Another Day…..Another Hospital Stay

Today was an interesting day filled waiting, more waiting, fun, nervousness, worry, not so much fun and no fun at all.

This morning, Cannon woke up at 5 a.m. ready to go. He begged me immediately for something to drink or eat as he had not had anything since the previous afternoon. We were waiting to start the procedure and they didn’t want anything in him that he could later throw up. I had asked if we could start as soon as he awakened because I knew this would happen. They said we would try but it would depend on scheduling. So, I let him watch a couple of videos and we read some books until about 7. Then, we headed down to the playroom where we would spend the next few hours. Cannon played with cars, trains, puzzles, books, Mr. Potato Head, the play kitchen, and his most favorite….a ride-on car. When he discovered the latter, it was all over! He was hooked! My boy needed as much sensory stimulation as he could get his hands on and this was his ticket to sensory heaven! He hopped on the car and took off out the door of the playroom. Into the halls of the hospital. Those halls would not be the same for the next few hours! 🙂 Cannon is a very tall 4 year old so his legs were entirely too long for him to comfortably ride on this car. But, he did not care one bit. One look at that long stretch of open hallway (real estate) and he giggled. Then, he pushed off as hard as he could and tore down it! I could not believe how fast he was going! I literally had to run behind him to keep up! He wasn’t so good at steering out of the way of things at first. He would graze a cart of linens, veer into a doorway, or hit a nurse’s chair. But, eventually, he figured it out and was all good. Off and on, but mostly on, for at least 2 hours, maybe more….he did this. Cracking up nurses, startling doctors, and amazing other patients with speed as he went. We he got to the intersection of 2 hallways, I would have to beg him to slow down or just grab him so as not to run down some poor, unsuspecting passerby. He was happy! He wasn’t exuberant because the poor guy was so hungry and in pain……but he was as content as he could get. And I was proud, because he figured out what his body needed and took care of it. Not something he is always capable of doing.

The doctor’s and I had decided the previous night that instead of doing conscious sedation in his hospital room (like we usually do), we would send him down to Anesthesia. The reason being that they could get him down and back up faster…..also allowing us to start the clean out faster. We agreed. So, FINALLY, around 12:30……they came and got him for this. We were taken to a holding area to meet the anesthesiologist and nurses and also to sign the consent forms. After that we moved to the procedure area and I was able to remain with Cannon throughout. Mark had arrived earlier with Townsend but they went to lunch during this time. The process was this. They held a mask on his face with the special gas. (Hardest part ever…..to watch him struggle, not understanding, and then to go down so hard that he looks as if he is no longer with us. I don’t like it at all.) As soon as he was out, one group of nurses began starting his I.V. and the other worked on getting the N.G. tube in place. It didn’t take long at all and before I knew it, we were wheeling him into Recovery. In Recovery, we just waited for him to wake up and the Anesthesiologist gave him some extra medicine to hopefully help him come out of it easier. That did not work. He was crazed when he came to. So, they got permission to give him more and I think they even gave him more after that. I was too busy trying to wrangle him. The trip back upstairs was more of the same and I was just praying they would have his Valium ready when we got back to his room. No such luck. And when they did give it to him, it wasn’t enough. So it was boosted, I think, 3 more times. To add insult to injury, the clean out medicine was begun during this time. This causes tons of pain and cramping until it is done. What an extremely tough few hours. He just fought and fought….all while screaming at the top of his lungs “TAKE IT OFF!”

Towards the tail end of this rough patch, when we finally saw signs of him settling down, “Missy” the therapy dog and her owner came by. I love when this happens. Cannon always seems to enjoy it. Missy got up on the bed and let Cannon pet her. He wasn’t much in the mood for that but he obliged. Then, we watched her do some tricks. She was able to bounce a doggie treat off her nose and catch it in her mouth and also catch a thrown frisbee and ball. Townsend was ecstatic! He just loves dogs! Cannon likes them but no where near as much as little man. Both boys got to throw each item to Missy several times. Cannon didn’t cry or scream during this time and he seemed to like the experience. We were so grateful for their visit!

