Home Sweet Home!

I so apologize for taking forever to let you guys know but………WE ARE HOME!!!!!  We were able to leave the hospital on Friday afternoon after getting an “ALL CLEAR” from radiology.

When we last “spoke,” Mark and I had just been told by the resident doctor assigned to Cannon’s case that he would need to finish the 3rd gallon of “Go Lytely” solution and begin a fourth.  We were so sad.  Sad that our sweet, trooper of a little guy would need another 24 hours of medicine.  He was so done, begging for some real food, and pleading with us to take the N.G. tube out of his nose.  But a couple of hours after my last post, all of a sudden, the “evidence came forth” to prove to us that things were getting better.  I will spare you the details but it became very obvious that the final “pocket of a problem” that was in his colon was passing.  About 8 diapers and 10 hours later, I was sure all was well.  And I asked them to x-ray Cannon.  The docs agreed, the x-ray was performed, and during rounds we all stood around staring at a computer screen image of my little man’s insides.  Perfectly clear and healthy ones might I add!  We were sooooo relieved!!!!

It was determined at that time that we would pull the N.G. tube after giving him another dose of Valium.  But we were going to leave the I.V. in until we were sure that he would eat and drink.  He had been on strike from both for over 24 hours!  Yet, another aim at gaining some control, I guess.  Mark, myself, Cannon’s nurse, and 2 Patient Care Techs were all apart of the “pulling out process.”  We each held a body part and the nurse loosened the tape that was holding the N.G. tube on his face and then quickly pulled the LONG tube all the way out.  A huge sigh of relief was breathed by all of us!  His nurse then unhooked his I.V. so he could be free of the I.V. pole.  We could re-attach it later if that was needed.  But it wasn’t.  Cannon quickly drank 2 cups of juice and 1 of milk.  He ate 2 cups of applesauce, some broiled cod, and an entire large baked potato.  He then wanted more milk.

Our next mission (after “Operation Hydrate and Stuff Your Face”) was to go to the playroom!  Cannon was thrilled and wobbled around with a big smile on his face.  (He wasn’t super sturdy because of the Valium so Mark or I had to follow him around and “spot” him.  🙂  But he got tired fairly quickly so we located a wagon and just walked the halls…. enjoying being tube free!  He was so happy!

After seeing that Cannon had eaten and drank PLENTY, the doctors began getting his discharge paperwork ready.  The I.V. was pulled and I put Cannon in the shower.  He must have felt so good when he was all clean, lotioned up, and in fresh, clean clothes.  For the first time in 5 days.  I also began work on the checklist I mentioned in a previous post.  Of all the things that I want to remember for next time.  Which meds work and which don’t, tricks that make things easier, necessities to bring to the hospital, requests to make to the docs, and the size of feeding tube.  (Still kicking myself for that one!) I plan to type it up and put it in Cannon’s medical binder for next time.

The last thing we had to figure out was a drug to send him home with for the inevitable cramping that would occur in a few hours.  The “Go Lytely” medicine wrecks havoc on Cannon’s stomach after the fact.  It is so pathetic to watch.  He can’t sit when its bad.  And will just scream a horrific pained scream and clench and tense every muscle in his body.  The docs made that decision, we picked it up from the hospital pharmacy, said goodbye to all our beloved nurses and techs, and hit the door.  As we drove off the property, Cannon said over and over……”No more hospital.”  🙂

When we arrived home, I went to get Cannon out of his car seat and he was doing something he does often.  Writing.  He writes on everything he can constantly.  It is his latest obsession.  He simply uses his finger and writes words he sees from books, t.v., or just thoughts that come into his head (scripts) on couches, counters, his body…….any surface basically.  Sometimes he will say what he is writing while he is doing it and sometimes not.   This time he was and it touched my soul when I realized what he was saying.  I often listen to youtube videos of my favorite Christian artists while I am cooking or cleaning.  Cannon became particularly fond of one song and video and asks for me to play it often.  He says, “Hear that song about the Lord?”    🙂  And I know exactly which one he means.  The song is called “Everyone Needs A Little” by Kari Jobe.  We even listened to it and sang along a couple of time when things were rough in the hospital.  This particular video is a lyric video that someone other than the artist had made.  There are a few verses typed on the screen during instrumental portions of the song and Cannon always asks me to read them to him.  When I got him out the car Friday, I waited for him to finish as my heart melted.  He was writing on his leg “So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will lift you up with my righteous right hand.”  Isaiah 41:10  I mean, is he every Mother’s dream or what?!!

Now, please enjoy this song that my sweet Cannon loves so.  Let it minister to your heart about the assurance we have in a loving and faithful God. The eternal hope that we have because of Jesus Christ.  And the intimate relationship that is possible if you merely repent, believe, and accept all that God has to offer you.  There is peace, rest, and healing in the arms of God, my friends.  And I pray that you will come to know this if you don’t already.  Once again, thank you friends for praying us through our recent struggle.  God bless each of you!


