Drama, Drama, Drama

Today was a drama filled one….to say the least.

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.

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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!

Ups and Downs

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.

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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.

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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.

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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.

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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!

It’s Finally Happening! We are in OHIO!

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……

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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.

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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……

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…..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.

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But woke up in the transfer from wheelchair to plane. He truly tried but couldn’t get back to sleep.

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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.

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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!

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GOD BLESS YOU ALL!!!!!!!!!!!  WE LOVE YOU!!!!!!!!  HOPE WILL LEAD US ON!!!!!!!

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“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

 

Fall Is In The Air!

Things have been a bit heavy lately!  So, let’s balance it out with some precious pics of our little munchkins in fall……shall we?!  These beautiful memories were snapped by my dear friend Karina at Beagley Photography.  Enjoy!

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Waiting Is Not Easy…….

It has been a while.  A VERY long while.  I actually can’t quite believe I have let blogging go this long but I did have my reasons.

It has been an insane past few months since I last updated y’all.  When I let you know about Cannon’s new diagnosis.  Since that time, we have been researching up a storm, calling and meeting with all of Cannon’s current doctors, getting lots of advice from parents, friends, and other medical professionals, seeking out potential new doctors, talking with the insurance company, having long, detailed conversations with our nurse case worker through our insurance company, and spending a TON of time on our knees trying to figure out what is the best, next move for Cannon.  See, we tried to come up with a new regiment that would ease Cannon’s Gastroparesis.  The harsh reality is that there is not much that can be done.  It is a chronic, painful, life-altering, life-long condition with very few treatment options.  We tried a couple of different medications.  Even tried to get a couple more that are only available in Canada.  Nothing worked.  We tried some other things like smaller, more frequent meals and a liquid diet.  Nothing helped for more than a few days.  He is just so beyond miserable.  It has been a heartbreaking, heartbreaking time in our lives.  The hardest part has been the waiting.  Long, LONG periods of waiting to get calls back and action from one of his doctors.  And when we have gotten them……we were told there was nothing more that could be done for him.  Well, that is just plain unacceptable.  HE IS 7 YEARS OLD!  We can’t just give up on any kind of quality of life for our 7 year old!  So, as previously mentioned…….I researched!  And it didn’t take long to figure out the direction I wanted to go next.

After Mark and I discussed what seemed like the best option, I made the first phone call to Nationwide Children’s Hospital’s Pediatric Motility Center in late May.  A Dr. Carlo DiLorenzo seemed to be the go-to specialist in this field and is located at this hospital in Columbus, Ohio.  You can have a look here…..if you so desire……..

http://www.nationwidechildrens.org/motility-center

I was informed that I needed a referral and to have all of Cannon’s records transferred to them.  Then, their team of docs would sit down with all of this information and decide……..

a) if they can help him at all

b) if they need additional testing to determine treatment

c) if he is a candidate for surgery or one of their other cutting edge procedures

The first major hurdle to jump through was getting that referral.  It seemed like an easy enough task and I don’t want to get into it too much online but lets just say a lot of things that had nothing to do with Cannon and his needs got in the way. Fortunately, we have the world’s greatest pediatrician who made calls and got things going after we waited months (yes…..MONTHS) to get this simple step done.  There was soooooo much more that went on behind the scenes that I’d rather keep private.  And these experiences were the main reason for my blog silence.  Anyhow, when that was FINALLY done, we got a call as to what day his case would be evaluated.  We hit our knees big time and asked friends to pray with us as well!  I was told it would be done on a Friday morning and would hear news that afternoon.  No call.  It took one incredibly, long anxious week before we heard the news we were so longing to hear!  YES!  THEY SAID YES!!!!!!!!  They would take on Cannon’s case!  It was the most wonderful news!  We could not have been more thankful!

But there is a but.  BUT now, we get put on a waiting list.  We are “scheduled to be scheduled” as she put it.  They will call us one month in advance to get everything scheduled to bring Cannon out from Arizona to Ohio for testing.  Currently, the Nationwide team has 5 tests planned.  4 new tests and one repeat test of one done previously here.  This facility is THE place to go for this pediatric condition.  And they are inundated with cases.  So, we have to wait our turn.  No matter how bad off he is.  I was a little sad.  I had hoped that maybe because they knew we were struggling to get the referral for those months…..that maybe that time would count as our waiting period and we might jump to the top of the list.  But, no such luck.  3-4 months was what we were told one month ago.

