World’s worst blogger here! About to head off to bed before one of the biggest days in my family’s life! Tomorrow…..after 2 years of searching for the right agency……paperwork….interviews…..more paperwork…..fundraising……LOTS more paperwork……a copious video filmed and assembled…..and waiting, waiting, WAITING……Cannon will FINALLY get his service dog!!!!!!!!
And he is the prettiest dog I have EVER seen! (I know this has nothing to do with his purpose….but gosh darnit…..he is PRETTY!)
We had been told that we would receive a picture and letter from the dog 7-10 days before our class began. We waited super anxiously…..so ridiculously excited to get our first glimpse. The waiting and constant refreshing of my email about drove me crazy. And we didn’t get it until 5 days before class!!!!!! But we got it at a perfect time…..so perfect!
We had been waiting and hoping all day…..but nothing. Cannon had been in terrible, terrible pain all day. I wanted so badly to give him this news. To give him something to be happy about. But…..crickets. Mark and I laid down with the boys for our regular nightly story and devotion reading time as well as prayers. When we finished, I decided to jump up one last time and check to see if the email had come through. I grabbed my phone out of an adjacent room and started walking back in Cannon’s room. When I saw the email THERE….I almost dropped the phone. My hand went straight to my mouth and tears dove out of my body. I tried to read the letter but I’m not sure anyone could understand me….I was crying so hard. It was a beautiful moment. All of us together. Having just prayed. And getting our first look at this beautiful creature. Our new family member and Cannon’s future best friend, companion, and protector. HE IS SO PRETTY!
Have a look.
And one of him as a puppy! Awwwww!
A precious element was the letter written from his new pup.
Cannon has decided to change the dog’s name from Drake to Rocket. He has been adamant about this ever since a friend suggested it. Sounds like a pretty dynamic duo. Don’t you think? Cannon and Rocket! 🙂 I can’t wait!
One crazy thing that happened while packing for the trip! I asked Townsend to grab off our shelf….the next book in the series of books that we read nightly. The one we are currently reading….we will finish in a couple of days. He does, hands it to me, and I couldn’t believe it! Check out the title! Coincidence?! Nope!
Here is a video and a few pics of our journey to Ohio…….
Finally….I hope that this amazingly trained animal will further help my kiddo realize his purpose in life. I pray that he will guide him, love him, comfort him, and give him the strength to pursue his true potential! Watch out world! With God, family, friends, and his Rocket by his side…….Cannon is gonna be UNSTOPPABLE!
I admit it. I do. Lately, we have been feeling quite a bit sad and helpless. Helpless, as well as, overwhelmed. Overwhelmed with circumstance, responsibilities, diagnoses, and life right now. Pretty darn emotionally exhausted and super tired physically.
When last I blogged, I asked you to pray for Cannon’s Endoscopy. I shared the strategic battle plan of prayer that I had been praying over his G.I. doctor. Well, we got answers. Lots of them. And as usual, it’s complicated. That’s our Cannon!
Let me begin by backing up slightly. About a week prior to Cannon’s scope, the boys and I went to our beloved Beads of Courage for an event. We enjoyed Bead Challenge Day where, among other things, we watched talented bead artists make tons of beads to fill BOC’s Bead Pharmacy.
The event took place at various locations across the country. One of the things we did at the event was string some beads onto bracelets.
We struck up a conversation with a young woman and her mother seated across from us. During the convo, she shared her diagnosis. Gastroparesis. Remember that one blog family? It was what Cannon’s doctor feared he had last year and was our reason for going to the hospital in Ohio. Where they specialized in it. They did 2 tests for the disease while we were there. One test couldn’t be completed as Cannon ripped the precisely placed tube out upon waking from anesthesia. The other was done and completed. The Gastric Emptying Study. It had a normal result. They told us this was definitive. He did NOT have Gastroparesis…..but Functional G.I. Disorder instead. I told this young woman our story and she kind of laughed. She said she had had 4 of those studies. 2 that were positive for Gastroparesis……2 that were negative. Since it is a relapsing condition….partial paralysis…..sometimes the stomach works and sometimes it doesn’t. If you do the study when all is well…..it will be negative. If you do it when all is not well…..it may be positive. So, bottom line……the test isn’t fool proof. She had the feeding tube to prove it. I found this conversation very enlightening. When we left Ohio in February, I felt okay with what they had told us. Although, I was surprised….as Gastroparesis had really made all the pieces fit together. I was thankful to have met this young woman. It put this thought back in my mind and allowed what came later to not be such a shock.
Back to the recent scope. Afterwards the doctor came in (just like last year) shaking his head. And again (just like last year) asked me when Cannon had last eaten. I remembered exactly and we did the calculations. 17 hours prior. He revealed to us that Cannon’s stomach was STILL full. I gasped and teared up quickly. My poor baby! How miserable this must feel. Eventually I got out a question. “Does this mean he definitely has Gastroparesis?” He said, “There is still food. There is Gastroparesis.” My heart sank. Another life long, chronic condition.
That was bad enough……but there was more. Reflux. But not just any old bout of reflux. Horrific. Major damage. He actually said that from what he saw “we are weeks away from losing his food pipe.” LOSING HIS FOOD PIPE?! This news was almost beyond my comprehension. Prior to our trip to Ohio, Cannon was on 3 doses a day of reflux medication. While there, they informed us that the sole goal of a reflux med was to protect the esophagus. And that 1 dose a day would do that. 3 was excessive. So, we listened and eliminated 2 doses. One of our reasons for going there was to edit medications. We knew he was over medicated at that time. We tended to add to the regiment constantly and never take any away as issues improved. So, we listened. And now…..this news. It was tough to take. He informed us we absolutely HAD TO put him back on the 3 doses immediately or else…… So, of course, we have.
And there is more. He is terribly concerned about aspiration. So much so, we will be seeing a Pediatric Pulmonologist soon. He said several times (almost in disbelief) that he had seen it happening with his own eyes through the scope. Instead of fluxing acid like what is normal with acid reflux….and because his stomach is often full of food for long periods of time….he is fluxing the food. He has a great fear that he will aspirate this food and we will be in real trouble. He told us we need to have eyes on him at all times…..particularly at night when reflux is at his worst. Getting a new video monitor for his room was a must as well as propping up the head of his bed considerably. Making sure to feed him early in the evening…..at least 3 hours before bed. Smaller more frequent meals are best.
