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.