FIRST DO NO HARM...

One of the many problems with having a medically fragile, special needs child who receives private duty nursing is that you have very little control of your child's health care. Where I can give Emily and Ethan chicken nuggets and french fries for dinner occasionally, Caden's diet is doctor regulated and needs to be administered as directed by his nurses. There is no room for Mommy to do her thing and use that Mommy gut instinct to care for her child.

It is almost as if he is a child of the state (or at least the medical world). I can suggest ideas to medical professionals after doing hours upon hours of extensive research, but most doctors just brush my ideas aside with some scientific justification as to why my ideas are not possible. I understand they have years of education and experience on me but my son is unlike any child out there. Doctors have said it themselves. So if Caden is unlike any other child out there, isn't it reasonable to think something may be possible although science would normally suggest it shouldn't be? 

For example, when Caden had his last visit with his G.I. who has worked with Caden for the past three years, I suggested we take a look at Caden's Vitamin B level being many of my readers had suggested his symptoms resemble a deficiency. Caden's G.I. said that because he wasn't anemic he wouldn't have a Vitamin B defiicncy. Okay...fair enough, but since Caden is unlike any child out there isn't it possible he could have a deficiency without being anemic? It is a simple blood test that has never been done with the ten thousand blood draws Caden has had. Yes, I agree, it is most likely not the cause of many of his issues, but a simple test could either eliminate that possibility or show something easy to fix.

Another very frustrating example, is when I suggested to his one doctor the possibility of a casein allergy (Casein is a protein commonly found in animal milk). She said that his last endoscopy did not show any signs of Eosinophilic Esophagitis (an allergic inflammatory condition of the esophagus). Okay...but isn't it worth a shot  to tweek his diet to eliminate a somewhat common food allergen just to see if it makes a difference?

These are both very simple, harmless requests from Mom but you would think I was asking for a complete bowel transplant. So after much thinking, I have decided to take back control of my son's health. Well, at least the diet part. Now I am not a registered dietitian but I am a Health teacher with a Masters degree and more importantly, a Mom with common sense. So this weekend I am attempting to try a blenderized diet which will be gluten free and casein free. We will see what happens. Worse case scenario, we see no improvement and decide what to do next. But it is possible that we will see some improvement, particularly with Caden's intestinal cramping.

Yes...I am thinking outside of the box. I am starting with the least invasive, simplest "fix" and will move on from there. Who knows?

What I do know is that my little boy can not go on like this. We can not continue to watch him suffer. I am taking back my son and his health. I will use my motherly instinct and love; something no doctor with any level of education can do for Caden.

SERIOUSLY...ONE PARAGRAPH?

I thought I would take this post to do an update on how Caden is doing since his lovely five week "vacation" in hell at CHOP. I also thought that since so many of you have been so forthcoming with information and doctor connections, I would summarize Caden's medical journey but I then realized it was impossible to do that in one short paragraph as many of you have asked. Please understand, I have not forgotten to do this, but it is simply not possible. Honestly, one book might not even cut it. In his three short years on earth, I feel I could write volumes on what this little boy has been through.

In the next few weeks I plan on putting together a packet with a cover letter from me explaining Caden's medical "mystery" and asking, or better yet pleading, for doctors to take a look and see if they could help. I must keep the letter brief enough that they will be willing to read it, but interesting enough that they will be intrigued. I will include, with this letter, any medical records or documents that I think may help peak a doctors interest. My goal is to send this packet out to the doctors I have researched and many of the doctors and institutions suggested by my readers. Hopefully a few doctors will take the time to look through the packet and will be interested in seeing Caden.

So how is Caden? Well...it appears he has begun yet another tumble down the medical mountain. Not that he was doing great when he first came home from CHOP, but he was better than he had been before his admission. However over the past couple of weeks, we have watched his health begin to, once again, deteriorate. Without exaggeration, Caden has slept through the night (meaning at least eight straight hours) maybe once in the past three weeks. On the other twenty or so nights, we are up with him all night long. Most of the time he is in severe abdominal and/or intestinal pain which requires us to painfully vent him and give him additional glycerin suppositories. Sometimes this relieves the pain and he is able to settle back down, but most of the time the pain is only slightly diminished and we hold him all night to comfort him as best we can.

On top of his sleepless nights (and ours), Caden has begun vomiting more frequently again. On average, he is throwing up two to three times a day. Thinking about all of this the other day, I have estimated that Caden has vomited over 3000 times in his life. Not a typo people...3000 times. Doctors love to tell us that there isn't much they can do and that they believe the vomiting is neurological. Well that's great...at this rate if we are lucky enough to have Caden with us for a while he is on a pace to have vomited 30,000 times by the time he is thirty. Unacceptable!