A week later, we heard back from the biopsies taken that day, as well as the lab report. The labs showed low iron. Which shouldn’t be as he takes iron 3 days a week. So, we had to increase the frequency of that supplement. P.S…Iron is very hard on your stomach. No bueno.
AND the pathology report showed something called Eosinophilic Esophagitis (EoE). This was explained to me as “asthma of the esophagus.” It can be the result of reflux or allergy. The pathologist noted that the findings were consistent with allergy. The treatment…..more diet restrictions. Most of which we already eliminated…..dairy, wheat, gluten, soy, corn, and eggs. I had a good cry after hanging up the phone from hearing “Eliminate peanuts, tree nuts, fish, and shellfish.” Cannon LOVES almonds for snacks, and devours peanut butter. Salmon is also one of his most favorite things on earth. BOO! He already has so many restrictions. It kills me to take away foods that make him happy. The plan is to eliminate these things for 3 months and then get another scope. If all is better at that time, then we can add back in ONE of the eliminated foods. 3 months later…..another scope. If all is still well….another food added back and later… another scope. And so on. We also have to see our allergist to get a highly specialized allergy test.
The other thing the nurse reminded me on the phone that day was that now that Cannon is back on all the reflux meds…..he has to go back on the FODMAP diet. When you are killing ALL the acid in your stomach via meds…..it can become a breeding ground for bacteria. So, he has to take an antibiotic for that and eat in a way so as not to feed that bacteria. Bottom line…..between the 2 diets I have 15 pages of diet restrictions to cross check before feeding my child. Hence the previously mentioned overwhelm.
All of this is a lot to take and I’d be lying if I said it has not been a taxing and emotional time. To boot, Mark’s crazy work schedule requires me to always be the one to get up with him at night. Cannon’s button has begun leaking badly and we have had to increase the agitant in his daily flush which has made him nauseous again. And on a whole other note, we are facing a 20% pay cut after the 1st of the year.
The hardest part, though, has been seeing Cannon in so much pain. He has bursts of energy at times. And we are so thankful for that. He can go outside and play for a bit. But he tires quickly and often needs to be carried after that. He, sometimes, does ok in the mornings after the flush until about noon……he goes into a free fall. I would say 80-90% of the time, he is telling us he hurts. His eyes are terribly sad. He also isn’t sleeping well AT ALL. He gets up frequently during the night to tell us he is hurting. And there isn’t much we can do but give him right now…..Tylenol or Ibuprofen. IT IS SUCH A HELPLESS FEELING!!!!!!!
But, let me be clear……we feel HELPLESS but we are NOT HOPELESS!
Last night, I was reading our devotion to the boys from a book called My Big Book of 5 Minute Devotions. It was about the process of how the oyster produces the pearl. Through struggle, discomfort, and irritation comes this thing of incredible beauty. Out of bad comes good. Purpose from pain. I was thankful to share these words with my little loves last night.
Anyhow, I think that is all. I’m sure I have forgotten something cuz this mamma is wiped the heck out! But, this is most of it.
(Oh! We saw his surgeon this week and she is placing a call to the doctor in Ohio. With all these new developments, she wants Cannon to see him when we travel back that way in December to get his service dog. We will see what he says.)
Our battle plan of prayer will now evolve to fit our current needs. (More on that soon.) Our top priority at this time may sound strange. It’s to be broken. To let it out. To be real with my God. Vulnerable. To come to terms with these new words in our vocabulary, make ALL the necessary adjustments, and then move forward. With strength, acceptance, and the constant goal of giving Cannon the best, most healthy life possible. We will be ok. I leave you tonight with this song I came across recently. It is the words/heart of a lovesick Father…..begging for closeness with his child. Yearning to be trusted in hard times. Allowed to take over. Our family was built on faith and on that we WILL stand. God bless you blog family! Thank you for caring! We love you!
“So, let the pieces of your heart fall into my arms. I want to be your hope. So, won’t you let me….hold you through it. Let me carry you. I know it feels you’re at the end….but here your story is just beginning. I know your tomorrow. I know where you are. Though you can’t see past the moment……I see beauty in the broken.”
This morning, after 3 months of intensifying pain……Cannon will be having an endoscopy. His doctor will be taking a look all around his stomach, esophagus, and colon. And take biopsies in various areas as well as a ton of blood for lab work. He had been doing better since our trip to Ohio. And still is as compared to the condition he was in at that time. He hasn’t been vomiting at the incredible rate he was, isn’t totally lethargic, and has gained some weight. But starting around the beginning of June, the pain complaints kicked up. They very slowly increased at first but in the last month have returned with a vengence. The light that had returned to his eyes is fading big time. A sad, squinty look has become the norm. And he can look more pale. In an attempt to head this off and not let it get out of hand……we reached out to our G.I. doctor. He agreed it was time to take a look.
Recently, Mark and I were able to slip out and go see the movie “War Room.” If you haven’t done so yet…..GO! Like…..right now! It is incredible! Such a pertinent story for most all. In the movie, a woman whose marriage is crumbling is discipled by an older woman who encourages her to develop a battle plan in her prayer life. And shows her the completely cleaned out, distraction free closet where she prays. Attaching sheets of paper all around with various, specific prayer topics. A prayer strategy…..she calls it. I was very inspired by this movie! And to take a more strategic approach to my prayer life.
In that spirit, I pray for Cannon’s doctor this morning…….
I pray for his hands. That they would be gentle and move skillfully through my love’s little body. I pray that no damage would be done. I pray that his hands will be guided to the specific spots that need to be biopsied. And any areas that must be seen.
I pray for his ears. That he would listen intently and thoughtfully to us as we describe Cannon’s recent behavior and complaints. Hearing us completely and possibly making connections that need to be made.
I pray for his heart. That it would be open to Cannon. That he would empathize in a way that doesn’t allow him to give up.
I pray for his eyes. That they would be opened wide to whatever is going on.