A Couple of Rough Days…..

If you are reading this blog post…….you are supporting me and my family.  And before I say anything else tonight…….I just want to say “THANK YOU” for that!  We have been absolutely overwhelmed this last week with love, prayers, and encouragement for our family and for Cannon.  Whether it be comments via social media or this blog.  Visitors to the hospital.  Phone calls, texts, emails and such.  Gifts brought to the hospital.  I mean, seriously!  You guys know how to make us feel loved!  And we could not be more grateful!  From the bottom of our hearts……THANK YOU!

The last couple of days have been R-O-U-G-H.  We have a system that is pretty worked out when it comes to these hospitalizations but there is no way to make it easy. The sheer volume of output and diapers have been tremendous.  The wait times for tests and results…..LONGer than usual.  And the sensory and physical pain we have had to witness Cannon go through is just plain heartbreaking.  He has, as always, amazed us even still with his strength, courage, and capacity for love.   This child blows my mind constantly!  He thanks me for every diaper change and even just for pulling up his blanket.  Every time.  I mean, how sweet can you get??!!  I LOVE THIS BOY!

Ok Kimberly…….focus!  Sorry, I am wiped so I am going to shoot for the abbreviated version.  For once.  🙂  Our week so far has looked something like this.  Monday……..brought to E.R., determined to be impacted, admitted to hospital, plan of action devised.  Tuesday……waited most of day for anesthesia to put in N.G. tube and I.V., first gallon of “Go Lytely” (medicine) begun.  Wednesday……1st gallon completed, 1st x-rays taken, 2nd gallon begun while waiting, 1st x-rays show movement but still impacted.  Thursday……2nd gallon completed, 2nd x-ray taken, 3rd gallon begun, 2nd x-ray shows still not clear.  And where we are at this exact moment is that we are finishing the 3rd gallon and will start a 4th that will run through the night.  He is still not clear.  We are getting there but we aren’t there yet.  In the morning, we will x-ray again and hopefully see a squeaky clean colon.  And be allowed to go home.  With only one more battle to fight.  The horrible cramping that comes the day after this particular medicine.

I admit it.  I shed a few tears in the privacy of the Parent Lounge tonight while I inhaled a fast dinner.  We had been given so much hope since we got here that “this time…..it wasn’t so bad.”  And I fell for it.  Even though I knew his body better than that.  To the average doctor…..his initial x-ray wasn’t as bad as previous admissions.  So that should mean it would clean out faster.  But his body just takes its sweet time to get rid of what it needs to get rid of.  And even though we are close, the thought of starting a 4th gallon……just broke my heart.  Cannon is so ready for this to be over.  He wants this tube out of his nose and the I.V. out of his hand.  He wants to go play in the playroom.  And to eat and drink what he wants again.  He begged and cried so hard for milk today.  But he can only have clear liquids while this is going on.  He is refusing to drink so that leaves jello.  And there is only one kind that we can find in this city that does not have artificial colors (a restriction of his diet).  And the flavor is peach mango.  A strong one that he doesn’t particularly care for.  He eats about 1 small cup a day.  He has also decided since we got here that he will not take his meds.  He is normally a fantastic medicine taker.  And thank God for that since he takes 13 meds a day!  But not right now.  So, we are putting what we can through his N.G. tube and trying to hide the others in jello.  He just has no control over anything right now and this medicine thing is THE one that he can try to put his foot down on.

Anyways, tonight, when I let a tear or two or three spill out……I just had to sit there and tell myself over and over that God is in control.  Even if my heart wasn’t totally cooperating with my mind……I needed to say it.  A “fake it till you make it” of sorts.  Because I do know that this is so .  Even in the weak moments.  I came back in to Cannon and prayed with him as well.  I prayed desperately for God to take his pain away, to heal his body completely, and to allow Cannon to feel HIS love and strength all his life, not just tonight.  I long for my children to develop the habit of praying when they need encouragement and/or feel weak.  And to know that the only true fulfillment in life is the kind you feel when you love and trust God.   Even when things are hard or don’t make sense.

I took Townsend down to the cafeteria for a quick lunch today.  After we got our food and walked into the dining area, I discovered there was not one free table in the place.  A woman called to me that I was welcome to sit with her.  So, we graciously accepted her invitation!  Upon talking to this woman, I gained some real perspective.  She was there while her husband was having his second major surgery in a month. (The first was open heart surgery.)  He had found out this morning he has kidney cancer and would need to have a kidney removed today.  And that they would not know until they got in there if the cancer had spread.  My heart went out to her and I offered to pray with her.  I ask you now to do the same for this stranger I will probably never see again.  His wife’s name was Virginia and his name is Ollie.  My child will most likely be well again in the next day or two and his issue should not ever be life threatening.  Every time I hear a story like this or the whir of the hospital’s helicopter landing on the roof…..I gain perspective.  It could always be worse.

