Wednesday, October 29, 2014

LOVING THE PERFECT STORM...

Two years ago today Superstorm Sandy shattered the east coast. Lives were lost, homes destroyed and the once beautiful Jersey Shore, where we live, now looked like a impoverished third world country.

I remember the day very well. I was at the Children's Hospital of Philadelphia with Caden. He had just had surgery to "tie off" the upper part of his stomach to prevent him from refluxing and vomiting. As I lay in his bed holding him tight, all I could think about was what was happening a hundred miles away at home with the rest of my family. I maintained contact with my husband for as long as possible but eventually the phones went dead.

It was a very helpless feeling. I remember, at one point, talking to my husband begging him not to take Emily and Ethan out of our house. He was worried a tree was going to fall on the house and decided it would be safer to bring the kids to his parents who lived on the water. Not the most logical decision, but in the end everyone was okay and I understood his need to be surrounded by family as I so desperately wanted to be surrounded by mine.

We were lucky. The storm left us without power for over two weeks but we had no damage to our home. Caden made it home two days later and although we had been displaced, I was forever grateful to be together as a family again. 

Superstorm Sandy changed the face of the Jersey Shore forever. There are still people who are not back in their homes. People are still waiting for their government aide. Some continue to grieve the loss of loved ones. Although the storm has passed, many lives were forever changed.






A Different Kind Of Storm:


I would never compare Caden's life to Superstorm Sandy, but remembering that day has made me reflect on our journey over the past four years. Caden is our Perfect Storm. He is the most amazing person I have ever known; a perfect little boy who has forever changed my life. However, everyday is like waiting to see what the "storm" will do next.

For Caden, the storm will never end. We may sit in the eye of the storm for a while, but we know the winds will pick up again and the flood waters will eventually rise.

Today, we are enjoying the "eye". The winds are calm; Caden is "healthy". We are getting ready for Halloween and preparing to enjoy the many upcoming holidays with family and loved ones. I love the "eye" of our storm. It is so peaceful and tranquil. The skies seem brighter, the air fresher and the smells sweeter.

But no matter how much I enjoy the "eye", I am always anticipating the storm to commence again. Why? Because that is what happens when you love a little boy like Caden. Today may be good, but tomorrow is a whole other story. It can happen like that; so quick you forget the moment things went bad. Now I know this can happen in anyone's life but most don't go through each day waiting for it. I do.

I realized yesterday I am not alone. I was talking to a Mom at my daughter's dance class who has a son with Cystic Fibrosis. She, too, is waiting for the flood waters to rise. He has been "healthy" for a while and as much as she is enjoying his stable health, she is waiting for the storm to rage again.

Caden has not been  hospitalized since April and as happy as I am, I cautiously wait for the next tidal wave to hit. Especially this time of year when he is at a higher risk for respiratory infection and illness emanates every where.

Now this is not to say I have my bag packed and am ready to go. I refuse to live that way. But I do have to remind myself to be diligent and cautious. As much as I want to make Caden a part of everything, I have to remember he has a weak immune system and his body can not handle what a healthy child's can. Pros and cons of life's experiences have to weighed. He can not live his life in a bubble separated from the joys of childhood, but we must consider all possible consequences.

Caden is my PERFECT STORM. He is the most perfect person I have or will ever know. But when the storm hits, it can cause more damage than what can be repaired. Each hospital stay weakens his body, mind and spirit. As it does for all of us.

I know the storm will resurface sooner or later, but in the meantime, I will enjoy the "eye" with all it's beauty, simplicity and hope.






Thursday, October 23, 2014

WHEN THE LIGHTS GO OUT...

Since I began sharing Caden's journey with the world, I have been labeled a fighter, Supermom, Dr. Mom, a "special" Mom and an amazing Mom. Now as much as I would like to take credit for being all of these things, the simple truth is...I am really not.

Sure I put up my fists, throw punches and advocate like hell to get Caden the best care possible. I spend hours every day researching and reaching out to those I think may be able to help him. I have given up almost everything I used to do for myself for the sake of my children (don't all good parents do that???). I have argued with doctors, insurance companies, pharmacies, therapists and nurses. I have been up all night holding my son's head up as he's vomited. I have spent holidays in the hospital and have ridden in more ambulances and medical helicopters than most.

None of this makes me Supermom. It makes me tired, frustrated, discouraged, lonely and confused. I do these things because I HAVE to, not because I want to. I would much rather be setting up play dates, taking vacations and doing all those things I see other Mom's doing. 

What you see and what you read are who I want to be but not who I usually am. Yes...I try to stay positive, inspiring and upbeat. But in the end, when the lights go out, I am often broken and scared. 

Don't get me wrong, I love my life. I remind myself every day of the woman who struggled with infertility for ten years. I remember the pain of ever wondering if I would have children of my own. That dream came true. Sure, it was not exactly as I had planned, but I have my family and as beat up and broken as we all are...we are beautiful.




But there are times when I am too tired to fight the fight and just want to give up. I know I can't, but even if I could take just a little break for a while, it would be a nice relief. 