I pray for his mind. That it would be clear of all distractions and willing to pursue a solution for our Cannon. Whether they find something and whether they do not.
I pray for his mouth. That he would speak life to us through solutions.
I pray for his feet. That if he needs to do more research or reach out to other docs for advice……that that will be done. No more ego. No more resistance. Because Cannon’s quality of life is all that matters here.
I pray this with all my heart and on very raw knees………
I am not and have never been eloquent in my prayers. But I know that my Father does not need pretty words. He just needs to hear my heart, my soul……being poured out before Him.
I have to share some wonderful news with you blog family! Something so out of the blue but fantastic happened on Sunday, May 10th. Something we have agonized over, prayed for, wracked our brains over, and just been down right frustrated with for years…..finally, finally, FINALLY began to resolve!
For 6 1/2 years, we have been trying to potty train Cannon. We tried every conventional method. We tried every out there and bizarre method. We tried every reward based program. We tried outright bribing him. We tried taking him to the restroom at predetermined time periods. We tried collecting data to try to predict the times he was most likely to need to go potty. We read him the boys potty books and watched the Elmo Goes Potty video until we both had it memorized. We read many, many, many books, articles, and blog posts for parents, studied research, etc. Everything we could get our hands on pertaining to this topic. We consulted various doctors as well as other moms of kiddos with Autism. We feel like we tried absolutely everything. But nothing, and I mean nothing, worked.
Our son had not one ounce of interest in the issue. You could let him run around in just underwear (or naked) and he would relieve himself in either fashion…..no problem….anywhere. He didn’t care. You could ask him if he was wet and he would always tell you he was dry. Even if the evidence to the contrary was literally rolling down his bare legs. He didn’t care. It had gotten so bad that our G.I. doctor was really questioning whether or not his body was communicating with his brain about when he needed to go. He wondered if there was a disconnect and if he was even capable of being potty trained….ever. We gave the issue some space but made it clear to Cannon that we knew he could do it. And just kept believing as best we could.
I did my very best to hide this issue from his peers. Because the couple of times it was discovered that he was still in diapers, he was teased badly. So…..for example, during AWANA club time at our church, I would take him to an isolated restroom down the hall from his class while everyone else was outside. That has worked mostly. But I have gotten PLENTY of stares, glares, and questioning looks upon visiting public restrooms with Cannon.
May 10th was just like any other day. Nothing was different. Except that it just happened to be Mother’s Day. It was in the afternoon……after church. I went to the bathroom because Cannon had called to me that he needed a diaper change. This alone had taken years to happen. (Over the last year, he had begun to pee in the potty if you got him there first. He protested and didn’t like it…..but eventually, he would relent and go. And in the last couple of months….every once in a while he would tell me if he was wet and needed changing. But that was it. No news ahead of time). So anyways…..on this day he called me and I went back. When I opened the drawer where we kept the diapers….it was empty. I needed to run grab some more from a stash in the Cannon’s bedroom closet. But first, I did as I always do…..I said, “Would you like to wear underwear instead?” To my complete and total shock…..Cannon said, “Ok.” I almost didn’t notice at first. I had grown so used to the emphatic “No!” When I realized what he had just said I praised him like crazy and made a big deal about how proud I was of him. I let him choose which pair he wanted to wear from the hopeful selection that I had. Dinosaurs….he was very sure of his choice. For the rest of the day, I reminded him every so often to go. I offered sweet treats as rewards for a job well done. And he DID! FOR THE REST OF THE ENTIRE DAY! (I cannot begin to emphasize that this was out of the clear blue after 6 1/2 years!!!!!!) We did put him in a diaper at nighttime but I kid you not…..he stayed dry during the day until Thursday! It was crazy! Our minds were blown!
And then Thursday came and he had 3 accidents. And he didn’t seem to care. I thought…..well that was my bone. He threw it to me… to give me hope…..and now we will go back to where we were. I was disappointed but decided to try again Friday. More accidents. (And when I say accidents…..I mean big, bad, nasty ones.) Sigh. It wasn’t looking good.
But you know what…..we kept at it. Kept believing in him. I reminded him regularly of Phillipians 4:13 (“I can do ALL things through Christ who strengthens me.”) and I praised and rewarded that kid like a crazy woman! I read him the potty books that had been gathering dust on the book shelf for years. I took him out of the house in short stints in underwear. Just so that I could praise him that much more when he succeeded. And there were accidents. But more successes than failures…..thank goodness.
The last week and a half, we set our sights on night time dryness. And all but 1 night…..he has met that goal. And it is because of that…..and a virtually unblemished daytime record in the last couple of weeks……I feel confident in saying that our precious Cannon Luke is officially potty trained! Yep! He did it! He’s AMAZING!
It’s even getting to the point where I can send him into a bathroom stall solo. And then slip in after he’s done to make sure he’s got his zipper up. While I’m standing there, outside the bathroom door…..pretending to hold it. I want to scream to the other fellow bathroom visitors……Do you know how big this is??!! I am on the outside of the bathroom door! Cannon is going all by HIMSELF! Yes, I’m a dork! But, I don’t care!
AND, this week, during a meeting with our DDD (Department of Developmental Disabilities) Support Coordinator……I cancelled our regular diaper order! And filled her car up with diapers to return! Ones that we no longer need! And that now can go to a family that they will bless! AHHHHH!!!! It was the BEST!
The moral of this story people…..especially my fellow Warrior Mommas……is don’t give up! When the doctors tell you it may never happen. When you have exhausted yourself, your family, and your resources trying to make it happen. When your child just doesn’t care and you feel that they never will. Even if he is 8 years old…..or older! Don’t give up on them! But more importantly, don’t give up on God’s ability to do a mighty work in your child. Keep praying, keep believing, KEEP THE FAITH! (Even if it’s a “fake it till you make it” sort of thing!) Our kiddos may never cure cancer. But they may get out of diapers gosh darn it! And from where I am sitting…..that’s pretty great! And for right now, that is my miracle! My joy! My proud momma moment! My life changing news!
And the best gift he could have given me for Mother’s Day! God Bless!
God bless you all for asking! I keep getting texts, emails, Facebook messages, and calls inquiring about how our punkin is doing. GOD BLESS YOU! The answer is……as always…..complicated.
