Developments of the last 3 days……

So, a LOT has happened since my last post……while Cannon was in surgery.  A LOT.  And a lot that was unexpected.  I am going to attempt to give you the bullet points version and get some sleep.  I’m allowing Mark to steal some of my cuddles from my angel at the moment but I need to get back in there.  🙂


We thought surgery would last between 1 1/2 – 2 hours. It took over 4.  The surgeon said that “the universe was against them today.”  Some crazy, unavoidable glitches with the equipment occurred, his “very large and floppy” stomach wouldn’t cooperate when it needed to be inflated (at all), they needed for an extra surgeon to be called in to run the endoscope so that she could better handle the situation, another bizarre, unavoidable equipment glitch, and so on.  In the end she said that everything was in perfectly and working well.

His wake-up was challenging. He is used to getting quicker outpatient procedures in recent years and being able to go home right after.  He was MAD when he realized that wasn’t happening.  He was also in more pain and was very nauseous…..throwing up in recovery.  He also made it extremely clear that he wanted what was on his stomach (his new G J Tube) off.  So, we had to bust out my social story from the last post and explain to him what had happened and why that couldn’t be.  He took this news FAR BETTER than we anticipated.  Thank you Jesus!  Once we found the right movie to distract him and some stronger pain meds…..we were able to move him upstairs and get him settled into the hospital for the night.

During the night, the nausea really keyed up.  He threw up 7 times and VERY forcefully.  He didn’t have much in their to emit but he was throwing his body around and really challenging us to wrangle him.  After a couple of smaller doses of anti-nausea medication…..we had to go to something much stronger which the surgeon had hoped to avoid.  But he needed to settle. Morphine was also necessary due to intense pain.  Finally around 3 a.m……he was able to rest a bit.

Day 2

Things were pretty uneventful (except for Cannon’s constant-ness of reminding us how much he wanted to go home).  That is until about 11 a.m., when all of a sudden, he threw up A TON of blood.  Pretty scary stuff!  And his G Tube (to his stomach) which had been left open to drain began seeping this as well.  It was a rusty color which means it was old.  The surgeons weren’t overly concerned because they said it was a result of the surgery.  If it was really red…..concern was warranted.  But not this.  At least at that time.  But it still freaked us out a bit to see it all go down.

We began feeding Pedialyte through his J Tube (into the small intestines) around noon. He was spacing out the Morphine well.  And they decided to begin trying to feed elemental nutrition through his J Tube around 9 p.m.  We were so hopeful.  Late night…..I began to notice the seeping from his drain increasing.  And soaking the bed.  They wrapped the end of the connector tube in a diaper…..sometimes even 2 on top of each other…..but it kept saturating them.

Day 3 (today)

Over the course of the previous night and this morning…..200+ cc’s of fluid leaked from his stomach drain. Which did not make for the most restful night.  He slept through some it…..thankfully.  I needed to stay on top of it to let the nurses know, though.  They increased the level of his feeds from 20-40 mls/hour around 6-7 a.m. and kept it that way until around 11:30 when we took a break from it all so that Mark and I could flush his Chait Button.  But just before that, they drew labs to check levels and an X-ray to check the placement of the tubes.  We proceeded with the flush.  All flushed well but it was very tough on our very weak boy.  He was continuously throwing up throughout the 40 minutes or so that he was in the restroom. And had an accident afterwards.  🙁

Did I mention that he was requiring more morphine today than yesterday?  I wasn’t thrilled with that development.

Mark and I had to leave the room for an hour each today to be taught how to insert a temporary tube if this one were to ever come out.  The stoma will close quickly if exposed and we have to know how to place a Foley catheter to hold the pathway and get him to the hospital.  We also received a visit from a rep for our home healthcare supply company.  She gave us supplies that we will need and training on how to use them for when we go home.  An IV pole, feeding pump (the very one I had been told I HAD to have…..Yahoo!), tubing, feed bags, and a backpack….to name a few.