I am merely a shadow of who I once was and although I never want to be that person again, I sometimes miss her. She was a dreamer; a visionary if you will. The woman I am today can not see past tomorrow because Caden does not allow it. I have embraced the living in the now and am less disappointed because of it. I can not imagine what the future will hold, but I do miss dreaming sometimes.

I am frustrated. I am frustrated with waiting for the miracle to happen and am beginning to think it never will. This does not mean I am giving up, but simply learning to accept things as they are. It is sometimes easier to expect very little and be pleasantly surprised than to set high expectations and be disappointed. I was told Caden's cerebral palsy was mild to moderate and that he should be walking by age four. Caden turned four in August and can not roll over, let alone walk. However, when he learned to scratch behind his ear, I was super excited (and now have to keep his nails very short).





I am sad. I don't cry that much and sometimes wonder if I actually have run out of tears like my Mom said I would because I cried over everything as a kid. Or maybe I am just too tired to cry. There are some nights, though, where I just can't keep the tears from rolling down my cheek and hitting my pillow. As much as I know Caden is happy, I will always want so much more for him. 

I am jealous. Yes...I will say it...life isn't fair. I get jealous of the family with the decals on the back of their mini vans. You know the ones...proud of my honor student, soccer mom, the family of four wearing Mickey ears with the dog and cat (who for some reason are also wearing Mickey ears). Now I know that their lives aren't perfect and one of my creeds is to never judge because I do not know what is really going on in someone else's life, but for some reason I still sometimes get jealous. 

I am angry. I am not even sure at who? Many times I am angry with doctors, nurses, insurance companies, pharmacies and therapists, but usually I am angry at myself. There is a guilt in that I could not keep my babies inside me longer; that I was so miserable by the end of my pregnancy that a part of me wanted them out. Why couldn't I just hold onto them inside me a few more weeks? Would that have changed everything for my son? I remember I made a little poster that I hung across from my hospital bed when I was on hospital bed rest. It simply said "It is better I suffer now, so they don't suffer later". I read this all day every day. My suffering (I had a very difficult pregnancy) ended, but for Caden he will struggle (I will not say suffer) every day of his life.




I am tired. I am tired of not sleeping. Even when Caden does sleep through the night, I don't because I lay there waiting for him to wake up in pain or gagging and retching. I am tired of changing diapers. I am tired of drawing medications, pushing food into my little boys stomach and having puke buckets everywhere (every room in the house, the cars, his stroller, diaper bags). I am tired of the doctors, nurses, insurance companies, pharmacists and therapists. I am tired of checking my phone all day waiting to hear I need to go to the hospital because Caden is not doing well. I am tired of vomit. I am tired of rectal suppositories. I am tired of my house being taken over by equipment and medical supplies. I am tired of trying to find "big boy" gifts that Caden can operate (I think he has them all). I am tired of researching for answers. Yes...I am tired.

So you see, I am NOT Supermom. I am human. Caden, on the other hand, truly is a Superhero. He never complains, feels sorry for himself or wishes for more. He seems perfectly happy and content with the gifts he's been given. He is the selfless one. He is the inspiration. Caden, well deservingly, has won the hearts of so many around the world. He has given my life purpose. He's the fighter, the champion, and simply amazing. I am just the lucky Mom who gets to have him in her life.






Thursday, October 16, 2014

KEEP CALM... and CARRY ON...

I am a problem solver; there is an answer to everything; there is always a solution. One of my favorite shows is House because of Dr. House's ability to solve complex medical cases (and in one hour no less). If I had to do it all over again, I would have liked to have been a pediatric diagnostician; a doctor who takes medically complex, complicated children with unusual symptoms and finds a diagnosis. Yes...there is an answer for everything.

Or so I thought...

As I saw Caden's neurologist approach, my heart began to race. What if he tells us the worst? Why does he look so concerned? This can't be good. I made it back to the exam room, sat down and took a deep breath. "Okay Doc...I'm ready. Lay it on me".

So before revealing the "secret" of the genetic Exome Sequencing, Caden's neurologist asked if we had any other concerns. Other concerns? All I have thought about for the past ten days is this test and the phone call where I was told there was a mutation. What else was there?

THE RESULTS:

Apparently the Caden that so many doctors have said they have never seen any child like him before, is like no other child doctors have ever seen. He's not a one in a million child. He may possibly be (along with his brother) a one in the entire world child.

You see, the human body has approximately 24,000 genes which make up who we are. We fall somewhere between a chicken and a grape plant (look it up...a grape plant has more genes than us). So of these 24,000 or so genes, Caden has a mutation on one; the COL6A3 gene. This gene helps make up skeletal muscle and can lead to such things as muscle myopathy or muscular dystrophy, which are both progressive muscle disorders that often lead to a person's inability to walk.

This is what we were expecting to hear when we sat down with the neurologist. We anticipated hearing Caden had either something called Bethlem Myopathy or Ullrich Congenital Muscular Dystrophy. But that is not what we heard.