The first big change we have been working on since returning from our trip to Nationwide Children’s Hospital in Ohio has been adjusting the formula of what goes through his Cecostomy tube via his Chait Button. The doc was concerned with the high level of agitant (50 ml’s of liquid glycerin) and low level of saline (80 ml) that we were currently using per our hometown doctor’s orders. He wanted us to move it in the direction of 10-20 ml’s of agitant and 200-300 ml’s of saline. He felt this would decrease Cannon’s likelihood of getting sick during the flush. He also thought if we could significantly increase the saline that we could drop one of his current meds. One we had been concerned about from Day 1. The process of figuring out the formula took way more trial and error than we anticipated. Way more. But this week, we think we finally have it. The formula that does the job but without causing our sweet boy to get too sick. It is 25 ml’s of liquid glycerin to 300 ml’s of saline. This is a little more glycerin than the doc wanted but anything less simply did not work. We also found that the glycerin syringe had to contain a mixture with at least 20 ml’s of saline. Or it would get stuck and not push. The last thing we discovered was that we had to place the mixed syringe in the right order in the progression of syringes for it to be most effective. If we used it first…..Cannon got sick. Last, the flush would take hours or not work at all. We have found that the mixed syringe best works when given as the 2nd of the 6 syringes.
The other change we have made is to drop 2 meds. One, as I mentioned already, had been used to keep his stool hydrated but, for now at least, it seems…..he no longer needs it. Also, we have ceased giving him 2 out of his 3 doses of reflux medication. The doc in Ohio explained that this med was used to protect the esophagus from all of his throwing up. But he felt like it was killing all the acid in his belly….good and bad. And this is what has lead to the bacteria problem he has had for several years. He might need more regular scoping to check for damage now but that’s ok.
The biggest change since we have been back is that Cannon has thrown up very little. This is a huge change from the 2-3 times a day we were dealing with before we left. Praise God! Praise God! Praise God! However, to look at him…..you wouldn’t notice much change. He is still very, very pale. Very, very tired most all of the time. He starts telling me he is tired about an hour after waking and requests dinner and to go to bed around 2-3 p.m. He sleeps A LOT. And his anxiety is through the roof! Leaving the house is an incredible, incredible challenge right now. We hope the letter from the Ohio doc will get here stat so we can get some of the other prescriptions and ideas in place. Now, that we have the first few up and going.
Thank y’all from the bottom of my heart for all the love! We can Never, EVER say it enough! We assure you that we will keep up the hope! Because regardless the curveballs of life…..we have the precious and constant promises of our Father to cling to! (Coincidentally (not!) this is what we are studying this year in Cannon’s homeschool Bible curriculum…..God’s promises!) We will continue to allow HIS love and faithfulness to be our support! His presence…..our strength!
“Our hope is certain. It is something for the soul to hold onto. It is strong and secure. It goes all the way into the Most Holy Room behind the curtain.” Hebrews 6:19
“A word CAN give you strength to face another day! HOPE……HOPE CAN CHANGE EVERYTHING!”
I am so sorry I have made all our faithful followers wait to hear the final results of our trip to Nationwide Children’s Hospital in Ohio. Exhaustion had gotten the better of me. Every time I have sat down to type the last couple of days…..I have fallen asleep. Forgive me. Here we go….
Friday morning at 9 a.m., we met with the Chief of the Pediatric Motility Center, the Fellow we had been working with, as well as the Pediatric Psychologist that is the Clinical Lead for the G.I. Clinic. They had a computer set up so that we could visibly see the results of the Manometry tests they had completed, diagrams on the wall to help us understand as they explained their way through this, as well as other documentation from our visit. And most importantly, they gave us plenty of their time (an answer to prayer)! The Doctor began with some good news. Cannon does NOT have Gastroparesis as was previously thought. The tests done disproved this with 99.something or other degree of certainty. We don’t know what caused the scope back in May to look the way it did. The one that started all of this. But it is virtually and definitively not so. This is wonderful. Gastroparesis is a life long, debilitating condition that we wanted no part of. That was the good news. Then, they placed this diagram in front of us……
……..explaining that each of issues within the circles have to work together to have a positively functioning G.I. system. Through the testing that was done…..Cannon’s problem appears to be with his nerve endings and has led to issues with his Nervous System. The Manometry test done on his colon made this plain as day. I wish I could explain the uber specifics of the tests but I will most assuredly butcher it. I will sum it up by saying that they measured the contractions and compared them to that of a normal person. They determined that Cannon’s contractions of his colon are normal…..perfectly normal. But we, ourselves, witnessed his reaction to those normal contractions and it was awful. He was screaming, fighting, and posturing like crazy. It was hard to watch and get him through. So, what this tells us is that his nerve endings are giving his brain faulty information and causing the eruptions that we see every day. His organs are so incredibly sensitive that they cannot cope with even what is normal. For almost 5 years now, we have known that Cannon has a Sensory Processing Disorder. And when he was diagnosed with that disorder, I remember the Physical Therapist telling us that this affected all areas of his life. But I NEVER thought it would go this far. It truly breaks my heart. My poor sweet boy. He just has so many things making it so desperately hard to reside in his little body. This information gives us so much insight into why he acts the way he does about digestion and so much more. Sensory issues are quite hard to explain and I am not sure I have done a good job. Feel free to ask questions if you have them. I guess the best summation I can think of is this…….Cannon’s body is so very sensitive that even normal bodily functions and sensations cause great pain. Sigh. But now we know……and have to figure out ways to help him.
(On a side note, you may remember that Cannon ripped out one of the tubes that was to be used to do the same sort of Manometry test on his stomach. Therefore, that test could not be done. The doctor feels confident that Cannon’s gastric emptying study eliminates the possibility of Gastroparesis and that the findings in his colon will translate to his stomach contractions as well.)
And now, here it is. Our all new, comprehensive plan for Cannon……..
