Just a quick…..yes, quick note. Ok, scrape yourself off the floor…..It could happen. We will see. 🙂
We were released from the hospital this evening and made it home ok. Cannon had a pretty good night last night. Except for the 2 o’clock hour. He was up for most of that crying. Even after pain meds. We were just about to resort to morphine when he finally calmed down. After that, he continued to sleep well.
The morning was filled with consults and rounds. Consults with all the residents from both surgery and the team following him on the hospital floor. Then, rounds with both. It was decided that he could go home after lunch, if he was eating well. If we, once again, flushed the tube successfully ourselves, and after he had a shower. The latter was because we had really protected him from seeing the button to this point and we knew it would probably be somewhat traumatic when he finally did.
Lunch went well. He ate his favorite, salmon pasta, from home. A baked potato and some grapes. He was a hungry boy. Then, Mark, myself, and his nurse took Cannon in the bathroom to flush the tube. Mark did the honors this time while the nurse and I tried to hold him. It was super tough and we struggled to manage. Our anxiety level about doing this at home with just the 2 of us is high. But we have written Cannon a new social story to help with that and we will just have to pray hard on that one. Then, came the shower. He usually loves this part. To get clean after days of sweating and laying in bed. But this time was very different. He was so wobbly that I had a really hard time trying to hold him up while washing him. He just cried. Hard. He could see himself in a mirror nearby and I know he could see this new thing protruding from his body. It really scared him and he cried sad, crocodile tears. Poor buddy! He ended up having such an intense meltdown that I had to enlist help and also more meds. I hate this for him! It just breaks your heart! Even though we know it is what’s best.
After his shower, we put his new band on him for the first time. A local prosthetics/orthotics company made Cannon 2 special bands to help protect his new button. They are wide abdominal binders that velcro together in the back. And have a donut cut out of pool safe material velcro-ed inside. He doesn’t like it but this is the best protection we can get for him. And he will hopefully get used to them.
After taking a last ride in the wagon around the unit to say our goodbyes…….and dropping off a card and flowers at the nurses station for our hospital family…….we were headed out. For the last time?? Maybe…..only time will tell. One of the Child Life Specialists and I decided that if we made it a few months with no visits……..that we would come back for a visit and get one last bead for our Beads of Courage. It is the “End of Treatment” bead. What a day that could be! That is totally our goal now!
The ride home was tough. Cannon felt every bump in the road and really struggled with the fact that he had to sit straight up. That is really painful for him right now. Laying flat or even standing for short periods of time are better. He cried. Once we were home, I had to carry him in laying horizontal across my arms. And he laid still on the coach until bedtime. Where he is now sleeping comfortably…….and I am going to go join him in a sec!
So, home sweet home we are once again. To stay….we hope. To figure how to navigate all of the new challenges that come with being home alone with this device. To do what a fabulous friend of mine always preaches…..to “Have faith, expect miracles.”
Goodnight wonderful blog family! Thank from the bottom of my heart for praying my boy home! We love all of you!
Yesterday afternoon, as we waited for Cannon to wake up from surgery, we braced ourselves for the worst. We imagined there would be lots of screaming, kicking, fighting, and aggressive attempts to get this foreign body out of HIS body. And we had a plan. Mark would hold his freakishly strong legs and I would try and prevent him from going after the button with his hands. We had his favorite show pulled up via Netflix on our laptop….within perfect view. Ready to be un-paused. We had his menagerie of favorite stuffed animals and blanket there for comfort. I was snuggled up next to him. We even had some jello and a spoon handy along with apple juice incase he was hungry or thirsty. The anesthesiologists were warned and ready to give him a little somethin’ somethin’ immediately if things were to go south fast. The nurse put a sock over his hands that was taped on to slow his grabbing of the button and IV. We thought we had thought of everything. And so, we waited. And with his history of waking up like an animal, we braced ourselves. But no one…..especially not us…..could have dreamt up what would happen next.
Or what wouldn’t happen next…..I should say.
When Cannon woke up, he whined. That’s it. A slow, steady whine. Not a cry, scream, or true protest. Just a whine. I watched him closely. First, because I wanted the nurse to page the doc at very first thought of problem. Second, because I was so surprised. He never comes out of anesthesia well and this could have been the worst time yet. Then, I thought, this won’t last long. There is no way. One thing we did notice was that he kept touching his nose. He was fascinated that he woke up and there was no tube there. He even asked us where the tube was. Poor guy….so used to NG tubes. When they were prepping him to go up to his room, I thought……Great! He’s going to freak out in the elevator and we will be in trouble. But he didn’t. When we got to the room, he did start to cry. But you could also make a case for the fact that there were a lot of people in the room. A couple new docs checking him over, a tech doing vitals, and a nurse asking lots of questions. So, he was given Tylenol with Codeine and I was told to let them know quickly if I saw it wasn’t enough and they would administer Morphine. But we didn’t have to. We read over the 2nd social story we had written up for him (see the last post) a few times. Just so we could be sure he knew what was going on. At least in some capacity. All afternoon and evening for the most part, he just laid around. Watching a bunch of new videos and reading some newly acquired books. Purchased for the “occasion.” And he was a calm little guy. No one could believe it. The only real tough part was that he couldn’t fall asleep. He was up until midnight and briefly a couple of other times throughout the night. And then awake for good at 5 a.m.