It is my hope that you will now listen to and meditate on this precious song.  One of my current faves.  I am posting the lyric video version so you can truly focus on the words.  I pray that God reminds you through it that he is always near.  He is real.  And worthy of our trust and love.  Especially when life is hard!  Love ya’ll!  Thank you again for all the support!

The “Anti-Protocol”……

Well friends, our AWESOME run of avoiding the hospital has come to an end.  🙁  We had to come back in yesterday after a few weeks of evaluating Cannon’s behavior to determine that his tummy wasn’t feeling so good.  As you may remember, due to his limited ability to talk…..we have to use behavior as our gauge.  We look for things like insomnia, decreased appetite, intense increase in over stimulating sensory behavior, teeth clinching, increased stimming and scripting, firm belly, and crashing his stomach into hard things (like the arm of the couch).

We came to the E.R. yesterday and the x-rays showed areas of concern in his ascending and descending colons.  We were admitted to the hospital at that time and they began giving Cannon high concentrations of Miralax solution.  After 6 capfuls (1 is a regular adult dose) of this stuff yesterday, he had super limited to virtually no output and it was decided for certain that we had to go ahead with OUR usual protocol.  The hospital here often calls Cannon “the anti-protocol,” as they do nothing for Cannon… the same as they would for others.  For example, they never sedate just to put an N.G. tube in.  But with Cannon, it is just the most humane way to operate.  He is a strong and able fighter and can go many rounds (and win!) even with multiple adults trying to hold him down!  Therefore, we take him in the O.R. with his pajamas still on and give him the mask with the anesthetic for about 30 seconds-1 minute.  After he is asleep, they then put him in a hospital gown, hook up his I.V., place the N.G. tube down his throat into his stomach, and place the pulse ox on his toe.  They put socks over his hands and feet and tape them on.  And also something referred to as “No No’s” over his elbows to keep him from being able to bend them.  These are precautionary measures to hopefully keep him from pulling these things off.

So, yesterday we pretty much just came up with our plan and got a decent night’s sleep.  We were to be added onto the surgery schedule ASAP first thing this morning.  Well, just like last time……that still took a while.  Busy surgery day, I guess.  We didn’t end up having the procedure until 2 p.m.  And my poor little guy hadn’t had a meal since breakfast the previous day!  That was a bit hard but we spent our waiting time in the hospital playroom playing with toys and watching t.v.  We took a shower since that will not happen again until the cleanout is over.  We visited the library here and read and checked out some books.  Played with the interactive wall and just walked the halls.   Cannon decided to literally walk and walk and walk the halls.  Not sure if he was delirious or just had a lot of nervous energy.  It was kind of fun, though.  Like a walk down memory lane.  We saw so many of his former nurses and everybody wanted hugs and to tell Cannon how tall he was and how much older he looked.  I really like and admire all of these individuals for their kindness and for the spectacular care they have given my son over the last year and some change……so it was really nice to get to say hello to everyone.

When we got the call to go downstairs, we did so and began consulting with the nurses and resident about how things would go.  I wanted to press for a certain anesthetic that we had had success with a previous time.  Because the last time he had to go under (well, every time except for once), he did not come out of it well.  He becomes violent and is incredibly impossible to deal with without high doses of drugs.  I was able to convince them to use what I wanted to some extent so I was somewhat content with that.  I am still kicking myself though because I forgot to request a certain size N.G. tube.  On a previous visit, he was given a size 10 feeding tube and was horse for a week after.  With lots of throat irritation as well.  We switched back to size 9 the last time and things went much smoother.  Well, I forgot to mention it this time until it was too late and the bigger size was put in.  Grrrrr!  So mad at myself!  It was in my notes and everything.  Oh well!  Not much I can do about it now.  I have decided to make myself a checklist for next time.  Of all the thing to request and ensure that they happen.  So, this won’t happen again.