 

Around 5:30 p.m., I reluctantly left to take Townsend down to the cafeteria for dinner and a special treat. I always try to take a few minutes with him, just us, when he comes to the hospital. These stays, even though not too terribly long, always seem to alter our relationship for a while. So, I do my best to prioritize him as much as possible in the hospital and especially when we get home. Townsend and I had fun. Dinner wasn’t too bad for a hospital cafeteria and he was THRILLED with the chocolate pudding brownie parfait we had for dessert! Not the norm around our house…..so it IS a real treat. On our way back to the room, we stopped in the Meditation Room and said a prayer for Cannon. It was so sweet to hear Townsend pray for his brother and I was proud of how still he was when I prayed. There is a huge aquarium in that room which is a big draw for my little buddy! When we got back upstairs, Cannon seemed okay. Mark had removed the sock that covered his right hand and they were playing with the iPad. We generally have to cover both his hands during our hospital stays……to keep him from pulling out the tubes. He also has to wear these stiff bands over his elbows (called “no no’s”) to essentially do more of the same. Townsend crawled up on the bed and the boys played with their Daddy and the iPad for quite a while. I got ready for bed, even though it was 6 p.m. because once Mark left…..I would’t be able to leave Cannon’s side, even for a second. He might be restrained but he has ways he can get to those tubes. Before Mark and Townsend left, we watched “It’s the Great Pumpkin, Charlie Brown”…….one of Cannon’s faves. I snuggled in a chair with my little man while Mark got in as much time with Cannon as he could. They left around 7:30 and fairly soon after we began to see the “results” of the medicine. Don’t worry! No descriptions will be provided! 🙂 Let’s just say, the bed was changed countless times and leave it at that. He finished his first gallon of Go Lytely (the solution given to produce the clean out) around 3 a.m. and an x-ray was done at 4. We will see what it says and what will come next! Thank you so much friends for following our journey. And if you have made it this far, for putting up with my complete and utter inability to edit myself! God bless each one of you!

Back In The Hospital

Hi friends! I just wanted to update you guys on our latest setback.

Cannon has been struggling with his same old belly issues for the better part of this month. I have been documenting the issues, treating him as best as we can, and updating his doctors throughout this time period. Last Tuesday, things had reached a breaking point and I took him for an x-ray at an Urgent Care. The results were relayed incorrectly to us and we didn’t even find out there was an impaction until Friday when the report finally made its way into our G.I. Doctor’s hands. Grrrr! His treatment plan was for us to attempt an at-home clean out on Sunday with follow up x-rays and labs on Monday. So, Sunday I gave him a ton of Miralax and braced myself for a long day of diaper changes. It was not fun to say the least. The x-rays and labs were done first thing Monday morning and by Tuesday afternoon the results were finally in. But neither our Pediatrician or G.I. Doctor were in the office. Therefore, we had to wait another day to get an answer as to what to do next. We battled internally with whether we should just take him to the E.R. We knew in our hearts and through watching his behavior that it didn’t work. But we decided to wait because we wanted a direct admission, if possible. To skip the E.R. Just to avoid the extra stress on Cannon. So, finally, this afternoon we were told to bring him in. We got him settled, did baseline vitals, history, and an x-ray. The staff has decided that we will wait until the morning to put in the I.V. Once that is done, they will begin the conscious sedation that he requires to be able to handle what comes next. The placement of the N.G. tube in his nose. This tube is where the medicine that will clean him out goes. He will be given one gallon and then re-x-rayed. If he isn’t clear, they will give him another gallon…..followed by another x-ray. I think you see the pattern. Each gallon takes about 24 hours to go in. When all is clear, we will probably remain a day or so to help manage the pain that comes after Cannon takes all this medicine. It reeks havoc on his stomach! I will try to update ya’ll as much as I can.

I do want to say that to some…..this may seem just terrible. And it is. But….the victory in all of this is that we have made it 5 months since his last hospitalization for this issue! That is a huge improvement over what had been the norm for too long! Hospitalizations every 1-2 months! So, tonight we have mixed emotions. We are thankful, nervous, and sad. Thankful for the lull, nervous for what is to come, and sad to see our baby in pain. But God knows our every thought and feeling and is giving us comfort and strength. As we were packing for the hospital, I stopped for a moment and looked at Mark. I said, “Why is this so normal?” I felt as if I was too under control and calm about the situation. Yes, we are used to this but please don’t miss the amazing part. God has given us so much peace, clarity, and confidence in how to deal with these situations. He is so faithful to us, even in the struggle. He deserves all the glory! And I feel so blessed and loved!