I was starting to wonder if it might be possible for us to go home late this evening……and then the X-ray came back.  AND it showed that the J Tube has dislodged itself and is in the stomach now…..instead of the intestines. A huge disappointment and setback.  To boot, there is no one who can re-place the tube until Monday.  So, we have to stay the weekend and wait.  And we need to feed him some nutrition… we are having to do so through the tube that is on the loose in his stomach.

So, that’s the 411.  I’m super tired so I will leave you with this.  We are ok. He is handling this better than we could have hoped.  He’s not happy, he’s whiny, and disappointed. But 6 years ago when we were a fixture in this hospital…..he required conscious sedation just to tolerate being inpatient.  That is not happening right now nor does it seem like it will be necessary.  Talk about a BLESSING!!!  We have the absolute BEST doctors and NURSES (Oh my gosh…..I LOVE OUR NURSES) on the planet!  We have to navigate some details…..Mark’s work schedule, my mom’s plane ticket, and getting some more supplies from home.  But we will get it figured out.  Cannon and Roxy are missing each other terribly so we have gotten a visit approved and are also fixing that tomorrow.  Stay tuned for some super cute cuddle pics!

I will leave you with a song that is one of Cannon’s absolute faves!  We have been watching this video a few times a day since arriving to keep him as positive as possible.  And to remind him that with God in his heart…..he has all he needs to be strong, courageous, and brave!  WE LOVE YOU ALL!!!!!!!  Thank you for following our journey!

Preparing For Change

I meant to post this last night…..but I was up late packing, praying, thinking through, and writing social stories to help Cannon comprehend what is happening today.  Right now…..actually.  Because of my delinquency….I am actually finishing this up while he is in surgery.  It’s a good distraction…..really.  I will tell you about today but first…..what I wrote in preparation for today……

I am my father’s daughter.  Organized, structured, a planner.  Meticulous, particular, cautious, and conscientious.  I’m thankful for these inherited qualities.  And even though they can drive my husband and children crazy sometimes……they are invaluable in our situation.  Thanks Daddy!

The last few weeks came close to breaking me.  I wanted to give up so many times.  Frustration, aggravation, and people’s lackluster job performance were complicating my life and planning in massive ways.  I just can’t possibly begin to tell you how much back and forth has gone on.  The extreme amounts of phone calls, waiting by the phone for more phone calls, and desperate pleas to be heard.  I am ridiculously thankful to the friends and family who have prayed specifically over these struggles and listened to me as I worked through the emotions of all this.  God bless you guys!  I am forever grateful!  Some of the struggles I mentioned, I will not go into great detail on.  Like why we decided to switch surgeons after 6 years.  Short version…..go!  The insertion of this  Gastrojejunostomy (G J) Feeding Tube can be done 2 ways.  1) Inserting a Gastrostomy (G) Tube into the stomach first.  Giving the pathway anywhere from 4-8 weeks to heal and establish itself…..and then go back in and put the G J tube in that gives the option to feed either the stomach or the small intestines.  2) Inserting the G J Tube from the get go by using a slightly more complicated process for the surgeon.  But that is in NO WAY less safe for our son.  We advocated STRONGLY for what would be best from a medical AND psychological standpoint.  And in doing so…..decided to make a change.  One in which we are EXTREMELY comfortable with.  Thank the Lord!  THAT was a true answer to prayer.  A LOT of prayer!