The good news is that the doctor does not feel Caden has muscular dystrophy based on a muscle biopsy he had in the spring. The bad news is that the doctor said what Caden does have, scientifically does not exist (or to quote him "is unpublished"). This means that there is no documentation of any other person in the world having the type of mutation Caden has.

Of the 24,000 genes, Matt and I have a different mutation on the exact same gene, the COL6A3. What are the odds? Well, according to the neurologist "It is just very bad luck." Caden has a mutated gene with the combination of two different mutations; one from each parent. There is no study on this; no scientific abstract; no known cases in the world.

So where do we go from here? Well, for one, I have nothing to Google. You have no idea how frustrating that is. I Google everything but when I Googled this mutation, nothing came up. I mean, literally, it said there were no matches. No matches in all of Google land. Impossible, but true.

Having a syndrome without a name means we have no idea where this will lead; no idea of Caden (and possibly Ethan's) future. Maybe that is good, but with not knowing we have no idea how to prepare.

The neurologist is trying to get Caden in to see a doctor at the NIH (National Institute of Health) who has studied this Collagen VI gene and has dedicated his life to the treatments of the syndromes associated with it. With much persuasion and a little bit of begging, we are hoping to travel to Maryland to see Dr. Carsten Bonnemann and hopefully gain a better understanding of what is in store for our boys and their future. In the meantime, I am working to get Caden in with the Neuromuscular program at CHOP and getting both Ethan and Emily tested for this mutation.

In other news...

Caden saw G.I. at CHOP and we, once again, discussed the fact that Caden is not growing. We have always looked towards his diet and the vomiting as the cause for his lack of growth, but when you get down to it, Caden has a very nutritionally sound diet. How many four year olds eat kale, spinach, quinoa and sweet potatoes on a daily basis?

The G.I. believes that Caden is not growing because his head isn't growing. The body grows with the growth of the head in order to keep the body proportionate. Caden's head circumference is that of an average ten month old, his height of the average 27 month old and his weight of the average 24 month old (Caden is 50 months old). In the past two years, his head has not grown at all, he has gained two pounds and grown three inches.


Caden Fall 2012


Caden Spring 2014 (same pajama's as above picture)


The question is why isn't his head growing? Now I don't expect his head to be as large as his brother's due to his brain injury and the fact that the "dead" part of his brain won't grow, but his head still should be growing. The neurologist is wondering if it is due to this mutation but assuming Ethan has it too, that seems unlikely being Ethan has a particularly large head.




Notice the difference in the head sizes even though they are identical twins.


Caden Fall 2012


Caden Fall 2014

It was suggested that Caden get a hand x-ray which can show the age of the bones. This test may confirm his bones aren't growing appropriately but will not necessarily explain why. I will be contacting the CHOP Growth Center to see if they would be interested in taking a look at Caden.

So, the mystery continues. Caden has gone from a medical unicorn to a medical swan (syndrome without a name). My medically complex, mystery child only becomes more mysterious. We still have no answers, but now there is nothing to look up; nothing to research. 

However, despite all of this, Caden continues to be the light of my life. His smile is my hope, his eyes my guide. When he holds tight to my finger, he is leading me. When he reaches for me, he is protecting me. In his own special way, he is telling me everything will be okay. 

It has to be...





Thursday, October 9, 2014

One Appointment... One Day... One Hour... DESTINY???

It has been a crazy week. A week of answers; one we already knew, one we thought we knew and one that has me scared. What we learn in the next week may bring us closer to understanding why our son is so "unique" but at the same time may determine his destiny.

Thinking back to every test Caden has ever had, I can rarely remember a time we received anything but a "normal" result. Now the parent of any typical, healthy child would be relieved with not finding anything but as the parents of a boy like no other, who is constantly sick and no one knows why...answers can, in some way, bring relief. We are often frustrated with all the poking and prodding our son goes through just to find there is nothing "wrong". In fact, according to his tests (with the exception of his brain MRI), Caden should be a "typical" four year old.

So when I got the call from Caden's neurologist last week with the results of his genetic study, I was expecting to hear the same thing..."The test came back normal". But that is not what I heard. There was, in fact, a genetic mutation that may be why Caden has many of the issues he has. I am not yet ready to go into detail on what we found out. I want to wait until we sit down and thoroughly discuss the results with the neurologist. But we may have an answer.


I thought this would bring the relief I was in dire need of; but instead my heart sank. Not only for what may happen with Caden but with Ethan as well. Caden and Ethan are identical twins so with any genetic mutation passed down from us, Ethan has a good chance of having it as well. 



This was the test I so desperately needed to come back "normal" and it didn't. 

So as soon as I got off the phone with the doctor, I jumped on the internet. Now I know that I shouldn't do that, but seriously, any parent would do the same thing. You see when the doctor told me about the mutation I wasn't initially concerned. It seemed to make sense in regards to his symptoms. But when I started to read about what the mutation could cause, I began to cry. It seems to be much worse than I initially thought. 

So here I am anxiously, yet cautiously, waiting for this appointment. The appointment that may determine, not one, but both of my son's fates. I am a mess.