So, how can I possibly explain to you how tough it is to wait.  My child’s sparkle, his joy, his light is slipping away.

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He spends most of his time on the couch…..lethargic and pathetic.  And when he isn’t, he runs around like the Tasmanian Devil and I just know that he is trying to deal with the fire that is blazing inside of him in his own sensory way.  There are other times when he is still and calm but his cheeks and ears will get crazy red for no reason.  He has also had periods of several days at a time where his face and body will get incredibly warm but his limbs will be cold.  His pediatrician thinks this is a response to pain.  Sigh.

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He is beginning to show signs of depression and also anger.  Which is almost exclusively directed towards me.  But, I can’t blame him.  Mommies are supposed to fix things.  And I haven’t found a way to.  He has developed some behavior that is similar to a tic. Yelling mean phrases at me in repetitive way with a frantic, anxious look on his face.  We are going to see his neurologist this week about that.  He sleeps often.  Like really often.

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Throws up a lot.  He is on a mostly liquid diet although we do throw in some food once in a while just to give him something enjoyable.  He throws up a lot less when on liquids.  But it doesn’t seem to help with the nausea or pain.  On average, he will have to leave the table to lie down 3-6 times during each meal.  And will also need to lie back down for a while afterward.  We have been to the ER when things have gotten really bad.  But there isn’t much anyone can do for him.

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He has told me on several occasions that he is “dying.”  When I ask him why….he says “because I’m sick.”  The bottom line is that he has no quality of life right now and is very aware of that fact.   He is not even close to thriving…….he is merely surviving.  And MAN, that is one hard thing to watch!  Sunday, after an incredibly tough morning, I looked back on our drive to church.  This face made me just want to shatter into a million pieces.

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But I can’t.  I give myself brief periods in which to get my emotions out.  But there has to be a time to shut it down.

He needs me to remind him of scriptures like these……

“Wait on the Lord.  Be courageous, and He will strengthen your heart.  Wait on the Lord!”  – Psalm 27:14

“I wait for the Lord, my whole being waits and in His word I put my hope.  I wait for the Lord more than watchmen wait for the morning.” – Psalm 130:5-6

“But they that wait upon the Lord shall renew their strength.  They shall mount up with wings as eagles, they shall walk and not grow weary, they shall walk and not be faint.”  – Isaiah 40:31

“I wait patiently for the Lord and He inclined to me and heard my cry.”  – Psalm 40:1

“Therefore, I will look unto the Lord.  I will wait for the God of my salvation.”  – Micah 7:7

“The Lord is wonderfully good to those who wait for Him.”  – Lamentations 3:25

“The Lord upholds all those who fall and lifts up all who are bowed down.”  – Psalm 145:14

And a few quotes like these…..

“To us, waiting is wasting.  To God, waiting is working.”  – Louie Giglio

“It is wise to wait upon the Lord in order to receive his clear direction for our lives, to keep in step with His timing, to prepare us for what He wants to give us in life, and to sift our motives.” – Charles Stanley

And to guide him through the teachings of great men of God like Dr. Stanley.  Who also tells us HOW to wait here…….

http://www.intouch.org/you/article-archive/content?topic=how_should_i_wait_upon_the_lord_article#.VFAst-dGy0B

Long story short……we are in rough shape.  Our hearts are heavy as we watch our sweet, loving child be reduced to an angry, even more distant, lost little one.  We could use your prayers!!!!!!  And we definitely need to get to Ohio sooner rather than later.  But God is good…..all the time!  We are still standing and we will get our sweet baby through this!  

Y’all know I use music to uplift and inspire me.  Here is a current favorite song of mine.  One that I am absolutely and completely clinging to right now………Let it minister to your heart today!  Love you ALL!

https://www.youtube.com/watch?v=Bb7TSGptd3Y

 

 

Not The Best News……….

Warning: There is a photo towards the end of this post that may be difficult to see or hard to look at if you are squeamish.

What a crazy last few days it has been! I’m not even sure where to begin but here goes!

Last Friday, I took Cannon in for his surgery. Our ride to the hospital always includes a social story. These are stories that gently explains to him exactly what is going to happen to him. To aide in coping. We do it every time he has a surgery or procedure and it helps tremendously as he seems to understand the written word better than the spoken. I was running late but managed to scribble this down as I ran out the door……..