I thought for sure my tired boy would be soooo grouchy. But he wasn’t. I think around 10-ish, he began grimacing in what appeared to be a pretty healthy dose of pain even with the Tylenol. So, we did ask for Morphine at that point. And he chilled right out. And hasn’t had any more the rest of the day. He has been cracking us up with one liners all day and even trying to negotiate for time in the playroom before he was released to get up and walk around. He told his day nurse to “Get out of town” when she tried to touch him at the beginning of shift. By the end, he was assisting in the placement of the stethoscope on his chest and then laughing at the reaction he got when he decided to “play the drum” on it while she was listening! Lots of smiles and a high 5 were her parting gift at the end of shift. All the docs and nurses are used to seeing Cannon here for a clean out. And he is heavily restrained, has an intrusive IV, and a tube stuck in his nose and down into his tummy. And he is grumpy and fighting any kind of contact or mere presence in the room. Not this time. He is being so accepting of vitals and talking up a storm. He wants to get up and move around. He has been playing in the playroom sporadically throughout the day. Everyone is totally shocked and enjoying seeing what the real Cannon is like. This reaction is really all we could have hoped for.
Now, don’t get me wrong. You make a move towards that dressing and the old Cannon comes back. And fast. Which is totally to be expected! He does not like that one bit. Every 6 hours we have been removing the dressing to flush the button and that is not a happy time for our guy. It is usually at least a 3 man job. But we are getting through it. And hopefully that will get better in time. In a regular kiddo, it would. But with Cannon and his extreme sensory issues, only time will tell. The surgeon is still of the opinion that that is doubtful and we don’t blame her for thinking that way. We are just going to pray that a miracle occurs and he develops the ability to cope with this new, scary thing.
I have spent a lot of the day in training. A specialized nurse has been instructed to teach Mark and I the ropes when it comes to this new device. We have learned how to clean and sterilize our instruments, the protocol for drawing the fluid that will do the flushing, and how to administer the flush into the button. We also had to learn how to put in a temporary catheter just incase he were to pull out the button. It is overwhelming and scary right now. But this evening, with a nurse and Mark holding him……I flushed it for the first time. Go me! 🙂
There is talk that if things keep going this well, we could go home tomorrow. He needs to be a little calmer during the flushing procedure, not require morphine, and for the wound to stay clean and free of infection. All looks good tonight but we will see how tomorrow goes. We are really praying that will happen.
Because we are needed at home. This difficult time in our lives is not just hard on Cannon. It is becoming hard on Townsend. He used to think the hospital was all fun and games. And even though he doesn’t like to see his brother hurt, there are a lot of fun things to do here. The library, toy store, interactive wall, train, therapy dogs, musicians, and playroom, to name a few, are a blast! While all the nurses and techs just love our little ray of sunshine and spoil him rotten! It used to be that he would show his distress once we got home from the hospital. He would insist on Daddy getting him when I would go to get him up in the morning. Because Daddy is the one who would take care of him when I stayed with Cannon. He tended to do that for 1-2 weeks after. Now, he has an occasional tantrum and purely doesn’t listen sometimes. Probably for attention. Even if its negative. When he is at the hospital, he doesn’t get his daily nap. Which he really needs. And this week, while home with my mom, he got sick. And I wasn’t there. Which broke my heart and his, too. I am sure he just doesn’t understand. Cannon gets sick and we take him away by himself. Townsend gets sick and neither Mark nor I are there or bother to come home. Tough for a 3 year old to comprehend. Apparently he just cried for me all day and begged to come to the hospital. And my mom told me that this morning, the first thing she heard over the monitor was,”Grandmommy, can we go to the hospital please?” I need to get home so my precious little boy can know how much we love them BOTH. It so often seems like its all about Cannon. But BOTH of my boys are awesome and I want them to feel equally loved.
Tonight, we are just feeling so so blessed! God heard our prayers and so far has fulfilled them beyond our wildest dreams! HE is so so good to us! I also have to sound like a broken record for a moment and thank all of you! You cannot possibly know how comforting it was to know that there were literally people all over the world praying while our son was in surgery! It is just so touching and we could not possibly come up with the words to express our true gratitude! We also want to acknowledge all of those who left comments here, sent emails, placed phone calls, come to visit, brought or sent gifts, and left positive Facebook comments. I am trying to respond with thanks but am a little overwhelmed with the enormity of the task and exhaustion at this present time. Please forgive me but know that we are so very very grateful for those who took time out of their days to encourage us! I always say it but it is always true…….we are blessed beyond measure! MUCH LOVE TO ALL!
We hate having to go to the hospital all the time for clean outs. I hate the smell of the Go Lytely solution. Watching Cannon struggle to get free and calling “Save me!” while being masked in Anesthesia. I hate every x-ray that comes back not clear. And I hate that it takes 3-4 times the amount of medicine it takes an adult to get clear. But at least we know what to expect, we know all the procedures and potential complications. But today was a new day. We had no idea what to expect. This was unchartered territory. All I knew was that I loathed this day. I never wanted it to come. I prayed hard that it would never come. But it did. And I was know forced to put my faith into action and trust God that this was the right thing for Cannon. And that He had a plan.