It is hard not to think the worse. It is hard not to lose faith. My mind is spinning in circles trying to make sense of it all; trying to get a grip on things. As much as I need this appointment to be here, I never want it to come. Yes...maybe I will find out it is not so bad; that the internet doesn't know what they are talking about. Or maybe, it will be the worst possible scenario.  At least for now, I can hold on to what little hope I have left. One appointment....... on one day...... within one hour...... DESTINY.

I hope my mind and gut are wrong. I hope I am embarrassed by the outcome. I hope I have to apologize to my readers who may now be worrying right along with me.

PLEASE God...let me be wrong.









Monday, September 29, 2014

WHAT HE WOULD SAY....

I stopped at my usual a.m. iced coffee place and as I was paying for my caffeine, the woman behind the counter asked what Caden "has". She asked because I was wearing my Team Caden shirt; a shirt I wear with pride as often as possible; a shirt that has raised money for other children who are medically fragile.

I stuttered over my words as she was the first person to ever just ask me that. "What does Caden have?" There was no one word answer; no specific diagnosis. So there I was spatting off a bunch of symptoms as the line behind me began to grow. I could tell she was sorry she asked. But she did, so I felt she needed to know.

After I listed a bunch of medical terms I'm sure she didn't understand, I thanked her for asking me. I appreciated the fact that she wanted to know what was "wrong" with my son. All too often people avoid the topic of Caden or just look at me with those "I feel sorry for you" eyes; or they possibly even turn away.

As I continued my drive to work, I thought about what my son might say if he could. I envisioned him relaying a message for all who had no voice; for all the children the world does not understand; for all those who are "different"
.


WHAT HE WOULD SAY...


Please do not feel sorry for me...


I know it is hard not to because I can not do the things others my age can do. I can not sit up, walk, talk, run or eat, but I can feel. I can feel the breeze on my face and the warmth of the sun. I feel the love that surrounds me; the touch of my Daddy's whiskers as he kisses me; my Mommy's heartbeat as she rocks me to sleep. I hear my brother and sister's conversations and smile when they mention my name because I know they, too, love me.

I may not be able to do the things I want to but I am lucky because I am so loved. I know I will always be protected and my Mommy and Daddy will never stop fighting for me. They take me everywhere and do their very best to give me all of life's experiences. Because of this I am luckier than many, so please do not feel sorry for me.




Please do not be afraid to hold me...


I know I have many medical conditions which make my body more fragile than most but I promise I will not break. Holding me is like holding any other child. If you feel comfortable with me in your arms, I will respond positively towards you. You will feel my body move as I laugh. You will see me look up into your eyes with love. I know it may seem scary to you, but I want to be hugged; I need to be held. I want to know that you are not afraid of me. Please ask to hold me next time you see me. My Mommy and Daddy would appreciate it too.




Please talk to me...


My body may be broken but my mind is not. I understand you and although I may not be able to respond verbally, I want to. I have so much to say to the world and the more you talk to me the more I will learn so that maybe someday I will have a voice of my own. 

Please don't talk to me like I am a baby. I know that it is hard sometimes because I can only do the things a baby can do, but I am a little boy and I understand everything you are saying. And because of that, please watch what you say in front of me. Your words can hurt me, heal me, scare me or comfort me. They can make me laugh. They can make me cry. Your words can give me strength or break me down. So please speak positively to me, encourage me and let me know you love me.





Please let your children play with me...


I am not contagious. You can not "catch" whatever it is I have. So please allow your children to play with me. It is hard watching other children play without me. Even my own brother and sister play around me and not with me. Although there is very little my body allows me to do, I can play. I know it is hard but please try to find a way to make me a part of your world. I want to be able to do all the things you can do and maybe with your encouragement, someday can. Please don't walk away when I am near; walk towards me; hold my hand; try to make me a part of what you are doing. You may be surprised as to what I am able to do.




Please do not be afraid to ask questions...


My Mommy and Daddy are so very proud of me and always appreciate it when people ask about me. They always say they would rather you ask than walk away. I know it is sometimes hard to come up with the right questions to ask but that's okay. I don't mind if you ask what is "wrong" with me. My Mommy and Daddy know what you are asking and it doesn't offend them. What upsets them is when you avoid me or the topic of me. In their eyes I am a perfect little boy with a broken body. That's all it is. My body doesn't work right because my brain got hurt. Otherwise I am as typical as you or your child. Ask questions because knowledge will open your eyes to who I really am.





Please listen to me...


I know I can not put words together but I do have a lot to say. I say it with my expressions, my body and my eyes. If you pay attention, you can understand what I am trying to say. I may be saying "thank you" or "I love you". Or maybe I am letting you know I am in pain or am scared. Just like a newborn I have different ways of telling you my needs. Please do not assume you always know what is best for me. Try your very best to "listen" to what I have to say.




Please appreciate the little things...