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The first part of the surgery was to be the endoscopy. Cannon’s G.I. doctor would do an Upper and a Lower scope to see if he could find any issues or sources of his abdominal pain.  There would also be biopsies taken from all over, as well as blood  drawn for various tests. He has had bouts of extreme lethargy, paleness, etc. and we were so ready to get to the bottom of things. After some time, the doctor came out shaking his head. He asked me when and what Cannon had eaten last. I grabbed my notebook. For as long as Cannon has struggled with G.I. issues….I have been keeping these notebooks. Notebooks that eventually get filed into large binders and stored. I record everything that goes in (food wise), everything that comes out (you get the picture), as well as behavior notes….doctor’s appointments, etc. I have to. I can’t remember anything anymore. So tired! Anyhow, my notebook told me exactly what he had eaten for dinner the night before and what time. He confirmed with me that he had had nothing after midnight. Nothing….yes. A sip of water to take meds and that is it. He shook his head some more and said he found the problem. Cannon’s stomach was completely full 14 hours after he had last eaten. So full he couldn’t even get in there. He said he was in shock. Had taken pictures. He just couldn’t believe how full it was. He had had to pump his stomach. He called this disorder Delayed Gastric Emptying or Gastroparesis. Partial paralysis of the stomach. This, he believed, was the source of all the pain he has been having. I really thought it was going to be scar tissue buildup on his button but no…..this was much worse news. This is a life long, chronic, and painful problem. And it is the cause of the severe bacterial overgrowth that we found in Cannon back in November. A problem so bad….it had taken 4 months (when it should have only taken 2 weeks) of high powered, twice a day antibiotics to get under control. And he still requires a maintenance dose every other day to keep the issue at bay. Stomach contents hanging out for that long and basically stewing….causes the bacteria to build. We could not figure out why it was doing this as we flush his colon daily….but now we know. My poor buddy! The worst part to me is that with Cannon’s limited language…..he has been suffering for so long with this. God only knows how long! And he didn’t have the capability to tell us about it. So….long story short…..his stomach fills up….it isn’t strong enough to break down the food….so it just sits there. Until it is so full and more comes food comes along….pushing it on its way. The bacteria has formed in the meantime. Now it heads into a colon that also doesn’t function. It sits and waits for our daily flush to move it on out. Heartbreaking! Disgusting! My poor buddy!

The only good news on the G.I. front is that all the biopsies and labs came back normal. Thank goodness! No more surprises. The doctor is telling us that right now our only course of treatment is to put him on another antibiotic long term to try to get his stomach to respond and move. The chance of it working is poor. And the concept of him being on yet another antibiotic indefinitely is not so great. But as the nurse pointed out…..the risks are outweighed by his need for the medicine. So, therefore, the doctor feels that this is where we begin. I am going to fill the prescription for now but I am not sold on this idea. Especially as a long term solution. I am going to look into other methods and courses of treatment. This isn’t a super common problem and there are few specialists who are experts on it (more good news) so we will see how far I get. So, that was part 1 of surgery day. Phew! And I thought that was enough.

Part 2 was to be the exchanging of his Chait Button. The button placed in his abdomen that essentially does the job his weak colon cannot. This is the part that always makes me super nervous. As mentioned in previous posts, it can be difficult to remove without issue as well as to re-insert a new device due to the spiral nature of the tube below the skin. That morning, the Interventional Radiologist reassured me that all would be fine and promised to look for scar tissue buildup even though he was convinced…..it wasn’t there. I waited some more after signing away my consent and was surprised how quickly the doc returned to tell me the procedure was over. Like really surprised. He seemed quite proud to tell that the re-insertion phase only took 30 seconds. Which actually concerned me far more than impressed me. Call it my “mom gut” or whatever…..but it just did. I was then taken to the PACU (Pediatric Acute Care Unit) to wait for my sweetheart to wake up. While doing so, I always work with the Anesthesiologist and nurse to ensure the best wake up possible. The Anesthesiologist gives him a little something to ease his transition from asleep to alert. And stays close by incase we have a problem. We have had some horrific wakes in the past. I also try to have a movie he likes ready to watch, his beloved Curious George monkey ready to snuggle, iPad charged up and ready to go, as well as other distractions at arms reach.  I have also been known to bribe him with the possibility of snacks or milk if he is calm. I also ask the nurse to remove any un-necessary medical tubes, monitors,etc…..because he is so sensitive and can get super upset about those being on his body. We usually remove the sticky heart monitor pads from his chest, IV, and pulse ox monitors if possible. I also wanted to remove the abdominal binder or band that he wears to re-dress the site of his button before he woke. We have a particular way of doing this. We cut a slit in a gauze pad and slide it around the button. This catches any ooze. Place another sterile dressing pad with adhesive tabs over the top of that. And add a layer of medical netting over the top. This keeps the velcro on his band from scratching his back. Finally, he wears the band we had invented by a local prosthetics/orthotics company as a final layer of protection. Here is what that looks like…..