1) The doctor believes that the formula we are using for the daily flushes of the Chait Button in his abdomen is flawed. We use a combo of sterile saline and an agitant (liquid glycerin). This irritates his colon enough to get it moving. When he first got the button 3 years ago, we tried to just use saline but it wasn’t strong enough to do the job. We had to add in the glycerin. And keep adding and adding and adding. Now, we use 50 ml’s of glycerin to 80 of saline. The doc feels it needs to be more like 10-20 of glycerin to 200-300 of saline. He feels like too much agitant could be contributing to his intense nausea and that adding so much more saline will soften things and do the same thing as Miralax and another drug he takes for the same purpose.
2) Another idea the doc had was to remove 2 out of the 3 doses of reflux medication that Cannon was taking daily. We had described to him how horrible his breath can be at times. I don’t just mean your run of the mill bad breath. I mean…..it smells like the very strongest of chemicals. It can have a “light your nose on fire” type of effect. He believes that by suppressing too much acid was probably allowing more bacteria to grow. Something like that.
3) Cannon was already on an antibiotic but has been for 1 1/2 years. So, we are going to change it up and do something a little different. He would like us to fill prescriptions for 3 separate antibiotics and use one on one week…..another the next week……and then the 3rd the following week. And just keep rotating that way.
4) He feels we should stop 2 drugs altogether …..one was for reflux and the other helped with hydration in his stool. He doesn’t think he really needs them. But he would like to add a med for nausea.
5) We are dropping some of his diet restrictions. Not jumping to processed foods or anything…..but he has had to eliminate all kinds of fruits, vegetables, and more due to the bacteria issue. This doc feels that this is no longer necessary. We will keep things very organic and continue to eliminate dairy, gluten, and artificials. But loosen up a bit. We have to keep the mindset however that his body is incredibly sensitive. If he can’t handle normal bodily contractions and functions without pain and because it is so darn sensitive…….we have to be wary of all ingredients contained in anything he eats. That part is nothing new and I am fine with it.
6) Finally, he wants us to speak with our Developmental Pediatrician about anxiety meds that are successful within the ASD (Autism Spectrum Disorder) community and that are more time released. Years ago…..prior to putting him on a med for ADHD…..his Psychiatrist tried him on several drugs for anxiety. All were horrendous failures and made things so much worse. The Psychologist we met with in Ohio quizzed me about which ones were tried and commented that those were all “fast acting.” He feels that those types of meds may have shocked his sensitive little system and done more harm than good. We agreed. He feels that the implementation of a “slower acting” or more time released med could help Cannon so much with his response to the pain he feels. Particularly when he has the urge to be sick. He says that because he is in pain so very often…..that throwing up during this time has become a “learned behavior.” Not something Cannon wants to do or makes himself do but something his body has just learned. “Oh, ouch…..that hurts! I throw up now.”
That was all probably WAY too much info and I will apologize for that. Sorry y’all. But, we have had so many of you ask for specifics and also have so many friends in the medical field now that I figured being vague wan’t an option. As you can see…..the doc had a lot of ideas. And that is EXACTLY why we wanted to go to Ohio. We felt like over the last 5 years, medicines and restrictions have continued to pile up and not much was ever eliminated or changed. We absolutely hated that and felt like we were beating our heads against a wall. We needed “fresh eyes” and a totally new perspective. And we feel that is exactly what we got. Now, we have a plan in place that we are happy with. One that addresses all the issues…..his flushes, reflux, nausea, bacterial overgrowth, diet, and anxiety. This will not happen quickly. He will still feel very similar to when we left for Ohio for a while.
If we don’t do this slowly…..we won’t know what is working and what isn’t. We are starting with adjusting his flushes. Hoping to find the right balance between what doesn’t overstimulate his colon and cause it extra pain……but not so little that we can’t get it moving at all or cleansed completely. And we are in the process of dropping the 2 drugs I mentioned. The Ohio doc’s recommendations are going out to 4 of Cannon’s docs in AZ this week hopefully via a letter. I will then have to make appointments and/or speak with them all to get things implemented and prescribed. Hopefully, with a slow but steady pace…..we can get all recommendations in place as quickly as possible. So, that’s the plan friends! And we are so prayerful and hopeful that doing these things will make a difference and help life in that precious little body for our incredibly sweet boy much, much more bearable. One friend said to me that she was so sorry we had gotten the misdiagnosis of Gastroparesis. But you know what? I’m not. It’s unfortunate but not terrible. If it hadn’t happened, we wouldn’t have ended up in Ohio. If we hadn’t gone to Ohio, we wouldn’t have this totally new plan. This new plan with the fresh perspective we’ve been craving for years. The Manometry tests that were performed there are not done many places and gave us the specific data to know once and for all what is really going on. Every difficult test and procedure was necessary information. In short, this trip was part of God’s plan for Cannon. We are so confident in that! We are thankful for it! We got the HOPE we were looking for!
One last thing…..I’ve said it before and I will say it again……y’all are awesome! The absolute outpouring of love and support for Cannon and our family has been so positively overwhelming! The prayers have seriously kept us buoyant and strong as well as full of faith and hope. AND THEY WORKED! We are just so incredibly blessed! We have had donations via a couple of sweet friends doing fundraisers through their respective businesses. AND from strangers and even one anonymous friend! Seriously! How could one be more blessed?! I just don’t know! We do not have the words. Plus, we have had so many precious gifts given to our family. Thoughtful, heartfelt gifts that have provided us with things like hot chocolate on frigid days (Starbucks gift cards), fully bellies (snacks galore in the hospital), warmth (handmade blankets for our boys), distractions (toys, books, games, and entertainment), discounts (on meals and more), and tokens of support and love (a wall hanging made by a new, creative friend in honor of our “year of hope”). Until I can get around to each and every one of you…..please accept this faulty, mass, cyber thank you for all that y’all have done to support, encourage, bless, and love on us during this time! It will never be forgotten! God bless you ALL!
Let me start tonight’s update with a huge THANK YOU! I know I keep saying it but I will just never be able to say it enough! I seriously cannot keep up right now and what a blessing it is to have this “problem!” Between texts, emails, FB comments and messages, letters, cards, the most thoughtful and helpful gifts, calls, and such…..we have been so inundated! Some even by perfect strangers! To say you have blessed our socks off is such an incredible understatement! Please forgive us for our tardiness in proper thank you’s and just know that our cup is seriously running over! We feel the love and WE ARE SO GRATEFUL!