In a quick closing…..I have been on a Hillsong kick as of late. Listening to any and all songs of theirs I can get my hands on! There is this one that I can’t get out of my head or my heart. God has been using it to remind me that He will always be here and that all I need to do is draw near. I pray this song blesses your heart as it does mine! Much love friends!

http://www.youtube.com/watch?v=33aGaYAZvL4&NR=1

Blissful Dreams

While on our recent trip, Cannon was invited to take part in an awesome experience!  To go horseback riding at a place called Stardust Farms in Huger, SC!  This farm has a non-profit organization there called Blissful Dreams that works with Special Needs children and adults and “are dedicated to providing, compassion, love, and support to anyone in need.”  Their mission statement declares they are “a horse farm where everyone is greeted with open arms and open hooves and no one is judged for who they are or where they come from. “   Participants “that feel they don’t have a place in this world, are welcomed into building a special relationship with a special horse. “

We had been telling Cannon that we were going to go riding.  He was apprehensive and would yell “no!”  (New things and ideas aren’t usually well received at first.  You have to get him there and give him a nudge to give it a try and THEN see what his true feelings are.)  When we arrived, we were greeted by a woman named Mrs. Cheryl who helps out around the barn and volunteers with Blissful Dreams, too.  She got down on Cannon’s level and said hello.  (This is the very best way to greet a child like Cannon.  Force yourself calmly into their world and make them notice you.  It’s not that Cannon doesn’t want to….its that he either doesn’t understand what he is supposed to do or is too anxious.) She calmly talked to him and brought him around to show him each horse in the barn:  Waffle, Cupcake, Mouse, Denny, Oliver, Cinnamon, Peanut, and Godfrey.  He cautiously and quickly petted a couple, walked inside one empty stall, and watched one horse eat.  Then, “Godfrey” was brought out of his stall and his bridle hooked to each side of the barn.  Mrs. Cheryl coaxed Cannon into touching and saying hello to this horse.  He was apprehensive and standoff-ish.  He didn’t want to be touched and wasn’t too sure about touching the horse.  When we mentioned that he is fascinated with numbers, she brought out some brushes and showed Cannon how to brush the horse……while counting each stroke.  He perked up and did this quite a few times.   During this time, the founder of Blissful Dreams appeared on horseback.   She had been working out in the ring.  Her name is Jamie Irby Kohler.  Her kindness radiated in her smile and the soft and gentle way she spoke to Cannon helped both he and I relax a bit and become more comfortable.

Later that night, I read Jamie’s story.  How she began doing what she is doing now.  I was very moved, to say the least.   When she was 21 years old, she was living her dream as a professional hunter/jumper rider, getting paid to do her favorite thing in the world……ride horses.  But God began knocking on the door of her heart.  Bringing her to the realization that she wasn’t completely using the gifts and talents HE had bestowed upon her for HIS glory.  So, in 1998, she began doing something about that.  She began working with children with Autism.  She taught them how to ride and how to share in the love and friendship that can be established through interaction with horses.  Jamie and her husband, Tom, began praying about how to start the “right” program with her horses.  They decided to take a trip to Oregon to visit Crystal Peaks Youth Ranch for an informational clinic in June of 2008.  Crystal Peaks is run by Kim and Troy Meeder and uses horses to “rescue and minister to youth with all different kinds of abilities and backgrounds.”  It became clear, while there, that God was leading Tom and Jamie to start a similar program at Stardust Farms.  So, they returned and by December of 2008 had done just that.   Blissful Dreams is run by Jamie and her family along with lots of wonderful volunteers and “continues to grow and flourish by the grace of God each day.”   God has shown Jamie over and over that horses can still be her career but she could also channel that love into helping and showing love to others.   She says that “horses consistently share qualities of God.  They are giant but gentle, they love unconditionally, they are extremely sensitive to our thoughts and feelings, they are always forgiving, very patient, and they give us hope to do amazing things.”   And Mrs. Cheryl has a story, too.  Her son is a young adult on the Autism Spectrum.  He was misdiagnosed many, many, many times in his life and wasn’t diagnosed properly until his late teens.  He also volunteers at the farm.  We got to meet him and his quiet, sweet spirit was evident.  Along with his love for the horses.  Mrs. Cheryl’s understanding, compassion, encouragement, and kind words towards our situation were very special and precious to us.

After signing some consent forms, the women began saddling up Godfrey.  He was led outside the barn and a step was placed next to him to allow for a safer mount onto the horse.  Jamie got on first and then Cannon was placed in front of her.  He was immediately unsure and a little uneasy.  And he got very frustrated when the required helmet was placed on his head.  With Cannon’s sensory issues, you never know what exactly will tip him off.  But this was definitely one of those things.  He was NOT a happy camper!  We began walking for a bit.  Jamie and Cannon on horseback.  A couple of volunteers, Mrs. Cheryl, and I all walked along beside.  I was trying to video every second of the experience.  I say trying because watching this part of the video will only make you nauseous.  🙂   Down a long winding path we went and around a small pond with ducks swimming in it.  We made a brief stop to allow Cannon to attempt a shot with a basketball into a hoop from horseback.  He wasn’t really excited about it (still bothered by the helmet) but he tried.  Not enough height on the shot.  But, he did try.  We were going to try again but his growing agitation with the helmet let us know that we needed to get to the ring sooner rather than later.  So, we kept walking down the path, through the gate, and then into the ring.  It was a nice sized ring with your typical white fence around it and a few jumps set up inside.

