!!!!!!!!! WE LOVE YOU!!!!!!!! HOPE WILL LEAD US ON!!!!!!!
“I am with you and will watch over you wherever you go.” – Genesis 28:15
“I love you, Lord, my strength. The Lord is my rock, my fortress, and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold.” – Psalm 18:1-2