That being said……I will tell you about today. This morning at 9 a.m., we arrived at the hospital for Cannon’s final test of the visit. The Gastric Emptying Study. We were a bit worried he might get sick as he looked really weak and nauseous. So, we decided not to perform his flush today after calling to speak with a nurse. We wanted so badly for this test to be successful and didn’t want to open the floodgates so to speak. As he gets sick during his flush lately about 60-70% of the time. Upon arrival, Cannon had to eat a meal that contained radioactive material. They prefer that he eat 2 scrambled eggs and 2 pieces of toast with jam…..as well as to drink a small bottle of water in a 15 minute time period. Cannon absolutely hates scrambled eggs. They make him gag. But we were able to motivate him by reminding him that this would help the doctor better understand why his tummy hurts. He was able to eat 1 egg and one piece of gluten free toast with jam and drink 2/3 of the bottle of water. It wasn’t perfect but it was far better than what he had been able to get down in the 2 previous tests. He immediately had to jump up on the table…..lying still for several minutes to have the first of 3 nuclear scans. Afterwards, we were free to roam about for a while and come back in 2 hours for the next scan. Our home hospital does more frequent scans during their Gastric Emptying Studies but I guess there is variability between hospitals. We decided to hang out in the Columbus Blue Jackets Family Resource Center while we waited. It is an awesome area of the hospital donated by their NHL hockey team. Cannon enjoyed playing in a play area there while we relaxed in a living area and went over our questions for the doctor afterwards. 2 hours came and went……and we returned for the 2nd scan. He was a bit wiggly on this one but all was okay….the tech said. This time, we roamed a bit. We went down to the Emergency Area where there is a cool aquarium, visited the gift shop, observed a lot of the unique decor this hospital has to offer, and ultimately ended up in the Chapel. We spent some time there just praying together and it was quite precious. My nerves were creeping in and I wanted to squash them! We prayed for many things……the doctor, the tech performing the procedure, the potential infection site, accurate results, and that there would be resolution at the end of all this. We placed this journey in God’s mighty hands and now we wait. We are in a holding pattern.
We had been told to go to the G.I. Clinic 30 minutes after the final test was complete……to get all the results and the doc’s recommendations. I was nervous about this as I wondered if it gave him enough time to properly review everything. Also, he has been so busy and just popping in and out…..never truly finishing a thought or conversation. I thought if we just arrived whenever…. without a scheduled appointment……we would definitely get the same him. After sitting in the clinic for a little bit, one of his nurses came out and told us that the doc wanted more time to review his results. Could we come back tomorrow at 9 a.m.? I was so thankful. All I had prayed for the night before and day of was to have some good time with him and for him to be focused and prepared for us. We were so thankful! So, we came back to RMHC for the night and will head back to the hospital in the morning. Who am I kidding? Today. Sorry y’all…..I fell asleep trying to write this post last night.
Specific prayer requests for today…..
1) A good block of time with the doctor today. No matter the results…..we have a few important questions and we need time to properly go through them.
2) Continued prayers for the doctor to have real empathy towards Cannon. To truly take his time, consider all of his diagnoses, and come up with a comprehensive plan of attack to make his life not just better but much healthier.
3) If he feels that more testing is required…..that we will be able to change plane tickets, adjust Mark’s work schedule, and that my parents can spare the time.
4) There is no sign yet of infection from the mishap in surgery. We pray that continues. It could take up to a week to show up.
Thank you again for everything our beloved friends. I am so very hopeful that the next time I am updating y’all……it will be with tons of new, clear ideas and solutions to the issues that plague our sweet Cannon. GOD BLESS Y’ALL!
We were taken down to a surgery waiting area early this morning to talk with and sign consent forms for both Interventional Radiology and Anesthesia. I felt ok about each meeting afterwards but wasn’t too sure they were taking me totally seriously about a couple of things. We were urging Anesthesia to give Cannon something on the tail end of the procedure to help him come out of it slowly and easily. The alternative can be a quick, agitated, and combative response were he is extremely upset and can possibly hurt himself or others. Our home hospital does this every time without issue. But apparently this didn’t happen today. The other thing we begged was that as soon as they took Cannon from Surgery to Recovery and BEFORE he began to wake up…..to come get us. It allows us to get his movie set up, along with all the things that make him comfortable and to be there to help hold him if things get bad. I mean, what 8 year old wants to wake up from surgery and see a bunch of strangers? You want your mom and dad or it’s scary! Especially with Autism. Well, this didn’t happen either. I was told it was hospital procedure that no one comes back to see the patient before they wake. I get it. It just know that it could have helped the situation and it stinks.
So, today he was having all the Manometry tests (Antroduodenal, Colonic, and Anal). He was having 3 sets of catheters inserted in these various places that would be left inside to measure contractions of these areas. The first would go down his throat, past the stomach, into the top of his small intestines…..I believe. The 2nd would cause his Chait Button to need to be removed and 2 tubes to go in in it’s place. The 3rd would go “where the sun don’t shine” and do its measurements there. The 1st and last were placed successfully.
I want to press “pause” for a moment and thank all who prayed for Cannon to get anesthesia FIRST today…..before his I.V. This DID happen and was actually done beautifully and with lightning speed. It could not have gone better. While waiting for anesthesia to get set up, Cannon began to “script” about a favorite topic…..Charlie Brown and the Peanuts characters. The Child Life Specialist heard this and produced a Peanuts coloring book for him to flip through. And some other guy in the procedure whipped out his cell phone and pulled up a Peanuts episode somehow! He loved it and was totally distracted when it came time to put him under. I sat on the table with Cannon in my lap, holding his arms. An anesthesiologist came in behind me and put the mask over his face. It was so quick and he fought so little. He just watched Charlie Brown on the phone and I even heard him say something about Sally calling Linus her “Sweet Baboo” through the mask. Silly boy! We were off to a great start!