Our day began around 5:15. We needed to leave by 6:30 and I still had a lot of packing to do. I got both boys up and settled watching Mickey Mouse Clubhouse and playing with my mom before jumping in the shower. Ahhh! My thinking place. It is the only somewhat quiet place in my life. I get a lot of thinking done here. To-do lists. Sorting out problems. Brainstorming ideas. It is also where I cry. And this morning, I cried A LOT. Cannon is very intuitive. He picks up on things even though he may not know how to respond or react to what he picks up on. And he can turn around and show signs of anxiety or upset. I need to be strong for him. So I try to get my emotions out as much as possible when he is not around so as not to do that. But even with that release, he was still tense and very anxious this morning. When we were about to leave and he saw the luggage by the door, he ran screaming through the house, “No, no, no HOSPITAL!” Pretty much broke our hearts. Mark had to chase him down and kind of force him into his car seat. I got in the car and then had a thought. I ran back in the house to grab paper and a Sharpie. And penned this…….
This is called a social story. These are a tool used with kiddos like Cannon to help them understand when something difficult or confusing is going on. Social stories are helpful because we are just never truly sure whether Cannon is listening and comprehending when we speak. But he loves to read…..so the information is getting in there in at least some capacity. The premise behind them is to explain with minimal but specific detail what is going to happen, why, what it will feel like, and buffer it with positivity. The ultimate goal of the story is to increase the individual’s understanding of, make him more comfortable in, and possibly suggest some appropriate responses for the situation in question. We have used them sparingly in the past. Not enough for sure. And usually think of them after the fact. But not this time….thank goodness. I was amazed that after he read the words through the second time in the car…..his meltdown ceased and never resurfaced.
When we arrived at the Surgery Center in the hospital, we checked in, filled out paperwork, and waited for what turned into hours. His surgery was scheduled for 8:50 and we were to arrive at 7:30. Well, there were “logistics” problems with the surgery before his which pushed Cannon’s start time all the way back to almost 11. When they called us to go from the Surgery Waiting Room to Pre Op…..Cannon got anxious. So, we pulled out his social story and read it through twice. He then allowed me to guide him down the hall. After all the Anesthesia paperwork was signed, he was getting anxious again. So, we read the story through one last time. And then downed an oral sedative cocktail via syringe. But Cannon managed to leave us all cracking up before heading off to sleep. He said, “Let’s get some shut eye!” I mean…..are you kidding me kiddo??!! It was HILARIOUS! Not sure where he got that one but it was an outstanding one liner. The Anesthesiologist said, “Yep buddy, I AM the Sandman!”
It was now time to wait again. The surgery should take about an hour and a half. I admit. I broke down. I cried A LOT. The thought of them poking holes in my baby. Leaving scars that will be there forever on his precious 5 year old body. It was a hard pill to swallow. We tried to busy ourselves with calling family, checking email, grabbing lunch, etc. We also wrote another social story to help Cannon when he woke up and had a wonderful visit from our beloved pastor. It still felt like forever. I’ve said it before and I’ll say it again……I just can’t believe it came to this. Here was the second social story…..
When the surgeon surfaced, she called us into a small room and shut the door. She presented us with 2 boxes and a photo. The photo was of the work done on his colon. The boxes where Mic-Key buttons. They had ordered the regular and mini sizes for Cannon’s surgery as they were not sure which would best fit his small body. The mini didn’t fit but she wants us to hold onto it as it may in the future. The other box had housed the button that now resides in my child and also the tube that will be used to flush him. She said the surgery had gone well and all had been accomplished. She also expressed grave concern over whether he would be able to tolerate the button and whether this was truly going to solve his problem. She had watched me struggle just to get his ID band on his ankle earlier and really questioned things even before operating. The surgeon also thinks that there is more going on than what we think. She recommended another test that has been brought up before to test for bacterial overgrowth. We have discussed this before with our GI doc but it is a virtual impossibility due to the requirements of the test. Per my memory, you have to blow into a machine for an hour. A tall order. I remember our speech therapist at the time telling me her 13 year old daughter had had to do it and struggled. So, I don’t know. We will see what they decide to do. I am just focused on the button right now. Hoping and praying that it WILL work.
While I was waiting today, I was searching for strength and the ability to cope with what was happening along with what was to come. I thought of 2 verses. One is my life verse. The one I always look to for obvious reasons. “I can do all things through Christ who strengthens me.” Phillipians 4:13 This verse has helped me through so much. Training for the Junior Olympics back in the day, my first couple of years teaching and coaching, and the loss of my first pregnancy to name a few. It says it all and is my “I think I can, I think I can” type mantra. The other verse I love is Isaiah 58:9 which says “Let me seek more than reasons, your wisdom; more than answers, your approval; more than peace, your blessed presence in my life.” It is just a great encourager to try not to search for why….just trust God’s plan. To try not to figure it out yourself, to seek to please God. And rather than to strive for peace in your life, to just seek to have God in it. And all will be ok. I also listened to a particular song a few times. It is called “Waiting Room” by Jonny Diaz. I am so thankful for the honesty and encouragement in this song. My favorite lyrics are “During this time Lord, I must keep in mind that you’re always wiser than I. Because you have a much better purpose and you have a far greater plan and You have a bigger perspective cuz you hold this world in your hands.” The first link is Jonny himself explaining the song. And the second is a lyric video of the actual song. I pray the words will mean something to each of you, no matter what you are going through. Here it is…….. Be blessed!