I know it is hard sometimes and life can get pretty hectic, but please take the time to appreciate the little things. Appreciate your family, your friends and the world around you. Enjoy the beautiful sunrise, the sweet smells, and those "perfect" days. I know I do because I never know where I will be tomorrow. I have missed too many seasons and too many memories because I have been in the hospital. I have watched too many friends like me pass away. Life is so precious no matter who you are or how you live it. I may be limited with what I can do but I know how very lucky I am. I am lucky to have a family that loves me so much. I am lucky because I was able to go to school today rather than lay in a hospital bed. 

Yes... today, I am one very lucky little boy.







Wednesday, September 24, 2014

A DAY IN HIS LIFE...

*note: click on any word in yellow italics for more information

I thought I would take this post to write what a day in the life of my son is like. Consider this an educational post rather than an emotional one. It is important for Caden's readers to understand what all goes on in order to properly care for our son; to know what has worked and more importantly, what hasn't; to take a glimpse into his world and possibly to even see it through his eyes.

Caden typically wakes up on his own anywhere from 5 a.m. to 7 a.m. On those very rare days where he sleeps through the night and is still asleep when I wake, I panic. I jump out of bed and go to his room to make sure he is still breathing. That usually gets him up.

I can only imagine how Caden feels when he awakes. He is usually on his back which means at some point during the night he flipped from his side. Caden can not adjust himself to get comfortable. There is no tossing and turning for Caden as he can do very little on his own. Often we find him lying on his pacifier and there have even been times we have found him face down in his mattress. Because Caden has what is called emotional lability (Pseudobulbar Affect), he usually can not properly express himself when in pain or uncomfortable. We have found him with imprints of his pacifier on his back but because he doesn't cry or yell out to us, we have no idea.

So here Caden is lying in his bed, visually impaired to the point where his Opthalmologist said his visual acuity is 20/2000, waiting for us to get him.  Sometimes he "coo's". Sometimes he screams. But most of the time, he just lies there. I often wonder if he is daydreaming. Boy, I hope so.

When we get him he is brought downstairs and the chaos of the day begins. Whether it is his nurse or myself carrying out his daily routine, organization, timing and planning are the key. His blenderized food (which takes me two hours every weekend to make for the week) is heated up, his medications are prepped and his supplies are neatly laid out.

His morning routine usually takes anywhere from 45 minutes to an hour. Because Caden needs to lay flat when being given medications and food, I usually place him on his back on our living room carpet. With supplies close by, I get started. First, of course, his diaper is changed. Next, I give him his inhaler. Because he has bronchopulmonary dysplasia, he requires two puffs of Flovent twice a day to help keep his lungs clear and to help prevent  infection. When Caden is coughing or wheezing his Flovent is increased and we add Albuterol to the mix. This helps to clear his lungs and keep him out of the hospital. I then brush his teeth.

Next Caden gets his nasal spray (Ipatropium Bromide). This helps with congestion and to open up his lungs. Then his G-tube dressing is cleaned, an antibiotic cream is applied to the site to prevent infection and a dressing is placed around the tube.

Caden's dressing change materials

Now we get to the medications. Before Caden can be given anything in his G-tube, he must be vented. He does not like this but the alternative is severe abdominal pain and an increase in vomiting. When venting Caden, I must push on his stomach to try to get the air bubble out. This can sometimes take several minutes and cause him some discomfort.

Caden gets five a.m. G-tube medications:

Baclofen - Helps with his spasms due to cerebral palsy. It is a muscle relaxant.

Neurontin -  Used to treat neuropathic pain. In other words, it is a pain killer (similar to Lyrica)

Periactin - An antihistamine known to help increase appetite and extend the stomach to help reduce vomitng.

Bentyl - Treats irritable bowel syndrome

Zantac - Blocks stomach acid

Caden's medications minus his inhalers and PRN meds

Then, if Caden keeps the medications down with out vomiting, it is time to eat. 120 ml of a blenderized diet consisting of gluten free, casein free, whey free super healthy foods is pushed into his stomach via G-tube with a large syringe. The food must be pushed slowly in order to reduce the chances of him vomiting. After his feed, his feeding tube is flushed with water to prevent clogging.


Caden's food and feeding supplies

Caden has to remain flat for about a half hour which I know makes no sense but because of his dysautonomia he is more likely to vomit upright than when laying flat. If all goes well, I get him dressed.

Then he gets a break. If it is during the week he gets on the bus with his nurse and heads to school where he will have a jammed pack day mostly consisting of one therapy after another. Caden receives physical, occupation, speech and feeding therapy at school as well as outpatient after school. On average, Caden gets about eight to ten hours of structured therapy a week. This does not include what is done at home.

Caden, in his Kid Kart, making my day (with a little help from his nurse)

If it is the weekend or if Caden does not have school, his nurses will put him in either his gait trainer or stander to help with strengthening his legs. If tolerated, Caden can usually be in either the gait trainer or stander for up to an hour. Sometimes, Caden is brought up to his therapy room. This is a room in our house which was once an office but I turned it into a room full of very expensive home therapy equipment. 