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So, I pulled his band off to re-dress and to my complete and total surprise…..as soon as I took the compression off…..the underlying tube began to move out of his body! I jumped back and told the nurse this was NOT normal. The button should be flush with the skin! He took his finger and pushed it back in and told me it was fine. I protested a bit but eventually re-dressed the area and put his band back on. He was beginning to wake up. This was a VERY good wake-up compared to some in the past. They used a different type of Anesthesia than has been used on Cannon before and this proved to be a good choice. Although it was slightly disturbing as his body made some rather strange contortions and such. The nurse was pleased and allowed him to have some milk fairly soon after wake-up. Followed shortly thereafter by a snack. When we dressed him to go home…..he delayed discharge a bit by throwing up everywhere. I mean everywhere. Yes, even in my hair. But he laid back and rested for a while and soon enough……we were on our way home. To heal and wait to hear back about the biopsies and labs.

At home, he laid on the couch, watched a movie, read books, and just rested. He looked pretty darn good considering and I was encouraged. Until I took the band off that night. THE SAME THING HAPPENED THAT HAD IN RECOVERY! The tube began pushing its way out. I actually got a ruler and measured. It was 3/4 inch out! Cannon was quite freaked out by this.  He cried and kept yelling at me to push it back in.  The next morning, when I went to flush his button, it came out 1 inch! And it did the same when I changed the dressing that night. I called and talked to the G.I. doctor on call Sunday morning because I was obviously very concerned. He said the Interventional Radiologist had to deal with it since they had been the one to put it in. And, of course, they aren’t in on the weekends.

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So, Monday morning, with the tube more than 1 1/4 inches now out of his body…..I finally got someone on the phone. They said to keep him from eating and drinking and bring him to the hospital. When we got there and through the check in process…..someone from I.R. came out and told us that they would definitely get to us but it would be about 4 hours. Well, that would have been nice to know before I left home. Sigh. So, I had to keep starving him, distracting him with books and electronics, and carrying him around the hospital (as he had no energy to walk) to try and keep his mind off things. Finally, they brought us back and the resident began discussing things with me. And he was talking about some completely different tube! Obviously he hadn’t read Cannon’s chart. He didn’t even know what the Chait Button was or did. I asked for the Attending. When she came out, I removed the dressing and she saw the problem. She began talking about getting an I.V. in him and starting conscious sedation. I quickly reminded them that this doesn’t settle Cannon enough and he has always required anesthesia. They look dumbfounded and left the room. I wanted to say…..Please someone look at his chart….it’s all there!  When they returned they informed me that not only did they not have the size button needed to fix Cannon’s problem…..they also didn’t have an Anesthesiologist available to help with the procedure. It was at this time, they admitted that the tube that had been put in on Friday was 4 cm too long. He needed the same size he had had in in the first place. Which means they did not have both sizes available at the time of his surgery. I questioned this but as this was not the same Interventional Radiologist….she just shrugged. I wasn’t happy. I expressed concern as it seemed to be coming out more and more each day.  They said the coils of the tube should hold it from here on out.  What about infection….I wondered?  It’s going in and out whenever the compression is off.  They said not to worry.  Now, we had to leave. He’s been waiting all day, un-necessarily, to eat.  And no resolution.   We were told the new button would have to be over-nighted in and Anesthesia would be requested for Wednesday morning. So, we went home….again.

Wednesday morning, we were scheduled for a 9 a.m. procedure but got bumped back to noon.  Another long period of fasting for my buddy.  But all went smoothly this go round.  The right size tube was inserted (the same size he had had prior to the surgery) and there were no problems.  He woke even better than before and we headed home with no nausea issues.