Tomorrow is the big day. Surgery day. And I would be lying through my teeth if I didn’t say I was nervous and scared.
We were feeling so confident due to all the great things we had heard about the surgeon and also the procedure. How foolproof it was. This afternoon, we consulted with that surgeon and the first words out of her mouth were. “This is not a cure -all.” My mouth hit the floor. I mean….WHAT??!! I expected her to tell me all the things that could go wrong. You know…..all the things that happen in 1/1,000,000 cases or something. But I didn’t expect her to contradict all that the other docs had been saying. What she did tell us was that once the button is usable…..the solution that is injected into it can cause a lot of cramping. That, folks, is not good. Because of Cannon’s sensory issues…..cramping is a very bad thing. Any pain or sensation is magnified to the hills in his little body. She also questioned whether we were going to be able to put the device back in if he pulled it out. Not because we are incompetent but because he is such a fighter. And that is a very valid concern.
Here is a picture of what the devise might look like.
She will make an incision under his belly button and insert a camera. This will tell her where to make the second incision which will be the permanent site of the button. She will then pull the colon up, attach it to the abdominal wall as an anchor, and attach the button to a part of the colon. When we are ready to use the button, we will open it, insert a long tube, and inject a solution of glycerin oil and saline into it. This will irritate the colon causing it to empty in a few minutes. Hopefully. She also questioned what we had been told about that time frame and the healing threshold we had been instructed on as well. And multiple other things. My mom and the boys were with me. My mom and I just kind of sat there with blank stares. We just couldn’t believe what we were hearing. We were so sure this was the right thing to do. And now……it just made me more nervous for my sweet boy.
But we have made the decision and it is our only option other than continuing to bring him back to the hospital every 3 weeks. So, my mom and I decided to pray in a unique way tonight. We prayed that if this is not the right choice, that Cannon would wake up with a fever tomorrow. Because if he has a fever, they would have to reschedule the surgery. Silly, huh?
Well, I better go finish packing and get to bed. We would be honored beyond words if any of you would pray for our precious boy tomorrow. Pray for tolerance of the button above all else. Because that is truly what will make or break this surgery! We love and appreciate each and every one of you who come here, read and follow our journey, and pray for our family. What an honor you bestow upon us. And we could never thank y’all enough! The final pics of the night were from a recent photo shoot. Now here’s hoping and praying that we can get this smile back soon and that he will still love all the same things…..like baseball! 🙂
Growing up, I loved lots of things. Mostly sports but also music and working with children. I, like most kids had many dreams of potential careers over those formative years. In the 5th grade, I wanted to be a cosmetologist and do make-up in the mall. In 7th grade, I wanted to play professional basketball. In high school, I volunteered at the local children’s hospital and thought I really wanted to do Child Life. Play therapy with kiddos in hospitals. And in college, I worked as an Undergraduate Assistant in the Strength and Conditioning Department. And wanted to pursue that as my next step.
But during all that time, there was one thing that I knew with all my soul that I wanted to do. That never ever changed. And was the only thing I really truly wanted. It was to be a mother. It didn’t matter to how many children or what sex they were. It didn’t matter their skin color or if they were mine biologically. I just wanted to have children to call mine. I am sure that many many women have had the same feelings or maybe just assumed that they would take that step when they reached the right age and/or stage in life. But I wanted it with every fiber of my being….ALWAYS. I have forever said that a career was never super important to me. Education….yes. But I didn’t need a career to be fulfilled. I just wanted to be a mommy. And boy, did God bless me with my wish.
5 years ago, this past February I got my first glance at my precious Cannon. A glance that not only took my breath away but one that I appreciated that much more because he was my second pregnancy. I lost my first baby in the very beginning of the second trimester. And it was a crushing blow. But that time was the most spiritual experience of my life. I was crying out to God constantly in my grief and I felt His presence like nothing I could have ever imagined beforehand. It was truly like the Footprints poem in action. He carried me through that time and comforted me. Like only a Father can. A Heavenly Father….that is. Cannon was everything I could have hoped for. Obviously smart from the start, absolutely adorable, incredibly lively, very healthy, a good sleeper, and so so snuggly! He did everything early so I didn’t have time to worry. Teething, crawling, walking, talking. And even with all that has transpired and changed since those early days…..I still adore every second with him. He is my buddy! Our relationship is beyond special. And I wouldn’t trade him for a “normal” kiddo EVER.
My sweet Townsend made his entrance into the world just over 3 years ago. His joy is his most prominent characteristic. We have always said that God knew we would need Townsend. His nickname is the “Ambassador of Happiness.” He has an infectious laugh, a fantastic smile, a good good heart, lots of love to share with anyone, and boy is he social! He talks constantly and is just pure sunshine. Always good for a one liner. And thinks his brother walks on water. I just can’t say enough about him. He makes my heart smile!
I know this post is late getting up for Mother’s Day but I sure hope all the Mommas out there had a great one! I got to spend my day with my mom. What a gift! She is the most giving person I have ever known. She hops on a plane and travels cross country to help us out at the drop of a hat. And she has done that for the umpteenth time this week. To help us with Townsend during Cannon’s upcoming surgery.