Caden in his gait trainer

Now I know you may be wondering when Caden gets to play. Pediatric therapy, for those of you lucky enough to not have to go, is centered around play. Caden is not put on exercise machines or given therapy bands typically done in adult therapy. Caden plays on a ball, plays with toys, works with sensory stimuli, uses a computer to help learn how to communicate and goes on a therapy swing. Because Caden has difficulty playing on his own, he enjoys when his therapists, nurses or myself, engage him in therapeutic activities.


Caden's therapy room
We just started therapeutic horse back riding for Caden. Although not covered by insurance, it is sure worth it because not only does Caden enjoy it, but it helps to strengthen his neck and trunk, both of which are very weak. 

Caden loves horseback riding

Caden requires four feeds a day with three water boluses in between so at about 9:30, Caden gets 120 ml of water. Mixed in with his a.m. water are Mirolax, a probiotic, a multivitamin, vitamin D and calcium. At 10:30, Caden is fed again. Usually after that, he takes about a one hour nap.

He is given another water bolus at around 1:00 and a feed at 2:00. With his two o'clock feed he is given another dose of Baclofen, Neurontin, Periactin, Bentyl and Zantac.

Another water bolus is given at around 5:00 p.m. and his last feed at 6:00 p.m. At this time we also begin his night routine. Every other evening he is given a bath using his bath chair. He loves taking a bath which is wonderful because many children with cerebral palsy dislike bathing.

Caden's bath chair

A new dressing is applied to his G-tube sight and his inhaler is given. Along with the Ipatropium bromide nasal spray, Caden gets Nasonex in the evening. This helps with his allergies and congestion. He gets another dose of calcium and is given an evening dose of Zyrtec (allergies).

At around 7:00 p.m., Caden is given a rectal glycerin suppository. This is a necessary evil but without it, Caden would be up all night with intestinal pain. The suppository helps relieve gas and aid in constipation.

At around 7:30 p.m., Caden gets his bedtime medications. They are the same as the morning medications, with slight changes in dosing. In additional to these medications, Caden receives Melatonin (a dietary supplement to help with sleep) and valium (a controlled substance used as a muscle relaxer and to aide in sleep).

Many of Caden's PRN meds

As far as what has been done in the past, Caden has been on many medications that haven't helped (Bethanechol, Mestinon, Erythromycin, Reglan, Prevacid, Nexium and I'm sure many I have forgotten). We have tried all methods of feeding him (J-tube, pump continuous, every formula imaginable, gravity boluses and a pureed diet). We have altered schedules, increased medication doses, attempted various feeding positions and tried every combination of everything possible. We have yet to find what works best and because Caden does not have a clear cut diagnosis, we continue to play the guessing game.

So anyway, after a busy day, if I am lucky enough, I get to hold Caden against my chest as I feel him drift off to sleep. Very often, this is the first time I get to be with my son all day. With nurses, work, school, therapy, chores and two other very demanding four year old's, I often don't have the time to be with him. It saddens me that the most time I get to spend alone with him is when he is in the hospital. So when it is not my turn to put the other two to bed, I enjoy every second of his warm, tired, weak body against mine. I smell him like I would a newborn (I swear he still has that newborn smell); I rub his back; I feel his breaths; I listen to his heartbeat. 

And it is then...that I find peace



.






Tuesday, September 16, 2014

NO GOOD CHOICE...

Why is it when it comes to Caden's care there are never any good options? Just once I would love to hear a doctor say "Would you like the magic little pill that will make this all go away?" or "I can make your wish come true and take away his suffering." 

Now I know this is not realistic, but I am tired of having to consider options where any choice made has so many negative implications.

I was visiting a friend at the Children's Hospital of Philadelphia who's daughter is going through yet another round of chemo. She, too, said that there are no good choices. Her options, like mine, all ran the risk of doing significant harm in their effort to help.

So what choices were we given? Well...Caden met with the top general/thoracic surgeon at CHOP regarding his slipped Nissen and hiatal hernia. This is a surgeon who's care I have been trying to get Caden under for over a year and it is sad that it took his Nissen to go bad to get him to take an interest in my son. Nonetheless, Caden is now under his care.

He said that based on Caden's studies, the Nissen has slipped and he has a moderate hiatal hernia. The problem with this is that it will get worse and something needs to be done. What concerns him is that Caden is so very medically fragile. As I was explaining Caden's extensive medical history, the surgeon just shook his head in disbelief. He too, as so many doctors have before him, said that he has never seen a child like Caden.

So choice number one...do nothing. The surgeon did not recommend this as the hernia would get worse and permanent damage could be done.

Choice number two...have the Nissen reversed. At first we liked this option as we have never been happy with the Nissen. It was done to stop Caden from vomiting and it never worked. One month after the surgery, Caden began vomiting again and has continued to do so for the past two years. But then the surgeon explained that if we have the Nissen reversed, Caden would have to be fed via J-tube. This would mean no more blenderized diet, no food in his stomach and he would have to go back to continuous pump feeds. I never liked when he was J-tube fed. It is so unnatural and can cause damage to the intestines. It would be like taking ten steps backward and that is the last thing I want to do as Caden has taken very few steps forward over the past few years.

