Archive for June, 2011

Update on Matthew

June 25, 2011

A whole week has slipped by since Matthew had surgery on is arm.  I’m not sure where the time goes sometimes.  Many of my friends and coworkers have asked how Matthew’s been doing.  I’ve been answering people whenever they ask, with vague promises that I’ll update something on this blog.  Like I said…. time flies!

I’m happy to report Matthew is doing quite well now, but it was NOT smooth sailing to get here.  When they checked us out of the hospital on Friday (the 17th), it was a matter of trying to keep Matthew’s pain under control.  By Sunday of that weekend, it seemed as though things were under control.  Things were looking good from a recovery standpoint.  But on Sunday night and into Monday morning, he screamed… a lot.  It seemed to Mary and I that he was in excruciating pain.  We were pretty clueless as to what was wrong – we had been giving him his pain meds still through that point.  It was so bad that we thought either the wire they put in his arm was out of place or that he might actually have a new break.  We actually took him back to the hospital in Richmond to get checked out.  The doctors could not find anything new or out of place.  But I do have this x-ray to show the class what his arm looks like:

Amazingly, Matthew was calm when he got this x-ray.  That’s new for him.  He knows what x-ray machines are, and he knows he doesn’t like them.  Somehow, though, I think that he knew we wanted him to be well.  But as I said, the doctor could not see anything amiss.

It was very frustrating for most of the week, as he kept screaming out, mostly during the night.  We assumed that he was having some side effects from his pain meds – nightmares.  I assume that the nightmares were waking him up, and he was jerking his broken arm in pain in his sleep.  Now that he’s no longer taking those heavy narcotics, the dreams seem to have stopped, and he’s finally getting some good sleep.  I have to say, what I’ve just described is mostly a guess on my part.  It’s not as though he can tell me!

Like I said at the beginning of this post, he seems to be much better now.  He’s is much more himself.  He plays, laughs, sits up independently, and of course watches train movies.  He sleeps much better than even a few days ago.  He’s even figured out how to get around a little bit by rolling around.  We’ll have another assessment by his orthopedist later this week, and at that point, we will hopefully have an estimate of when this soft splint comes off.

Season 2

June 18, 2011

I felt it was time to bring back the ole’ blog in light of the fact that we once again have a Ragnar relay team running to support the OIF again this fall. Believe it or not, I don’t like writing too much into the blogosphere, but I found that it was a pretty good forum to talk about A) Matthew, B) OIF in general, and C) Running. Plus, I had someone recently ask me what happened to that blog I used to write. So here it goes…

I have to start with Matthew. First, he’s the most important. Second, recent events are prompting me to write this blog. Back in February, Matthew had a second set of rods put into his right leg. If you’ve read my posts from last year, you may recall that Matthew broke his left leg in the fall and had a telescoping (Fassier-Duval, or “F-D” rod) put into his femur, and a rush rod put into his tibia. Well, in February of 2011, the same thing happened with his right leg, and the same surgeon in Richmond put an F-D rod in his right femur and a rush rod in his right tibia. Now, in June 2011, Matthew had finally been gaining some significant mobility, walking quite well on his own. Unfortunately, accidents do happen, and he took a fall this Thursday. He broke his right humerus in the process. It was a pretty clear cut fracture, and broken completely in two. It was clearly excruciating for him; he was probably having some muscle spasms around the area of the fracture. Pain management was quite an issue for the nursing staff. The same surgeon who’s performed surgery on both his legs saw Matthew again first thing on Friday morning. A quick, “easy” surgery later, and Matthew’s humerus was realigned with a long metallic wire from elbow to shoulder. He’s in a soft splint now instead of a full cast, and we are hopeful that recovery time will be short. His doctor was able to insert the wire without making an incision! Mary and I will be on pain-management duty for the next few days, giving Matthew medicines around the clock to keep him comfortable. This particular fracture was kind of bad timing; Matthew had only gotten his semi-annual dosage of pamidronate a week earlier (a drug to suppress natural bone metabolism). Generally, you want to space out the drug treatment from a fracture – it could slow the healing process.