Motherhood is an amazing gift and I will never take it for granted or stop thanking God daily for my little blessings. Or for giving me ALL I EVER WANTED! 🙂
Craziness…..is the only way to describe our day yesterday. Complete and total craziness.
I am going to make this quick as I am pretty exhausted and its late. The port surgery didn’t happen. It was called off in the 11th hour so to speak. In the Surgery Waiting Room with all the paperwork signed and ready to go. Cannon’s x-rays upon the completion of his 3rd gallon of Go Lytely solution were totally clear! Yay! And the docs following his case simply changed their minds. They believe that they can gain enough IV access to complete the surgery next week and that after that, if the surgery works, he would no longer need the port. So, why put it in??!! We were surprised because its importance in spite of all that I just mentioned had been so intensely stressed to us less than 24 hours earlier. And we had resigned ourselves and agreed to allow the surgery. But we were incredibly relieved that he would not have to go through one more big surgery. I was giddy and smiling from ear to ear! And just so, so thankful!
We still have the surgery next week on the horizon. And its a big one! But right now, we are rejoicing in this small miracle. And celebrating it with a few refreshing days home! Before life as we know it will change dramatically. We are constantly being asked by our wonderful friends and family….”What can we do for you?” I am hideous at asking for help. It is an incredible weakness of mine. But I am going to try. Here is a very specific prayer request but one that is extremely vital to the success of Cannon’s upcoming surgery. We have complete faith in the skill level and competence of the surgeons. That is not an issue. We feel confident that his body will heal in time and accept this new device as an aide in improving his life and ability to cleanse his body. The biggest concern at this point is whether Cannon’s extremely severe sensory issues will allow him to tolerate the presence of this external device on his body. All day, every day for potentially a very long time. And maybe even the rest of his life. So friends, if you could, please pray that Cannon will be able to cope with this button. And allow it to do what it does. It is almost exciting to think of the possibilities if he could just do this. The week after a clean out is filled with spontaneous language, increased eye contact, and joy. If this surgery works, could it be possible that that behavior would be our new normal?? Oh man! What a chance this is for reclaiming his life! Taking back some part of what Autism and its related issues have taken from my precious son. So, there it is. Me asking for help. Prayer. The power of which is amazing and knows no bounds! Thank you friends for being on this journey with us. For caring enough to take time out of your day to read this and support our family! We are blessed beyond measure by all of you! Thank you! Thank you! Thank you!
I just never imagined when we checked Cannon into the hospital on Monday, that we would be where we are tonight. Having to make the decisions we have had to make today…..
When I last updated you…..things weren’t going the way they usually do. IV’s and NG’s were giving us headaches….but we thought we had it all worked out. The NG has worked fine since we got the 2nd one put in. Cannon is working on his 3rd gallon of Go Lytely solution as I type but the x-ray is still not clear. So, he will have to continue with the medicine until he is.
However, the IV that we were so excited to find in his hand…..blew this morning but not while it was being looked at or drawn from. The nurse had just checked on it 20 minutes prior and commented that it wasn’t flushing well when she gave him his scheduled Valium dose through the tube. She got a call for another patient and said she would be right back to untape it and readjust. Well, in the meantime, Cannon got really, really agitated. He had been having a very hard time for the last day and a half but this was different. Our nurse had called the docs already that morning and told them that he needed some help. They said they were checking out and to let the day team handle it. Grrrr! But I reached a breaking point with him and hit my call button for help. He had been fighting me and screaming for too long and I was in tears and done. Which is exactly what I told the nurse when she responded. She went and called them again and came back to check the IV. When she removed the wrap and tape, she discovered that the 2nd IV in the coveted spot had blown. And all the fluid that had been pumped in during the last 20 minutes was pooling in his hand. I almost got sick when I saw it. His poor little hand was swollen to at least 3 times its normal size. And he was in pain!!!! We began treatment immediately which was Motrin, lots of saline soaked gauze wrapped around his hand, lots of dressing changes, and constant elevation for at least 6-12 hours. At bedtime tonight, his hand was only about half as swollen. I have been assured it will be better soon. 🙁
Backing up to Wednesday…..now that was a rough one. The “results” of the Go Lytely kept us up most of the night and he woke up for good at 2 a.m. And screamed ALL DAY LONG. I really can’t remember a time when he stopped for more than a few minutes. And unfortunately there was a doc on who wasn’t familiar with Cannon and who didn’t want to follow the plan we had in place. She thought Benadryl might help his agitation instead of Valium. UGH! Our valiant nurse fought all day and finally got her to listen but he was so far gone by that point that the small dose that was prescribed did very little. Mark and I were talking about it and we think it was actually the worst day we have ever had in the hospital with him from a behavior standpoint. And that, my friends, is saying a lot. Not fun!
So, when Thursday began with the IV infiltration by 7 a.m., I was not optimistic this day was going to be any better. But it turned out to be manageable thanks to the “wising up” that had occurred in the doctor yesterday. (Who was back on today.) The Valium was also back on schedule and therefore Cannon’s pain was better managed and he coped fairly well. Mark and I were able to go to a special lunch given by a group that supports chronically ill children and families. Our WONDERFUL nurses and techs watched BOTH of our boys so we could go. It was really nice to be away for a few minutes, discuss the next steps for us in a quiet place, and meet other parents in similar but different situations. There were mom’s in there with kiddos who’d had heart transplants, kidney transplants, cancer, and severe disabilities with related grave medical issues. It was so therapeutic to go through a guided discussion with them about how we are all coping in our various situations. We are so thankful we got to pop in. LOVE OUR CARING, BEAUTIFUL NURSES! I think it really relaxed me going into our surgery consult.