Last option and the one the surgeon said he would do if it were him...have the Nissen reversed and have a Thal done. This is very extensive surgery which could last over four hours. A Thal is when they take a flap from the stomache and fold up against the esophagus to reduce reflux. He said it would not stop Caden from vomiting but will help keep him from damaging his esophagus. On top of performing a Thal the doctor would stitch his hiatus to hopefully avoid another hiatal hernia.

We have chosen option number three but it comes with many risks. The surgeon said that he feels Caden is too weak for the surgery at this time. To quote him "Caden's growth chart sucks". He wants to see Caden gain weight before performing this risky surgery. He is also concerned with Caden's connective tissue disorder. He feels this could make surgery riskier in that Caden's tissues are fragile and can tear easily. The surgery can usually be done laproscopically but if he encounters problems he may need to "open Caden up" and this could be especially dangerous for a medically fragile child with a connective tissue disorder.

Lastly, the surgeon is concerned with Caden's heart. We find this interesting because we can't seem to find a cardiologist who feels the same way. Caden has an appointment in December with a cardiologist at CHOP who specializes in some of the cardiac issues we feel Caden has but we don't know if Caden can wait that long for surgery. Caden has severe Dysautonomia which has affected his overall well being. His heart races, he needs to lay flat all the time, his blood pressure is either too low or too high, he does not feel pain and he has trouble regulating his temperature. The surgeon feels these issues should be addressed before surgery.




So here we are having to make a decision with no good choice to make. Anything we decide to do involves many risks. It is our job as Caden's parents to do what we think is best but we are not even sure what that is anymore. I regret so many choices we have made in the past and I fear we may end up doing the same here. 

As it seems we will be moving forward with having the surgery in the near future, it is scary to think that this will be Caden's thirteenth surgery in just over three years. His little, fragile body already looks like it has fought many battles. There is not much room left for more scars. How much more can he endure? How much more does he have to endure? 

I choose the the granted wish.

I choose the magic pill. 

I choose to sacrifice myself for him. 

I choose the miracle. 




Wednesday, September 10, 2014

CHEERS, FEARS and TEARS...

Many of my readers have asked if I have taken a "break" from writing and I simply answer "Writing is my break". Life has gotten in the way and I have not been able to do what allows me the opportunity to escape in my head and share my thoughts. Yes, writing is my "break" from reality, my hobby, my "me" time and I have missed it, oh, so much.

Now that I am back at work, I have a lunch break again. As any stay at home Mom knows, there are no lunch breaks when you have children, especially very demanding, clingy (yet adorable) Pre-Schoolers. Most days this summer I felt accomplished if I did a load of laundry and felt like super mom if I actually found time to fold it.

So as much as I miss being with my children all day, every day, I do enjoy my time at work. It allows me to talk to other grown-ups, have a career, earn some money, listen to my music in the car and actually eat lunch without shoveling food into my mouth.

It has been an interesting summer with many highs and many lows. All in all, it was enjoyable. We took our first vacation as a family that did not involve other people traveling with us, a nurse or doctors visits. In June, the five of us went to Baltimore's Inner Harbor and enjoyed an Orioles game (or Oreo's as Emily and Ethan call them), the aquarium and the ferry back to New Jersey.



CHEERS:


Caden received a few new pieces of equipment this summer which has been both beneficial therapeutically and socially. In July he got his Upsee which allows him to walk while strapped to an adult (it's much like when you stepped on your Dad's feet to dance as a child). Although he does not like being strapped into it, once in, he smiles ear to ear and loves "chasing" his siblings and "kicking" a ball.


Just a couple of weeks ago, he received his floor sitter which allows him to sit up while being nearer to the ground than he is in his KidKart. Because of this, he can be closer to Emily and Ethan when they are playing on the floor.

For Caden's fourth birthday, he received a special needs bouncy chair which, similar to the ones for babies, moves with any movement made by him. It's a little big for him now but he does enjoy the bouncing motion.

Caden has been doing well in his therapies. His one nurse can even get Caden to take about thirty steps in his gait trainer. His other nurse has him moving forward a bit while on his belly. He is using his hands more and playing more than I have ever seen before. 

Caden started his new school and after working out some glitches, things seem to be going well. They moved him to a higher functioning class which we are hoping pushes him to want to do things. Caden is a hard student to place because cognitively and socially he is more typical but developmentally he is about where a four or five month old would be. Despite this, I do feel he will be more successful in his new class.

Caden began therapeutic horse back riding last week. This is something we have wanted to do for a long time but hospital stays and various other set backs have not allowed. He seems to enjoy it although we had to order him a helmet because no helmet would fit his tiny head.


When I last wrote, I spoke of a few tests and studies Caden was having done. Surprise... surprise... both his sleep study and glucose breath test came back "normal". Again, according to Caden's test results, he should be an Olympic athelete.