He woke up okay from anesthesia but did end up getting agitated. But agitated not violent (an improvement nonetheless).  So the anesthesiologist gave him a little something to relax him.  And we came back up to our room.  However, that drug didn’t work and he got pretty upset.  So, some Valium was grabbed quickly.  Cannon takes a scheduled dose of Valium every 6 hours while he is here to keep him calm enough to tolerate the tubes.  (Another “anti-protocol” measure)  When that wasn’t enough and things got really rough, more had to be grabbed.  We still spent most of the evening riding the roller coaster of emotion with Cannon.  He knows what is coming and isn’t too happy about it.  But it must be done.  And he knows that, too.   The staff began giving Cannon the “Go Lytely” around 5:30.  This is the medicine that will be pumped in him by the gallon until his colon is cleaned out.  Generally, it takes each gallon 24 hours to go in.  Labs and new x-rays are done at the end of each gallon.  On the average person, 1/2 to 1 gallon should be enough.  But with Cannon, we have never gotten out of here without at least 3 gallons.  It’s just crazy!  And on the average person, they stop the medicine and wait for the x-rays when each gallon is complete.  But with Cannon, they keep it going until the results are in.  Because we know how unlikely it can be that the first couple of gallons do work.  More ways that Cannon is the “anti-protocol.”

I was able to take Townsend down to the cafeteria tonight for dinner while Mark held down the fort.  I really try to steal away a few minutes with him each day when they visit so he knows that he is important, too.  He loves it and knows that this means he is getting a treat!  Applesauce is a treat at home but in the hospital…..its usually a brownie or pudding.  And he milks it!   🙂

Well friends, we would appreciate your prayers as the next few days will be rough.  Dealing with the “results” of the cleanout are gross to say the least and pretty painful for my sweet boy.  We have prayed often with Cannon and reminded him that God is with him.  Giving him strength to deal with anything, loving him like no other, and giving us all hope.  We also thanked our Father that it has been over 4 months since the last time he was here!  Quite a victory for our family!  Praise God!   🙂

A Cool Opportunity (Part 1)…..

Several months ago, I was asked by a friend to speak to a group that she is a member of.  A society of elite teachers called Delta Kappa Gamma.  They were interested in hearing about Autism from a mother’s perspective.  Our story and any advice that I had for the teachers as to how to handle kiddos like Cannon in the classroom.  I was humbled and honored to be asked.  I thought this was such a cool opportunity to do some good and give back to the Autism community.  Something that God has really laid on my heart.

I immediately had tons of ideas flood my mind and it took a long time to settle down and decide exactly how I wanted to approach it.  I determined that I wanted to use a power point presentation to tell our story.  I felt I needed the audience to truly connect with us.  To see the timeline of regression, impossible struggles, and gut wrenching heartache we experienced. And to evoke empathy and compassion towards Cannon’s day-to-day plight.  In hopes of establishing a desire in their hearts to change teaching styles and techniques to better accommodate children with Autism in their classrooms.  I am an extremely visual person and wanted to tell the story using photos, powerful words, and music that was specific to the struggle that is Autism.  I had, however, somehow managed to escape college without ever having to make a power point (or taking Public Speaking for that matter).  So I wasn’t sure I could pull it off.  You may remember that I have admitted to not being the most computer savvy mom on the block.  But I found an amazing app (shout out to the “Keynote” app) that made it a total cinch.  After uploading tons of old photos, digging deep to write our story with emotion and truth, and researching and downloading great Autism songs……the task was complete.  And I am happy with how it turned out.

So, in January, the day arrived that I was to give my presentation to the Delta Kappa Gamma Society.  Our story was the first half of the presentation and I did a second power point piece for the advice portion of the talk.  (I will tell you about that part in my next post.)  I was introduced to the group of approximately 50 teachers by my good friend Darby.  Hearing her tell of my credentials was quite laughable.  They are saturated in athletics with jobs in recreation, strength and conditioning, and coaching.  I have a degree in Physical Education and Health.  But not in teaching it.  However, I did.  At a private Christian school for a while before moving out west.  When I got to my current location, I worked as a Long Term Substitute Teacher due to my lack of a teaching degree.  I was sitting there listening to her talk and wondering if these teachers were thinking….. what on earth was I doing there.  And what could I possibly teach THEM.  I was soooo nervous!  I even joked that I was going to stand behind a nearby podium instead of the table I had set up so that they couldn’t see how bad I fidget.  Then, I took a deep breath, said a silent prayer, and jumped right in!

I thanked them for allowing me to come and speak on behalf of all the families struggling with this disorder.  I told them how our family life has been completely redefined by the joy and heartache of Autism.  And what a challenge it is to meet our son in his world and draw him into ours.  How I am constantly tempted when asked by strangers….”What do you do?”…….to say “I do Autism.”  Because there is no part of my day that isn’t touched by my son’s disability.  I told them that I am just a mom…..not a speaker.  And that I may not have been a classically trained teacher but that I had logged a lot of hours in a classroom and had done tons of research on this subject.  And then…… I deferred to my video….to allow them a visual look into our lives and the transition our son made from typical 2 year old to atypical child with Autism.

Now, here is your chance to view that same video.  And to know the whole story.  Please watch and if you feel so led……share.  More on this cool opportunity in part 2…..my next post……coming soon!  Much love!