I admit it.  I struggled with being quite angry at the doctor.  Had he been in too big a hurry to notice that the button didn’t fit?  Or did he notice, cram it back in there, and put compression on it.  Can you imagine how that felt to my Cannon……keeping in mind that his sensory issues heighten all of his bodily sensations.  I had to spend a lot of time praying for this man.  For his work ethic, empathy level, future patients, etc.  I am not perfect.  And I don’t know if I would say I am over this……but I am on that road.  It’s over.  Cannon’s ok now.  And THAT is what matters.  (But you can bet I sent the previous pic to our G.I. doc’s email address…..as he is the President of the hospital as well.)  We do love our hospital.  This was an unfortunate incident.

Back to the Gastroparesis….the new diagnosis.  I am so insanely sad and disappointed to learn about this new challenge.  To say the least.  There have been tears.  Quite a few if I am being honest.  I hate it!  I hate it so much!  But I have to leave it at that and focus on trusting God in this process. I cannot give Satan a foothold…..a way into my thoughts and my relationship with my God.  A dear friend shared Psalm 143 with me.  Here are a few select verses that I am clinging to.

“O Lord, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief.  I spread out my hands to you; my soul thirsts for you like a parched land.  Let the morning bring me word of your unfailing love, for I have put my trust in you.  Show me the way I should go, for to you I lift up my soul.  Teach me to do your will, for you are my God; may your good spirit lead me on level ground.”  

Psalms 143:1, 4, 6, 8, 10  

You may have noticed that the blog has a new song playing when you come visit.  I think it is perfect to share with you know.  Our prayer is that each day…….we will remember and focus on these words and the concept that God is sovereign (the greatest in status or authority or power).  And He is sovereign over us.  He has got this. It’s no surprise to him.  I have to just hang in there and keep doing my best to never stop looking for more treatment options and focusing on doing everything I can to help Cannon avoid pain.  God bless you all!  We will check in again soon!

“Sovereign Over Us”

There is strength within the sorrow
There is beauty in our tears
And You meet us in our mourning
With a love that casts out fear
You are working in our waiting
You’re sanctifying us
When beyond our understanding
You’re teaching us to trust

Your plans are still to prosper
You have not forgotten us
You’re with us in the fire and the flood
You’re faithful forever
Perfect in love
You are sovereign over us

You are wisdom unimagined
Who could understand Your ways
Reigning high above the Heavens
Reaching down in endless grace
You’re the lifter of the lowly
Compassionate and kind
You surround and You uphold me
And Your promises are my delight

Your plans are still to prosper
You have not forgotten us
You’re with us in the fire and the flood
You’re faithful forever
Perfect in love
You are sovereign over us
[x2]

Even what the enemy means for evil
You turn it for our good
You turn it for our good and for Your glory
Even in the valley, You are faithful
You’re working for our good
You’re working for our good and for Your glory
[x2]

Your plans are still to prosper
You have not forgotten us
You’re with us in the fire and the flood
You’re faithful forever
Perfect in love
You are sovereign over us
[x2]

You’re faithful forever
Perfect in love
You are sovereign over us

* Feel free to refresh the page and listen again!  Or watch the video!  Let this beautiful song minister to your heart! *

 

 

Team Cannon 2014

In the latter part of April, our family participated in the Piece the Puzzle Autism Walk/Run/ and Resource Fair. We had such a great time with friends and family on that incredibly blustery day! Here are some pics to enjoy…….

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(We grew by 3 more friends after this pic.)

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Afterwards, we ate snacks, played, and had a great time together!

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Thank you so much to Karli, Dawn, Ricky, Jennifer, Laura, Cole, Carly, Zane, Luke, Gage, Jace, Yvette, and Grandma for joining us and making this day an extra special day for our Cannon! And for helping to raise awareness for and provide support to those individuals and families who daily live with this epidemic developmental disorder. God bless you! We love each of you so much!

“A friend is one that knows you as you are, understands where you have been, accepts what you have become, and still, gently allows you to grow.” – William Shakespeare

Tomorrow is Surgery Day…..

Tomorrow is almost here and it is a big day. Cannon’s Chait Button is due for replacement and it is definitely time. It opens too easily. (The water in the shower even managed to open it once!) And it leaks a bit. The tough part is that this particular button can be tricky to get out and put back in due to the spiral nature of the tube. I have even had people write into this blog to tell me that this happened to their child. Here is a photo. The tab part that you see is above the skin and what we open and connect a tube and then catheter syringes to to do his daily flushes. The spiral tube is below the skin and goes does into the colon. The cecum to be exact. I believe the technical term is a Chait Percutaneous Cecostomy Tube.