The surgeon came by at 2 and talked with us about the 2 (yes 2) potential surgeries. With the 2nd IV of the visit blown, the need for access via a port was very real. So, we have given into the idea of putting in that port. For those of you who don’t know what that is…..here is Wikipedia’s definition……
“In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”.
The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient’s hands free.”
Cannon will have surgery tomorrow around lunchtime to have this implanted.
The biggest decision of the day was whether or not to do the Chait Button that I mentioned in my last post. The one the only 3 pediatric surgeons in town had all refused to do a year ago. Because of their concerns about him pulling it out due to his severe sensory issues. We had really grown to respect the surgeon who we consulted with last year and were amazed at his “cut last” attitude when it came to Cannon. He wanted to test and biopsy him for all the 1% chance kind of things before he even considered it. And when it came to make that decision, he chose to think of Cannon, the person, and decline. I remember he said that it would be better for him to be in the hospital every couple of months for clean outs than for him to potentially live in constant, sensory pain, and for us to all live in constant fear or him pulling it out and needing emergency surgery. And we felt confident in his decision.
But due to the gravity of the situation we now face, they have flip flopped. They feel we have no other choice and really must go ahead with the surgery. Our G.I. doc spoke with them and told them that their is absolutely not one more thing to try. No meds, therapies, diet changes, etc. And we reluctantly agreed and consented to all of their wisdom. The comforting thing is that we are working on a couple of ideas that could make this thing go more smoothly. They are going to use a different button than originally planned. They feel that the spiral tube underneath the Chait Button is too risky and are going to modify a Mic Key Button instead. The latter are designed with kids in mind and will not have the severe surgical ramifications if they are pulled out. I will talk more about this closer to time. The other thought our G.I. doc had was to call a local company that makes prosthetics and orthotics and see if they can design and make us something that could go over it to prevent him from pulling it out. Or at least make it harder for him to do so. I got a script from one of the docs, called, and set up an appointment for them to come by the hospital for a consult tomorrow. It looks positive so far. Like they think it could happen. We will see.
Like I said before, I never ever imagined this week would play out the way it has. We could never have predicted the inability of Cannon’s veins to cooperate….now forcing us into the port. And that all the docs would change their minds and decide it was time to take the most drastic of measures and install the button. But it is what it is and we realize its time. Our knees are raw. We have prayed and received peace in this decision. It IS the right timing and the right move.
Now, that does not mean we are not sad. I struggled mightily this a.m. when his IV infiltrated. And right after the surgeon left. I don’t want this at all! But we put it in God’s hands, HE has answered, and we have to accept HIS answer. HE created Cannon and loves him. HE will protect our baby. I believe it with all my heart. In those sad moments today, I retreated to the melody and lyrics of this particular song. It came to me immediately in my grief. And encouraged me that it was okay to be sad. That even if all I can muster is a broken hallelujah…..that doesn’t mean that I am in the wrong or less of a Christian. I was created to need God and there is no doubt that I will need HIM now. The days ahead are so scary to me. We are implanting 2 foreign devises into the body of my 5 YEAR OLD. But I choose trust in this moment. I choose to believe in what I cannot see because I have faith. I have experienced God’s love and provision in the past and I know HE will not let me down now. Please enjoy this beautiful song and the message. Cry…its okay. But trust….because HE IS. God bless!
8 weeks ago, I was beginning to wonder if Cannon’s days of frequent hospitalizations for belly issues were over. Clear for most of the previous 5 months…..things were going pretty well. Not perfect, not without distress or problems, but far better than the early part of last year which had seen 5 admissions. But now that false sense of security has been crushed and we have entered into our 3rd hospitalization in the last 8 weeks. Yep, back in the hospital…..just as impacted as ever. And like our last visit…..with a new issue to boot. Elevated air fluid levels. There is no real rhyme or reason to why this is happening…..but it is causing us a lot of concern and we are feeling the pressure to re-evaluate things. But let me not get ahead of myself. Here’s the story of the last 2 days…..
I brought Cannon into the E.R. of our Children’s Hospital yesterday (Monday) morning after a little over a week of concerning behavior. He just could not stop crashing his tummy into things, scripting nervously, getting extremely emotion, and finally…..actually screaming over and over “Help me! Take me to the hospital!” A victory in itself even though the content of the statement is heartbreaking. He had myself and one of his ABA therapists in tears when he did this. Proud and sad tears….a weird combo. I packed us up quickly and brought him in. We are so well known down there now and proven credible in our predictability of impaction….that the doctor called up to get a room reserved before they even did the x-ray. And when the x-ray did come back….it didn’t take long before we were heading upstairs. The process was expedited due to the earlier phone call and because he had begun a massive meltdown over the reality of being back in the hospital. Even taking him to the E.R. playroom didn’t calm him.