We have been working with a team of feeding therapists and a nutritionist.  We needed to start backpack training Cannon.  He will have to wear a backpack when he is up and about.  It will contain the pump and feed bag.  He needs to get used to the practice and the weight.  So, I pulled out his old preschool backpack, tossed in a few things that are equal in weight to what he will experience and began slow, steady, daily practice.  We just did 15 minutes the first day.  Then 30….45….and we have now worked up to an hour a few times a day.  He really has been good about it.  He likes to watch timers count down.  So, we would set the oven timer and he would check in regularly to see how much more time he had.  I have been amazed and thankful thus far.  We have also been working to ween him off of his current nutritional formulas and into the elemental nutrition that he will now take through his feeding tube.  We did a slow, steady process with this as well to incrementally watch how his body would respond.  So far so good!  Which is awesome!  There is WAY more detail to that but I will spare you!  Getting feeding therapy approved and applying for help with the cost have been a few other hurdles we have been working our way over.

If you’ve followed Cannon’s journey over the years… know he already has a device called a Chait Button in his abdomen.  Which allows us to manually flush his colon from home daily.  And that we needed to protect this very pliable device from the very sensory seeking human being it was implanted in.  So, we commissioned an orthotics company to mock up a specialized abdominal binder that would cover it.  Eventually, we found a non-profit that could make these at cost for us!  Saving me HUNDREDS of dollars a year!  Well, now we need a new one.  And looking online…..the ones that are made to cover this particular device where really expensive and would take a while to order.  SO, I called the non-profit.  He looked at the one I had been online……and mocked one up in like 3 hours.  AGAIN…..saving me tons of time and money!  And met up with us on a Saturday for a fitting!  I just can’t……   Some of the human beings we have met on this journey are just impossible to describe!  They are truly EXCEPTIONAL!

Speaking of exceptional…..I have another beautiful child.  His name is Townsend and he is just that……exceptional.  I just couldn’t imagine if I tried….a more loving, caring brother.  A kinder, more thoughtful child.  And a more motivated young man in terms of pursuing his faith.  I have so very much to be grateful for.  Over the last few weeks, I have been trying to make absolute certain that he feels just as much of a priority.  Spending extra time, having little dates, and more in depth talks with him.  Hearing his questions, giving the answers I could, and just accepting and loving him through his feelings and emotions.  It’s such an important part of all this.

The final piece of preparation was getting some tools together to help Cannon understand the changes.  We didn’t want to tell him too much prior to surgery.  His anxiety has been pretty righteous lately and we didn’t want to further contribute to that.  So, we said virtually nothing.  And when he woke this morning….he saw this.

Because he is so used to going in for endoscopies and bronchoscopies…..he took the news like a champ.

But this isn’t just one of those standard days he has become accustomed to.  And we needed a more in depth method of explaining things to him when he wakes up.  So, last night I mocked this up.  I wish my bad handwriting and exhaustion hadn’t hampered this a bit. It kind of looks like my 9 year old made it….but I’m ok with it.  And I laminated it….hence the crummy glare in the photos. But overall, I think it will do. So, when he wakes up…..he will be smothered with love and attention from us, hear the spirit filled music from his new Hillsong DVD (thank you “Aunt” Melissa), and see this social story.

I think it will give him the basics and help him to not be so fearful.  Aiding him in understanding the purpose and reality of his new life.

My mind is at war with my heart right now.  When I was putting one of Cannon’s shake cups away yesterday I thought……”Will he ever drink from this again?”  And I wanna break down.  When he tells me how much “I  love rice.”  Or “I can’t wait for Thanksgiving!”…..I want to break down.  When he’s in so much pain that he could barely hold his eyes open…..and he says “I want to be healthy.”  And my heart wants to break into a million pieces……

Take this mountain weight
Take these ocean tears
Hold me through the trial
Come like hope again
Even when the fight seems lost
I’ll praise you
Even when it hurts like hell
I’ll praise you
Even when it makes no sense to sing
Louder then I’ll sing your praise
I will only sing your praise

My earthly father taught me praise God in the storm.  And my Heavenly Father taught me that surrendering in faith is not losing or defeat.  It is giving my problems completely over to the One who has already won.  And I am my FATHER’S daughter!

So, here we are…….waiting for our precious firstborn to wake up.  And we will deal with what comes next with faith, love, hope, joy, and praise in our hearts.