We had been told that the procedure would take about 30 minutes before he would head to Recovery. But after an hour and some change, I was starting to wonder what was up. Then, someone came out of the OR and got us. We had been told a nurse would come out of a different door and take us to a totally different area when all was said and done. So, I was alarmed from the start. Also, the doc usually comes into the Waiting Area and tells you how it went before the nurse comes. But no doctor….just the nurse who came from the OR and took us to a small room with just a table and a couple of chairs and asked us to wait there for the doctor. I cannot tell you how quickly my heart began to race. I just put my head down and began praying with all my might. Eventually, the Interventional Radiologist came and started explaining a few things. The NJ tube and anal tube had gone in well and they had already performed the manometry test they needed on the lower part of his body. But, there was a problem with the placement of the colonic catheter. They successfully removed his Chait Button from his abdomen and replaced it with a slightly larger tube than the Chait in this pathway. This tube contained the catheter. He was also asked to place a much smaller tube next to that one and in the same pathway. This tube would allow those performing the test to administer food directly to his colon and move the test along. When he placed the first tube, he noted it was a tight squeeze. When he went to place the second tube, it was really tight but he continued anyway. He struggled to get it in and at one point decided to inject contrast to see if it was getting where it was supposed to. Once he did that, he can watch a screen that shows him Cannon’s insides and see where the contrast went. Well, the contrast didn’t go where it was supposed to which led him to believe that the second tube nicked or perforated the Chait’s pathway and it had gone in there. He said he wasn’t 100% positive that was what happened but he is very suspicious. So, Cannon could develop an infection. We have to start watching for those signs and get him on meds immediately if that happens. The IR doc would have preferred to begin them immediately as a precaution but the Head of G.I. has decided to hold off and wait for signs of infection. I felt so bad for the IR doc. He was visibly upset about this. He noted that he does this procedure so often and this very, very rarely happens. I am not upset. Things happen. It stinks but of all the things that they could have taken us to that little room for…….I think I will take this over some of the alternatives. Gotta keep it positive and keep moving forward.
We went back to the Waiting Area and waited for the nurse to come take us to Cannon. When she did, he was already awake. Grrrrr! I was not exactly happy. And sure enough…..he came out of it wildly. No med was given by anesthesia for easy waking and we weren’t there to hold him. AND he pulled the NJ tube out of his nose immediately. I will say I was upset about this one. When you advocate and advocate and advocate and tell people that these are the kinds of things that happen…..it’s really frustrating when it is disregarded! We came here to find out about his stomach. And this tube was the one that would have provided that info. And he was now awake from anesthesia. You cannot have anesthesia twice in one day. This particular tube has to be placed under anesthesia. It was a done deal. No test for that part of his body. I almost had to leave the room for a minute and cry. But I couldn’t….Cannon needed me. And didn’t need to see me upset. The G.I. doctor came in later and said that we will wait for the result of the test tomorrow. If it shows a problem with his stomach, he will consider keeping us here longer to re-do that part of the test.
We continued with the Colonic Manometry test for several hours. They were injecting sterile water through the catheters to measure the contractions and his body’s responses. During this time, we had to fill out some paperwork from the Psychiatrist that is apart of the Motility Team. He came in for a bit and spoke with us for a few minutes but was called away and never returned. I was disappointed that we couldn’t chat with him more. There were 3 nurses in the room with us for most of the day and they just fell in love with our angel. They doted over him…..talking and playing with him as much as possible to help keep him comfortable. One of the nurses even went out and brought him a snowball to play with. He had fun feeling how cold it was and touching Daddy’s face with his cold hand. When he said he wanted to build a snowman….she went out and got a cupful of snow. Then, the nurses began searching the room for “buttons (some red caps)”, “a hat (a medicine cup)”, and “arms (a tongue depressor broken in half.” It was precious! They were too sweet. One nurse, also, let Cannon squirt Daddy with a syringe of water. He loved that! I am so thankful for how incredible these precious women were with our sweet boy.
After the test was complete, we had to go back to surgery to remove the catheters and re-place his Chait Button. But, as I mentioned yesterday…..we hoped to have them REPLACE the Chait so we didn’t have to put him through another procedure when we returned home. (This button has to be replaced every 9-12 months and he is due for that change.) Since he could not have more anesthesia, this was going to be a bear. We had never even entertained the thought of attempting this back home with nothing. I immediately hit up my Facebook friends with an urgent prayer request and prayed under my breath like crazy. When I saw that there were only going to be 3 other people present, I admit I really worried. My husband was our rock today, though. Confident that Cannon could do it and that this was the safest and quickest way to get it done. I leaned on that and trusted his leadership. Sure enough…..CANNON DID IT! Our sweet boy did it! He got through the difficult removal of the crazy, long catheter (like this thing was SERIOUSLY LONG) and placement of a shiny new Chait Button like a CHAMP! He fought minimally and was so insanely brave! I was just staring at him in total awe! This was the power of prayer at work people! There is no other explanation! I watched God work in that OR today! My child is never that calm! To those who prayed……THANK YOU SO MUCH! You truly made a huge difference in my baby’s life today! I just cannot express my gratitude enough!
I gotta wrap this up! In short, we were unexpectedly discharged after a little while in his room. We are back at the Ronald McDonald House for the night. Head back to Nationwide in the a.m. for the final test. The dreaded Gastric Emptying study. He will have to eat a meal that contains scrambled eggs with radioactive material in them. He will then have a series of x-rays at various time intervals there after to watch them proceed through his body. To see how long it takes, if it gets hung up in a particular area for too long, etc. It will go from about 9 – 1:30 tomorrow. Afterwards, we will head over to the clinic and meet with the doctor for ALL the test results and recommendations.
Specific prayer requests for tomorrow…..
1) A complete, clear, accurate, and definitive result on the Gastric Emptying test. This will be our 3rd and we need this one to be a good one. The first couldn’t be completed because he kept throwing up. (He can’t take his reflux medicine the morning of and that day…..his body couldn’t recover.) The second, we feel was dumbed down too much. His doc was so concerned with just getting the test completed that he put him on clear liquids for 2 days prior. So, he virtually had nothing in his system and the meal passed right through. We want to know how his body reacts to FOOD. Because we want him to be able to eat FOOD all the time from here on out. He has eaten 2 meals and a snack since coming off clears earlier today. We hope this is enough to get an accurate picture. And that he will not throw up at all before or during the procedure!