The "big" event of the summer was our trip to Nationwide Children's Hospital in Columbus, Ohio. We were thoroughly impressed with the hospital, it's design and architecture, the level of care and the physicians and staff. We truly felt like Caden was their only patient. Before going out, Dr. Moussa and her team (G.I.) had scheduled one test and a couple of appointments. Once we saw her, she scheduled two more tests and an appointment with the dietician which all took place in the two days we were at the hospital. Caden had a gastric emptying study (normal), an anal manometry (for the most part...normal) and an upper G.I. (NOT NORMAL).

What we learned from this trip is that Caden's Nissen Fundoplication has slipped and he has hiatal hernia (see FEARS below). We also tweeked his diet a bit to balance nutrients but for the most part his blenderized diet was "approved" and they seemed impressed by my ability to create such a well balanced one. Dr. Moussa started him back on Periactin (to expand the stomache) and Zantac (for reflux). He also began a new medication called Bentyl (for irritable bowel).

I am not a hundred percent sure, but I think Bentyl might be the greatest medication ever. Now it could be just a "honeymoon" period but now that Caden has started the Bentyl his vomiting has been significantly reduced, he is sleeping much better and seems to be in less pain. The past month we have seen a wonderful version of our son; one we wish could last but are slowly beginning to see the "honeymoon" come to an end.


FEARS:


I mentioned above the results of Caden's upper G.I. study in Columbus. So what does this mean? Well, according to Dr. Moussa, Caden needs surgery to fix the slipped Nissen and repair the hernia. The big question is what do we do? His G.I. at CHOP agrees the Nissen has slipped but it seems he does not feel we should do anything about it because Caden's symptoms have not gotten worse. Dr. Moussa feels the herniated part of his stomach may be putting pressure on Caden's lungs and heart and although surgery is not eminent, we should not wait too long.

We will be heading to CHOP to meet with the "best" general surgeon there. This is not the one who did the initial Nissen but the one who comes highly recommended. We are no longer settling for "sloppy seconds" and only want our son to see the very best. What we need to decide is whether or not to have surgery and if so, do we redo the Nissen or have it reversed.

Because Caden has a connective tissue disorder (which we did not know about at the time of the Nissen in 2012), surgeries may often fail and hernias can be quite common. Our fear if we redo the Nissen is that it will slip again. Our fear if we reverse the Nissen is that Caden will begin vomitng as much as he did back before the Nissen and if we do nothing, what could the hernia do to his heart. These are all concerns we must discuss with the surgeon.

On top of this, Caden's tonsils have been very swollen and red as of late. Back in the spring of 2013 he had an adenoidectomy but they kept his tonsils in. I am now trying to get him in to see E.N.T. at CHOP to discuss whether or not his tonsils need to come out. He is also going to need another eye muscle surgery in the near future. This could possibly mean another three surgeries in the next couple of months which would put him at fifteen surgeries at four years old.

TEARS:


Caden has a new symptom. He does not respond typically to pain. What this means is that Caden can bump his head and he will often laugh or not respond at all. Where this becomes concerning is that he has begun becoming self abusive. Although we do not think he does it on purpose, he is scratching his face and banging his head. This requires him to have constant supervision. We have to watch that his brother or sister do not accidentally hurt him. We have found him face down in his mattress at night. He does not let us know when something hurts which even new born babies can do to tell others they are in pain. This is often a symptom of dysautonomia and one I am very concerned about.

My children celebrated their fourth birthday in August. I am watching them grow and come into their own. This is a wonderfully, beautiful thing but something that makes me sad. Not so much because my children are getting older but because they are growing apart in the sense that, although they were all born at the same time, the three of them are worlds apart from each other.


Emily is a typical four year old. She is independent, mature and sweet. Now don't get me wrong, she has her moments, but we are very lucky to have such an amazing daughter. Because she is doing so well, I often expect too much from her and am afraid she is going to grow up too fast. I wish I had more time for just the two of us, and although I know she understands, I can see how much she loves (and needs) those "just about her" moments.



Ethan has had a rough summer. He has a lot of anxiety and fears. He is not sleeping at night and wakes up screaming for Mommy. He does not trust that I will be there and I can understand why. I have spent many nights in the hospital with Caden away from him and his sister. He has his own share of "special needs" and  I have not been there enough for him in the past. Ethan is my "two year old" who needs a lot of TLC. Despite this, he has the most amazing sense of humor and can be the sweetest boy.



As for Caden... he is my "baby". I remember when I first learned Caden may have C.P. and I went to the internet to find advice and support. One mother wrote that the one "good" thing about having a child with C.P. is that you get to hold onto your "baby" longer. Caden is my cuddler. He doesn't run from me, hit me, scream at me or demand me to do things. What makes him happiest is being held. Holding Caden is my "happy place". Although I don't get to do it enough, when he is in my arms I feel complete; I feel safe; I feel more love than I ever thought possible. 


It is hard to watch the others grow up while Caden, for the most part, "stands" still. Where the three of them were once on a level playing field, Caden has been left behind to sit on the "bench" watching the other two. Caden is part of everything we do. We take him everywhere. I fight to allow people and places to let him do things. But the world is not built around kids like Caden. All too often, Caden is left to watch the others and because I know there is a very well aware little boy inside his broken body, it breaks my heart.