When we got up to our room, we immediately heard there was an opening in the anesthesia schedule and they would be coming to get him very soon to start the process of getting the tubes in. Another wonderful development, as it often takes many many hours to get this to happen. And they were right, probably 30-40 minutes into admission, we were being wheeled into the PACU (Pediatric Acute Care Unit). He immediately became very upset and they had to go a different route with anesthesia because of it. The doc gave him a quick shot in his arm which should have knocked him right out…..but it didn’t. He requires more than the average kid his age and weight. No surprises there. So, they had to put the gas mask on him to finish getting him to go down. When that finally happened, they began the search for a vein for the IV. And came up short in both hands. Previously, there had been good veins there, but they were all used up. I watched his arms turn purple as both had tourniquets on for a while during the search. They abandoned the hands and a surgeon found one in his foot. Not an ideal spot but we had to have a vein. The surgeon then informed me that we were going to have to start thinking about a port in his chest for IV access as we are losing veins. A freaky but very real possibility in the near future if things don’t change fast. After that was placed and taped up, the NG tube went in with seemingly no issues. Recovery went as well as possible. I had brought my laptop down to work on an update to ya’ll while he slept it off. But when he started coming to, he uttered the name of his favorite show. Inspiration struck me and I typed the phrase “www.netflix.com” into my browser. I quickly got this show streaming via Netflix and watched as he came out of anesthesia better than ever. Even though he had been given a combo of anesthetics that I was warned, he would come out of badly. I now have a new trick in my arsenal! But this kid never allows himself to be predictable!
Late in the evening, an attempt was made to begin the infusion of Go Lytely solution and start the process of clearing the impaction. Immediately, the pump’s machine went berserk. And wouldn’t stop. So they tried to flush the tube and nothing was going in. A team of 4 came in a few hours later and an effort was made to untape the NG tube from his face and put the tube in further. Their theory being that maybe it wasn’t in far enough. When this didn’t work and we were all sweaty from fighting to hold him down, it was decided to suspend the attempts to salvage and wait for morning.
At rounds, the medical team assigned to his case decided that we were going to give him some extra Valium and then take him into the Procedure Room on the floor and try again to save the NG. They had discovered via an x-ray that it was “kinked” and thought that they could pull it mostly out and then re-insert…..possibly releasing the “kink”. But before they could even finish rounds….the IV’s machine began claiming over and over that it was occluded. A couple nurses came in, untaped it, and tried repeatedly and valiantly to save it. They noticed that the IV needle was also “kinked.” Which we were now realizing was the word of the day. And the IV blew. As did our hopes for salvaging the NG. We now had no way to relax him with Valium. He would have to go back down to anesthesia for a new NG and IV. And talk of the port possibility intensified. That was a really tough pill to swallow for Mark and I. The process is so tough on him and we just wanted for the infusion to already be going so we can get out of here sooner. But we had to deal and now, so did Cannon. We decided to make the best of our time waiting on Anesthesia and get out of the room. Cannon loves to just walk the halls…..telling me which direction to turn at each juncture. So, we did that with him snuggled on my shoulder until my back could no longer take it. Then, we resorted to sitting on the couch in the playroom and reading an entire “Treasury of Curious George” books with our favorite stuffed animal (ironically Curious George himself) close by. And finally, he snuggled with his Daddy and listened to a harpist pluck beautiful music for all the hall to hear. “Twinkle Twinkle Little Star,” “What A Wonderful World,” and “Bridge Over Troubled Waters” to name a few. Cannon relaxed so much he fell asleep. Townsend enjoyed it so much, he begged for and received a quick lesson from the accommodating harpist.
Around 2;30 Tuesday afternoon, we were rolling back down to Anesthesia. And thankfully one of favorite Attending Docs who really has a heart for Cannon, met us there and put the tubes in himself. Not necessarily standard procedure! Like I always say, we are so blessed to have such a loving and caring team here that truly cares about our son! The NG went in perfectly and flushed beautifully. And as I type, it is pumping Go Lytely solution through his little body. I have heard the insane belly gurgles to prove it! AND the victory of the day was that an IV was obtained in his hand! Halting the conversation about a port for now! Phew!
While we were downstairs, our G.I. doctor came by the room and talked to Mark. Or dropped a bomb, I should say. He said that we have to re-evaluate the possibility of putting in a Chait Button. Something we took a long, hard look at doing a year ago. And ruled out due to his insane sensory issues. This button, similar to that of a Mic Key feeding tube for babies, would be placed externally in his side. There is a spiral tube underneath that would directly access him colon. Every day, we would take him in the bathroom, open the button, and insert medicine. This would flush him out completely and could potentially solve all our problems. But the risks are astronomical! And the 3 pediatric surgeons in our city all said last year that they wouldn’t do it. That the risks outweighed the gains. I will elaborate more later but for now…..I have inundated you with enough info.
The last thing tonight comes straight from my husband’s precious heart. Today was tough emotionally. We hate that our baby had to endure another procedure and now is facing a very scary potential surgery. We are emotional and uncertain, intensely prayerful yet slightly broken over the situation. Mark told me when he returned from running an errand that he had heard this song on the radio. And it was exactly what he needed to hear today. Don’t you love how God does that? I pray you can absorb the reality of these precious lyrics and then let this song speak directly to your heart.
“There will be a day with no more tears, no more pain, no more fears. There will be a day when the burdens of this place…..will be no more….we’ll see Jesus face to face.”