2) It is midnight and Cannon is still awake. Something is bothering him. I am praying he is not developing an infection from the mishap in the OR this morning. Prayers for no infection would be so great!
3) Please pray that the test results will show WHY Cannon is hurting. We cannot go home with nothing. We have waited too long and come too far. Please pray that no matter what they show…..that this doc will have compassion for him and try to come up with solutions to give him a better quality of life. The Psychiatrist today asked us why we were here. My response was that all we have done for the last 5 years is watch Cannon suffer and deteriorate. We seek a better life for him. One that is relatively pain free, where he can eat food, and be a happy, healthy little boy. That is it….plain and simple. This is the big one! The biggest prayer request of them all. This meeting with this doc…..tomorrow……has the potential to change the course of Cannon’s life for the better……finally! Our knees are raw over this one. We need this. Cannon needs this.
Good night friends! If you have read this far…..you are a saint. Thank you for praying us through today’s drama. Hope will lead us on!
This is going to be a bit short and sweet. For me. I am so tired and not even sure if this is saving as the internet here has been spotty.
We arrived at Nationwide this morning for our 8 a.m. check-in. All went well getting paperwork done and finding our way up to our room. We set these next to his bed to remind him how strong he is.
Orders for his Go Lytely solution were already in upon arrival. The first praise of the day was that I WAS able to get the docs to agree to put the solution through the Chait Button in his abdomen. NO NG TUBE! Such a relief! Upon sharing some background info with our nurse…..she decided to go ask the docs if we were able to keep him drinking consistently…..did he really NEED an I.V.? They agreed to hold off as long as he drank and kept it down! AND HE DID! This was huge! And another fantastic answer to prayer! The Fellow (who is an Attending in his own right…..just doing a rotation in Motility) came in to go over Cannon’s history. Mark and I had gone through all my notes from the last year the previous night and had a really good timeline down as well as a good list of current symptoms. I felt so very good after talking with the Fellow. He was a great listener and really seemed to get Cannon and be so very caring. All the while, the solution was running, running, running through my boy. And no “results” were being produced. It took several hours before he even produced one diaper’s worth. And then his Chait Button began leaking at an alarming rate. So, they disconnected him from the Go Lytely and gave him a break for a bit. Eventually deciding we should do a cleanse with the medication we do for at home, daily clean outs on top of what they had already done…… but with their equipment. So, the nurse got everything ready and ran that through his Chait as well. But because it was going through an I.V. bag, tubing, and pump…..It took much longer. About 10 minutes when it normally takes us less than one to put it in via catheter syringes. The “results” began and remained fairly constant for a while. When they seemed to be done…..we took a walk around the floor and ended up in the playroom.
We had been there about 5 minutes, when he had some more “results” and we had to return to his room. A sweet volunteer stopped by right after we got him cleaned up and offered to play a game with him. He played a sweet Daniel Tiger game with her and was talking back to her well.
The art cart stopped over and left some paint and a wooden whale carving to paint. He enjoyed this and then went to sleep.
There were some decent downs to this day. From sun up to sun down, Cannon was incredibly, incredibly anxious. I am not sure a minute went by all day that he wasn’t begging us to take him home or back to the RMHC. He cried “rescue me”, “save me”, “help me please mommy.” All the things that break my heart and are accompanied by sad, sad eyes and crocodile tears. I felt like we were just getting him through this minute without completely losing it….. and then the next….. and the next. It was a marathon…..today was. And then there was our initial meeting with a very important doc. After speaking with the Fellow, I was so encouraged. This place is going to really go to bat for him. Really pool all their resources and get this thing figured out once and for all. After 5 long years…..we are going to put this pain and lethargy to bed. BUT……let’s just say I was caught quite off guard by the next doc we came into contact with. I would prefer not to get into it. I was so stunned and dumbfounded by him…..his questions…..his take on what might be going on with Cannon. Completely dumbfounded. And so, so disappointed. We have waited almost a year and looked so forward to meeting HIM. At one point during the conversation, I even feared he might pull the plug on the whole thing. It was…..I don’t know……Just not even in the ballpark of my expectations. I am trying, in my heart, to just chalk this up to poor beside manner. It really wasn’t that but I am trying to tell myself that so I can remain positive. It is time to trust and let God work. Let the results of the tests speak for themselves……and then go from there.
Tomorrow morning at 8 a.m. the fun really begins. They will take him down to Interventional Radiology and put him to sleep. He will have several catheters placed in his colon and stomach. These catheters will stay in for most of the day and they will measure and give data based on their contractions. They are looking to see if there is a weak link, if his stomach is working together well or not at all. Tomorrow evening, as he is going to sleep……they will place another catheter…..let’s just say “where the sun don’t shine” and measure those contractions. All this information, per my understanding, will confirm or deny his Gastroparesis diagnosis and/or show if there is nerve damage. And they say this will be uncomfortable and he will have to tolerate it. Wanna hear a 3rd praise of the day?! Cannon’s Chait Button has to be removed tomorrow to place one of the catheters. And I jokingly…..but not really jokingly…..mentioned that they could just replace (that’s “replace” not “re-place”) it when they went to put it back in. It has to be replaced yearly and he is due for it in the next month or so. They think that they CAN! This would save Cannon from having to go through another surgery when we get home! And us the drama of figuring out where to do it and which doctor to do it back home. You may remember if you’ve been following our journey that this surgery was botched last year and had to be re-done later. We do not want a repeat performance and are so grateful that they just might do it here. Where this procedure is done VERY regularly!
Specific Prayer Requests of the Day……
1) That they will agree to NOT put the I.V. in first in the morning. That anesthesia will put him under and THEN they will place the I.V. This saves him so much anxiety, fear, and discomfort.
2) That he can tolerate the discomfort of the contracting catheters and that the results will be accurate and clear.
3) That they WILL replace his Chait Button tomorrow when they remove the catheters.
4) That the doctor’s heart will soften towards Cannon and that he will use every ounce of his ability to figure out what is causing his pain and lethargy.
That’s all for tonight folks! I’m wiped! I sure hope this posts! WE LOVE YOU ALL!!!! YOU BLESS US BEYOND MY CAPACITY FOR WORDS WITH ALL THE SUPPORT!
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