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So, tomorrow…..we have to be at the hospital at 7. His tube will be changed at 8 by a surgeon and Interventional Radiologist in the Interventional Radiology Lab. They do it there because dye can be injected and they can see better what they are doing. They will be doing this and checking to see if any scar tissue has developed. This is suspected.

Then, he will be taken to the OR where his G.I. doctor (at 9 a.m.) will be doing an Upper and Lower Endoscopy on him. Cannon has not been doing super great lately. His throat seems to be bothering him and the pediatrician says it is red (but not strep). He has had a lot of unexplained pain and tons of moments where he cries out over and over. Being that he is Autistic and doesn’t always interpret those feelings correctly…..He usually yells “Achoo” over and over at the top of his lungs when this happens. Cannon has also been very lethargic as of late. SO….G.I. will take care of the 2 scopes and getting a bunch of labs drawn. Basic stuff and also checking to see if he is Anemic (again) and doing a thyroid panel.

I am trying not to be nervous. It is hard but I am trying. Failing in some moments. Succeeding in others. I don’t want them to find anything. But I want there to be a solution for his pain. We need that button to go back in. As much as we fought to keep from having to put that thing in him originally….we can’t imagine life without it now. For good reason. It gave us our life BACK! Prior to the Chait……Cannon was being admitted to the hospital every 1 1/2-2 weeks for a week. We do NOT want to go back there.

While thinking about that last statement tonight…..a verse came to mind. John 14:27. “Peace I leave with you. My peace I give to you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid.” As well as Matthew 6:34. “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble for itself.” Some days….a little reminder is all you need to help you recognize the thoughts that are not productive and be able to take them captive. I will be doing a better job of that from here on out. I am committed.

If you happen to have any extra prayer time in the morning…..we would greatly appreciate any prayers for our beautiful boy! Much love!

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A Canine For Cannon?

Well, it’s finally time for me to let the “cat (well actually the dog) out of the bag.”

It is with much prayer, thought, research, more research, advice from doctors/therapists, and more prayer that we have decided to pursue trying to get Cannon a service dog. An animal bred and trained just for him. To guide and follow him through life……assisting with so many aspects that are difficult for him and also to become a best friend.

This will be a long, huge, time consuming, uphill undertaking for our family. It entails us partnering with a wonderful org called 4 Paws for Ability, Inc. and committing to raise $14,000 towards their mission. I know. It’s an incredibly lofty goal but we believe with our whole hearts that this will help make our sweet boy’s world a better place. I ask for your forgiveness in advance as I will probably be selling everything under the sun and always advertising some sort of fundraiser over the next year or so.

We struggle mightily with asking for help but that is exactly what I, now, must do. If any of you out there can afford to make a donation of any size….it would be SO VERY greatly cherished and appreciated! Below is the link where you can donate safely and easily online. The money will go straight to the org. If you prefer to mail in a donation….please ask. I have flyers that help to designate Cannon as the recipient. Or be VERY sure to put his name on the memo section of your check. To be sure it is credited to his account.

If anyone would like to do a fundraiser of any sort….please contact me! I am all ears! It can be through a business (brick and mortar or home based) or just done privately. Kids need a service project? We plan to do a lemonade stand and bake sale. As 4 Paws is a 501c3 org….things MUST be done in a very specific way so please ask me questions before doing anything. And always, always, always….if you feel so led…..share this link!

Above all else, we need prayers! We believe in the power of those prayers and in the mighty power of God. Our extensive time praying over this decision has us thinking that this is the right path. And we know that if that is the case, it will happen in His time.

As those of you who are parents know, there is NOTHING you wouldn’t do for your child. It is with that in mind that we begin our uphill climb. May God bless you ALL!

http://www.firstgiving.com/fundraiser/teamcannon/teamcannonfor4pawsforability

Light It Up Blue!

If you want to help raise awareness during Autism Awareness Month……there is a very simple way to start!  Go to the hardware store, buy a blue light bulb, put it in your porch or outdoor light fixture (just like we did on ours below), and turn it on every night during the month of April.  If you do this small thing, you will be honoring all those affected!  Autism Speaks began this campaign years ago and calls it “Light It Up Blue!”  Tons of corporate buildings, concert halls, sports venues, bridges, and such worldwide are doing this as well!  From the Empire State Building, to the Sydney Opera House, to the clubhouse of a neighborhood near our house!  Join us!

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Here is a beautiful song that is dedicated to this movement……..

 

If you want to learn more…….here is the link!

www.autismspeaks.org/LIUB