When notification and details about our local 2012 Autism Walk first came out, I got really excited! In keeping with my New Year’s resolution to “do more this year,” I was determined to participate as we hadn’t been able to get it together in the past couple of years and do so. We wanted to participate in this walk as a part of the process of raising awareness for this epidemic disorder, to celebrate our AMAZING kiddo, kick Autism Awareness Month (April) off right, and also raise some cash for our local branch of the Autism Society of America! So, I dove right into planning our part in it. I sent feelers out to see if any of our friends would be interested in walking with us, set up my First Giving page to take donations, and began looking for a company to make team t-shirts. Well……then, the boys joint birthday extravaganza came and went, we had family in town for 3 weeks, and Cannon endured 2 seperate, unexpected hospitalizations with the need for recoupment periods after. And I got behind…… Really behind…..
I had wanted to get the cutest team t-shirts possible, really recruit for our team, and put my heart into fundraising. I had set a goal of $300 and I was no where close with 1 1/2 weeks to go until the walk. That’s when what can only be explained as a very modern miracle happened. And Facebook stepped in to help me out….big time. I sent out a status update with the link to our team’s sign-up page. And a few friends signed up. And then I began posting the link to our fundraising page about every other day. Which is when the generosity, kindness, and beautiful hearts of our friends and family began to blow me away! I was in total shock with how quickly and steadily the money began to pour in! All to benefit our local chapter of the Autism Society of America! I mean we went from $125 with a little over a week to go to pass our $300 goal. Then to 4, 5, 6, 7, 8, and $900! When things seemed to stall out at $970, I thought to myself……..”This is an awesome total…..but how great would it be to get to $1,000. What can I do to get us to $1,000?” So, I decided to make a flyer and a bunch of individually packaged baked goods and send them off with my hubby to work. With the hope of making $30. I made pound cake, chocolate chip cookies, butterscotch brownies, and zucchini bread. That fundraiser ended up bringing in $106! I was elated to just be over $1,000. Well, the giving didn’t stop there and our amazing friends and family helped us to an incredible end total of $1,565! A far, far cry from my original goal of $300! Thank you, thank you, thank you to all who made this happen and allowed us to make this great donation to the Autism Society! We are humbled, thankful, and truly blessed to call some of the most amazing people on this earth…..OUR friends and family! Love ya’ll!
The day of the walk was an early one. We are not morning people but we made it happen by eating breakfast in the car. The boys were really excited on the drive over about the “special walk.” We arrived and got ourselves and our team registered. We even had a family of friends that all of which…we weren’t expecting to show up! There were 12 of us in total to form “Team Cannon.” We were made up of our family, a few friends and their kids, and even one of Cannon’s therapists. I was amazed to find an online company who I contacted on Monday the week of the walk……..that was able to design, produce, and rush me t-shirts by Friday (www.customink.com)! So, our team was able to represent and look good!
After a former president of the Autism Society sang the national anthem, the run/walk was a go and we were off! Cannon’s therapist decided to run and meet up with us later. With 3 strollers among our group, we quickly assumed our position towards the back of the pack. Which wasn’t so bad because it allowed us to take it slow, enjoy time chatting with each other, and just go at our own pace. There were typical stops for bathroom breaks, snacks, and drinks along those 5 kilometers. I think each child did at least some time walking instead of riding. I even carried Cannon for a short stint as he was still not feeling 100% from his recent hospitalization and just needed a little extra love. It all just made the journey to the finish more interesting and quite comical. If you have kids, you know what I mean! When we crossed the finish line, there were several teams there that cheered for us and called out our team name! Thanks to our awesome t-shirts! 🙂 Enjoy these pics of our walk experience! For some reason, I was never able to get a picture of the entire team together. 🙁
Afterwards, there was a tent set up for a resource fair. So that the parents could visit and get info from all the local organizations that support families like ours. From ABA agencies, to conventional therapy groups, alternative therapies, diet resources, and social services. They were all there to give their shbeel, answer questions, and hand out pamphlets. There were also book tables and Autism awareness merchandise for purchase. But my boys were far more interested in the activities that were available! Mainly the train and jumping castles which are being stated here in order of importance to them. They rode the train far more times than I can count. And when we finally convinced them to try something else…..they made a beeline for those jumping castles. One was a traditional one and the other an obstacle course. The latter, which Cannon insisted on going in backwards upon penalty of meltdown. The boys also played some drums and painted, yes painted, a horse! Here are a few pictures to enjoy from all the fun!
One of the highlights of the day for me was a simple one. Cannon and I approached a table where they had large puzzle pieces made from construction paper available for the kids to draw on. You may or may not know that the puzzle piece is symbol of the Autism disorder. Because it is such a complex and puzzling condition. Cannon was told that he could do anything on the piece that he wished. He melted my heart completely by doing this………
This may not look like much. One word and a sticker. But to me, it is beyond beautiful. And a message for me that is filled with hope. I dissolved into his outstretched arms and loved on him like crazy! Some may think my little boy doesn’t get it. That he can’t bond or communicate. Well, it may look that way on the outside but no one can tell me he didn’t do what he did under that tent at the Autism Walk because he knew how I was going to react. NO ONE! My child is in there! And I will spend the rest of my life and all I have within me……trying to bring that to the surface for ALL to see. Mommy is coming to get you baby! Sweet Cannon, Mommy is coming for you!