Sunday, May 23, 2010

Ty's Journey

If you're looking for funny, this post ain't it. Sorry. I'll get back to my hilarious pretty funny mildly entertaining posts once things have calmed down a bit around here. But I'm coming off a pretty intense weekend that began with Ty's "big" doctor's appointment, limped along in the reality of my insanely whiny children and my absent husband, and is ending with a filthy house and a critical lack of rest. To top it off, my husband's grandmother - an absolutely amazing woman who has been a profound spiritual influence in my life - is in her final days of hospice. I've done a lot of crying this weekend.

(I know. Not funny. But at least I gave you a fair warning.)

My focus at this particular moment, though, is my son. This post is mostly for friends who know about Ty's situation. Not many of you out there in blog land know what he's been dealing with, because I think I've only written one post about it. And that's mostly because his situation is what it is. He's not dealing with a terminal illness or anything as scary as that. He was just born with a birth defect that seemed to be, for a long time, one that we could deal with. Only lately, it's demanding more and more of our time and attention. You're welcome to read on, if you'd like. I'll describe the initial steps of Ty's journey pretty quickly:

When he was born, the nurse told me that it appeared Ty's left arm was badly bruised from the rather traumatic delivery. When I looked at his arm, it was bruise-colored from his shoulder to his middle finger joints. The "bruise" was still there two weeks later, and my pediatrician told me that it was probably a port wine stain. He sent me on to a pediatric dermatologist who waffled a bit on the diagnosis and sent me on to Dr. K (the doctor I referenced in my previous post and the man I hope to never, ever see again!). Dr. K didn't really care what it was called; he just wanted to get rid of the discoloration and went to town zapping it with a laser. After two sessions, I vowed to never go back.

At that point, Ty was almost four months old. His left arm was nearly twice the size of his right, was a dark purple / red, and was covered in numerous lesions. The next doctor we saw - a highly recommended pediatric plastic surgeon - called it a hemangioma, and said that the tumor was outgrowing its blood supply, hence the ulcerations. Ty underwent three laser surgeries with Dr. Joe. Although Ty didn't have to be awake this time around, Dr. Joe was much more aggressive, and each surgery left Ty's arm mottled with burn marks for weeks after the procedure. I finally told Dr. Joe that I needed a break.

Everything seemed fine for awhile after that. Ty's ulcerations healed and the discoloration of his arm was much less pronounced. I never noticed it unless someone out in public asked me what was wrong with my boy's arm. I'm not a fan of nosy people, but to keep things simple I said it was a birthmark.

After several months, we were back at the doctor for Ty's 2-year check. Dr. P, our pediatrician, paid special attention to Ty's arm. And during his exam, we both noticed a big problem at the same time: Ty's left arm was significantly longer than his right. Dr. P sent me back to Dr. Joe, who sent me on to Dr. Al, a hand and upper extremity surgeon. Dr. Al diagnosed Ty with an AVM, or Arterio-Venous Malformation, which is basically a tumor caused by an abnormal collection of blood vessels. His first goal was to determine if the tumor was "high-flow" or "low-flow." After a lengthy and sedated MRI, the radiologist told us that Ty's AVM is low-flow. Praise God. With a high-flow AVM, the result is more often than not amputation of the limb.

At this point, things suddenly felt much more serious. Obviously, Ty overcame a huge hurdle just in passing this "test": he won't lose his arm. But I'm beginning to realize that Ty's arm isn't just some birthmark or mild defect I can casually refer to as his "lucky fin" (the Finding Nemo reference I'd started using). We're facing some pretty serious stuff now.

If I haven't lost you yet, here's where things stand:

- Ty has a low-flow AVM. The tumor cannot be surgically removed because 1) there's a high risk of significant blood loss and 2) it's nearly impossible to remove the whole thing. Chances are that it will to grow back. All we can do is periodically "de-bulk" the tumor through surgery.

- Ty's humerous (upper arm bone) is growing rapidly due to the excess blood flow. It will continue to grow at an advanced rate, and there's nothing we can do. At some point, Dr. Al will make an educated guess as to whether or not the bone has reached it's adult size and will remove the growth plate. In the end, it's hoped for that Ty will have two, reasonably proportioned arms as an adult. But he will definitely go through an awkward period during his school years.

- We consulted with a geneticist on Friday, which was the "big" appointment I referenced earlier. There are three concerns we are facing now, as a result of this appointment. 1) We did a genetic screening to see if Ty has a predisposition for developing an excess of soft tissue. If the answer is yes, he will need to have routine ultrasounds to rule out any tumors growing in and around his abdominal organs. 2) Ty will be getting an echo cardiogram and a chest / abdominal CT to see if the AVM is in anyway connected to his heart. This is our big concern right now, since the AVM is on the left-hand side of his body. 3) Since Ty has passed out several times after hitting his head, it may be necessary to do an MRI of his brain as well, to make sure that the AVM is not in any way connected to the blood vessels in his brain. I'm not thinking about that right now. We'll cross that bridge if and when we come to it.

And that's where things stand. If you made it through all that medical jargon, I'm impressed. If nothing else, it helps me to process through where we've been and where we're going. I have plenty to say about where I'm at emotionally, but I think I'll wait to get into all that. I'll just ask that, if you feel so led, you would add us to your prayer list. I'm praying specifically that 1) there is no AVM presence around his heart and that 2) Ty won't have any more episodes of passing out. If we can avoid that circumstance, then we can skip the MRI of his brain and therefore all of that additional radiation. I have other prayers I'm praying, too, but I'll just start with those.

Thanks to all of you who pray for and ask about Ty regularly. He is such a sweet and happy kid, and a tremendous blessing to our family. As I've said so many times before, we just weren't complete until he came along!