It occurs to me that I have not spent a lot of time in the past talking about the OIF in general. So I’d like to change my own “advertising” a little bit and talk about what the OIF does. A quick introduction to Osteogenesis Imperfecta (OI) is probably in order. It is a very rare condition, affecting ~40,000 Americans. It’s most obvious symptom is brittle bones; hence, it is often called “brittle bone disease.” Those with the condition, such as my son Matthew, are subject to many, many bone breaks throughout their lives. It usually stunts growth, and can be very painful. At it’s core, OI is a genetic disorder in which the body doesn’t make enough of the correct types of connective tissues, particularly collagen. Here goes the engineer in me… think of the collagen as the lattice to which the calcium adheres to form the structure of the bone. With weak or non-existent collagen leaves the calcium with nothing to build on… it’s like concrete with no re-bar, strong but can crack very easily. If you’ve ever seen the movie “Unbreakable” by M. Night Shamalan, Samuel L. Jackson’s character “Mr. Glass” has OI. That’s probably the best known instance of it in pop culture. The actor – Atticus Shaffer – who plays “Brick” on “The Middle” has the condition in real life.

The Foundation serves as a focal point for families faced with this condition, who frequently haven’t even HEARD of the condition until their child is diagnosed at birth (or as in Matthew’s case, sometimes even before birth). Often, people don’t know what to expect. In my own personal experience, the OIF was very good about providing us with some educational resources right up front, and helping to get us in touch with other families battling OI. We still carry around the “OI for Nurses and Caretakers” manual in Matthew’s travel bag and first-aid kit. The foundation also sponsors a number of scientific studies surrounding the treatment of OI. Given its rarity, OI does not frequently garner grants and other funds to conduct research; the OIF seeks to supplement that research. The OIF also holds a bi-annual conference, that sort of performs those two major functions at once. Mary and I managed to attend the summer 2008 conference in Washington, DC… literally 3 weeks after a sonogram diagnosed the condition (Matthew wasn’t born until October of that year). The conference offers many different useful workshops… adaptive equipment, research progress, play groups for children, ad hoc medical consultation, and I even attended a session on how to upgrade the house for accessibility! (I haven’t DONE anything…)

So lastly, I am actively training once again for the Washington, DC Ragnar relay race in September. Last year, I ran with 11 other folks in support of the OIF and we called ourselves a Bunch O’ Nuts Exercising… B.O.N.E. I’m happy to report that all 12 of us are doing it again in support of the OIF! The Ragnar Relay series is hosted in several different places around the country throughout the year. It is a 200 mile relay race; each of the 12 runners is responsible for 3 separate legs of the race. And, let’s be honest, not all legs are created equal. Last year, yours truly ran a total of 16.5 miles; my toughest leg was probably my first, in which I ran up a rocky dirt road, up a mountain, and back down again for about 3.5 miles. I’d be lying if I said I ran it all. But I sincerely WANT to do better this year. My late night run was kind of fun actually, running at about 11pm for 6 miles. Then my last leg – another 6.6 miles – coincidentally took me near OIF headquarters in Gaithersburg, MD. My legs were fairly average compared to those of my 11 team mates. Some of them definitely faced tougher challenges than me. In all, we ran the ~200 miles in 31 hours and 23 minutes last year, well enough to place in the top one-third of the finishing teams. And no, there is no sleep 🙂 So, please consider taking a read of our team’s charity page at: http://www.oif.org/site/Calendar/1848303058?view=Detail&id=9502. As the summer progresses, and I continue to train with these folks, I’ll try and post interesting stories about our shenanigans to get ready for the race!

Thanks!!
John

PS – take a look at my wife Mary’s page: http://www.beadsforbones.blogspot.com/  She also writes about Matthew!