Jamie and Cannon started walking around the ring and quickly began trotting.  Cannon refused to allow himself to enjoy it because of the helmet.  Fussing, grabbing at it, and saying “Take it off!  Take it off!”  So, then she gave him the goods!  What every kiddo with sensory issues like Cannon wants.  Lots of stimulation!  They began to canter!  All of a sudden, his emotions did a 180.  A huge smile broke across his face and he was giggling with excitement.  He loved it!  But crazily enough, the minute she slowed the horse to a trot or walk…….he went right back to frustration mode and scripting phrases of displeasure.  So, she would do it again.  Take Godfrey back into a canter and his happiness would resume……just like that!  It was almost laughable!  At one point, when they had slowed and Cannon was acting out……she stopped the horse completely.  Jamie told him she was giving him time to relax and calm down. (An important lesson for a kiddo like Cannon.  Control your body and emotions when necessary.  This is a really tough task.)   Eventually, with a lot of encouragement from her and our little crowd gathered outside the ring, he did and she instructed him how to restart the horse.  He needed to say “walk on.”  It took a while but eventually they got going again and Cannon was happy again.  When his turn was finished, he got off without issue and gladly returned the cursed helmet to its owners.  🙂 My silly guy!

And then……it was my sweet Townsend’s turn!  Yes, he got to go, too!  He was excited!  It is so amazing to me, as a mom, to see the differences in my boys.  Cannon has Autism.  Townsend does not.  And it is in times like these when I see the drastic-ness of this fact.  Townsend walked right into the ring with a smile on his face, got up on the horse, accepted the helmet, and said “walk on”……..no problem.  He IS 2 though and it was a big horse.  So, I won’t say he was leaping with joy at first steps but it definitely grew on him quickly.  Where Cannon was only happy to be cantering, Townsend preferred to walk and not go above a fast trot.   Townsend chattered away about everything from what the horse was doing, to birds flying in the sky, to singing a silly song.  Cannon only spoke when forced to or when voicing his frustration through scripting.  When Townsend’s turn in the ring was over, he and Jamie walked Godfrey back down the path, around the pond, and back to the barn.  After dismounting, we played around a bit.  Cannon tried on Mrs. Cheryl’s glasses and really liked that.  We even put them on the miniature horse, Peanut!  Townsend just wanted to sit in a kid-sized chair under a shady tree and drink some water.  We got a few pictures with our new friends, gave some hugs, said our big thank you’s, got some info on farms in our area, and then headed home.

What a great experience my boys got to have at Stardust Farms!  I truly got to see this woman’s heart for kids like Cannon.  Blissful Dreams has the ability to teach them so much.   Not just how to ride but how to conquer their anxiety, fears, and emotions.   Deal with sensory issues, follow directions, show and receive love and friendship, gain confidence, all while strengthening their core muscles.  This would be extremely beneficial to Cannon because of his stomach issues.  It’s all muscles in there (all his problem areas) and if he could get on a horse more often it could go a long way towards giving him a better chance at staying healthy.  Hey, it’s worth a try, right??!!  I have looked into programs like this in our area in the past and come up short.  The only one I ever found had a minimum age requirement he was nowhere near and a couple of year’s long waiting list.  Jamie gave me some websites to check and see if there are other options I wasn’t aware of.  I was grateful!

Friends!  You can support this ministry!  I say ministry because that is exactly what it is!  Not only do they do all they do from a physical standpoint but they are putting feet to God’s call to love and serve others!  Jamie Irby Kohler has a heart for our Lord and I beg you to get involved if you can.  Volunteer, sponsor a horse, purchase items from their wish list, donate, and/or just spread the word about this great organization!  So, here is the 411.

Blissful Dreams

935 Blissful Lane

Huger, SC  29450

(843) 442-0621

Email:  JamieKohler1@aol.com

www.BlissfulDreams.org

 

You can also look up Crystal Peaks Youth Ranch (www.crystalpeaksyouthranch.org).  They have a listing on their website of other programs like theirs and Blissful Dreams’.

But most of all, please pray for Jamie and what she is doing!  These special children and adults that she helps are deserving and worth the time, money, and effort!   And they need people like Jamie who understand their issues, what they need, and how to teach them.

And now…….enjoy this special video/slideshow we prepared to show you a little more from our day!  God bless each of you!   And may God bless the ministry of Blissful Dreams!