Neurologically, Caden is preferring to be flat more and more. This is never a good sign as it usually means something isn't right neurologically. He is slowly moving back to the child who is almost catatonic when upright and energetic when flat. Upright, he is more likely to vomit, have myoclonic jerking movements, get severe hiccups, drool, have an upward visual gaze, become motionless and almost seem comatosed. As soon as we lay him flat he begins to be more vocal, kick his legs, lift his arms, become more alert and "perk" up. It's uncanny how he changes so drastically and so rapidly between positions.

Lastly, due to the increase in vomiting and pain, we have had to skip many of Caden's "meals". While we keep him plenty hydrated, we are concerned that this will lead to a downward trend in his weight. He is already way below the curve and he can not afford to drop any lower.

Although we are concerned with his health, we hesitate to bring him back to the hospital. Not because we aren't worried but because every trip to the hospital leaves him worse than when he came in. If doctors say they don't know how to help Caden why should we succumb him to the torture his hospital stays usually provide him. Of course if his health continues to decline, we will have no other choice but to bring him back to the hospital so he can be poked and prodded like a lab rat just to find out he is "normal" according to his tests.

Caden does have an appointment scheduled with CHOP's Pediatric Advanced Care Team. When Caden was in the hospital this spring and I was flipping out over the lack of quality care towards my son, the PACT team came to see me. I was very impressed with their apparent concern for not only Caden but for me as well. Two of the most compassionate doctors Caden has ever seen also work for the program so I am hoping that maybe they can help guide us as to what to do to give Caden the best quality of life we can.

We are continuing to aggressively pursue going out to Nationwide in Columbus, Ohio to see Dr. DiLorenzo (the top pediatric motility G.I. in the world) and Dr. Grubb (the top Cardiologist who specializes in Dysautonmia and Ehlers-Danlos) in Toledo, Ohio. Because they are the best it is hard to get in and their waiting lists are long but we are being aggressive (and a bit annoying) so hopefully we will get an appointment soon.

As I said earlier, I will begin putting this packet together next week in the hopes that it can be sent out to doctors all over the country by the end of the month. If you have any suggestions as to a doctor (pediatric) who may be able to help Caden, please post that doctors information in the comments. For those who need more information on Caden, please check out the following pages/posts:

THE JOURNEY

DIAGNOSES

LITTLE BOY WONDER

Again...from the very bottom of my heart, thank you for all the support, prayers and information in our quest to help our amazing little superhero.

HIS SMILE

When people ask me how Caden is doing, I put on my "smile" and usually respond with something like "Caden is Caden but at least he's home" or "Caden is stable" or if it appears the person doing the asking is hoping for great news, I might even say "Things are good".

But most of the time, they are not.

People ask because they care; because Caden has become a part of their lives. But most people, understandably so, do not want to hear every detail of Caden's day to day struggles; of how we were up all night trying to make his pain more bearable by venting his g-tube and giving him yet another glycerin suppository or holding his head as he vomits. No...people want to hear "Caden is doing well". And so...that is what I try to say with a "smile" on my face.

I "smile" so that others feel better, less awkward and more at ease. My "smile" forces me to stay positive; to be an upbeat, "you can do it", inspiration to other parents who have sick children. No one wants to see me moping around, wallowing in self pity...so I don't. Or at least I try not to.

Now this is not to say that my smiles are never genuine. I smile when Caden smiles up at me or when he laughs his notorious belly laugh. I smile the few times I get to watch him sleep peacefully wondering what he is dreaming about that allows him to be comfortable for the first time all day. I smile when we get to be a family of five with no nurses or therapists. I smile when I see Emily and Ethan hugging Caden or holding his hand. 

But often, my "smiles" are simply disguises hiding the fear, anxiety, anger and sadness that I feel as I watch my little boy's health decline. They suppress my need to lash out, yell, kick and scream. They allow me to temporarily bury my true emotions during difficult times or when I know acting on these emotions will only get me in trouble.

But when Caden smiles, it is always genuine and I honestly do not know how he does it. Children are honest; sometimes brutally honest because they can be and they can get away with it. They wear their emotions on their sleeves. They will tell you that you have gotten fat or you are going bald. They will scream when they don't get their way and cry when they want something. They do not care what others think. Children are genuine.

And so are their smiles...

So when I see Caden smile after just coming out of his fifth surgery in five weeks, I know it is genuine. For some unknown reason, Caden is happy. Caden smiles more than any other child I know. Why? Doesn't he know what's going on? Doesn't he know he can not do the things his brother and sister can do? Shouldn't he be angry or jealous? I know I would be. But he smiles. In fact, all the sick children I have had the pleasure of meeting over the past three years...smile. And they smile a lot.

Caden's smile is what keeps me going. It is his way of saying "Mommy...everything will be okay". It comforts me when my heart hurts and my spirit is crushed. His smile is the door to his pure soul and kind heart. It assures me that I am doing my best and he knows it. It is his way of saying "I love you Mommy" and letting me know that no matter what happens, everything will be alright.

Caden's smile is my hope.