Archive for July, 2010

Return from the hospital

July 19, 2010

Well, this blog has really been established to write about my progress towards training for the big relay run this fall as we raise funds for Osteogenesis Imperfecta. I’m not going to speak to the training and running is this post; I’m going to talk a bit more about the condition, and more specifically Matthew.

I imagine that most people reading this are already familiar with the Young family’s recent goings-on, but I’ll try and summarize here anyway. Matthew’s been cruising for some months now. It’s been scary because we know how bent his left femur has been. You can see it in this X-ray which was only taken about a week ago:

Obviously, all his leg bones are bowed, but this left femur in particular is bad, with about a 90 degree bend in it. In fact, it was this same bone that showed up on sonograms while Mary was still pregnant with Matthew that allowed them to diagnose the condition.

Last Saturday, Matthew was cruising around and fell. This X-ray is actually from the ER trip trying to find a break. Doctors really couldn’t see anything – they’re not to blame, his bones are really not dense (“osteopenic”, to be technical) and fractures sometimes don’t show well on x-rays. What I did find frustrating about that ER trip was that the doctor categorically refused to prescribe something for his muscle spasms. The spasms are a result of the shock to the nerves and muscles of having bone stuck into them. When the ER discharged us, they did splint his leg and told us to follow up with an orthopedist on Monday. Well… that weekend, Matthew really didn’t get any sleep. The spasms kept waking him up and causing him pain. Mary and I slept in shifts to stay up with him.

On Monday, we saw an orthopedist in Richmond who is familiar with OI, and in fact has performed rodding surgeries on our friends and mentors who’ve coached us through living with OI (the Quann family). Dr. Sharps (the orthopedist) immediately recommended that we should rod Matthew, at a minimum, his left leg. He was a man after my own heart with his logic:

1) That leg clearly needs a rod. It’s GOING to break, badly. If we can prevent a major break, we should
2) Matthew’s got what apparently is a minor leg break right now. Let’s rod him while he’s down anyway.

The risk was that they might be unable to put an F-D rod (Fassier-Duval rod) into his femur which would be preferred over a Rush rod. First, it will actually expand with the child’s growth – to some extent anyway. Secondly, it’s less invasive to put the rod into the child. A rush rod is basically just a solid piece of metal that will likely have to be replaced in 1 – 2 years. The F-D rod is preferable because it is theoretically a longer period of time before Matthew would outgrow it and it would have to be replaced, but it requires a thicker bone. But the risk of “only” having a Rush rod in his femur was ultimately OK for Mary and I – we felt that something had to be done for Matthew before he had a big, complex fracture.

I need to make a shout-out to the OIF here – the charity for which my relay team is raising funds. Mary was diligent about reading some literature we got from them years ago and re-read the chapter about rodding surgery. (Apparently the rule-of-thumb is that when a bone has a 40+ degree bend in it, it’s time to have surgery). We were also pleased to see Dr. Sharps had actually written a chapter about OI elsewhere in the book. But without the OIF providing these kinds of resources, the decision to rod now or wait until later might have been significantly harder.

So, this past Friday, we took Matthew to St. Mary’s hospital in Richmond for surgery. Handing him over to the anesthesiologist was probably the hardest thing I’ve ever had to do as a parent. But both the anesthesiologist and Dr. Sharps took all the time Mary and I wanted to have our questions answered before taking him in. I was happy with both their bedside mannerisms.

The surgery itself took only about 2.5 hours. The nursing staff was very good to call from the OR, so we received regular updates, which I really appreciated. Dr. Sharps even came to see us in the waiting room when it was over to show us the X-rays of the rods he inserted (which I put in here). He had to cut Matthew’s femur and tibia to insert the rods. What was great and surprising (to me, anyway) was that he only had to cut each bone once. Despite concerns ahead of time, he was able to use and F-D rod on his femur – which is great news!

We were sent to the PICU waiting room to wait for Matthew to come from recovery. So we saw him relatively quickly after the surgery was over (although it didn’t FEEL quick). They put a spica cast on Matthew’s left leg, which effectively locks all his joints – hip, knee, and ankle – in place. The spica is difficult. Diapering is hard. Transportation is hard (in fact, we had to get a new car seat – which will be an insurance debacle, I’m sure). Moving him around the house is hard. We ultimately had a two night stay in the PICU while they monitored Matthew’s pain. We were discharged on Sunday after the staff was confident that he no longer needed heavy narcotics for pain.

Matthew will have a follow-up appointment this coming Friday. They’ll see how well his bones are adhering / healing to the rods as well as how well the osteotomies (deliberate cuts in the bone) are healing. From there, they can determine just how successful the surgery was, whether there were complications, and hopefully estimate how long he’ll be in the cast (maybe 2 or 3 weeks?).

In all, we feel the surgery was successful. Mary and I were incredibly anxious leading up to the surgery, and feel incredibly relieved that it’s over. What’s important is that Matthew’s left leg is now straight! And when it heals, he may be cruising even better than before. Or (God help us) walking! I guess time will tell that, too… but I am very hopeful now.

Some of the decisions we need to think about now are whether or not to rod the right leg, too. His tibia probably qualifies based on the 40 degree “rule”, but his right femur is relatively straight. Although, historical x-rays show that it is gradually bending more and more. We will consult Dr. Sharps on Friday’s follow-up regarding this.

A lot of people have been concerned about Matthew, prayed for us, and wished us well. So to all of you: Thank you! Matthew seems to be much more himself then when he was in the PICU. He’s bright and alert and has already figured out how to roll over and move a little bit in his new cast. I will always be thankful that there are friends and family out there who truly care.

John

PS – if you ever find yourself in need of surgery or bone repair: There is a new substance known as “kryptonite”. (http://www.kryptoniteusa.com/) It sounds like science fiction – but it essentially liquid bone. A surgeon can use this substance to DRASTICALLY reduce healing times. Scientists harvest amino acids from castor plants and mix it with calcium and potassium. When this is put into a break or surgical incision, the body’s bones will treat this substance as its own bone and ultimately grow new bone into the kryptonite. Mary and I declined (for now) because it’s relatively untested with OI patients.

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Training on the Road

July 5, 2010

There were two things that happened in the last week or so that are relevant to our relay team’s preparation.

First is a comment about my own preparation. I spent the last week out of town – in San Fransisco if you’re curious. When you’re on the road, it’s very hard to do anything “normal”. I know I didn’t eat healthy at all – every meal was out to eat. BUT – as I was packing at the beginning of last week, I insisted on taking my running shoes and some gear to run at least twice. That wasn’t a small feat considering the size of my suitcase, and the need for clothing for five full days.

Apparently, the desire to run twice ended up being a bit optimistic, but I am happy to say that I got one three mile run in on Tuesday. Three miles is completely a guess, which I make based on the length of time I was listening to some music. I am a little disappointed that I only ran once in the span of a week. If I’m going to be serious about getting ready for the relay race, I’ll need to do better than that. Now that I’m back in VA, I intend on getting several more miles in this week. In fact, it is my intention to aim for six miles tomorrow morning.

The second piece of news is that our team has arrived at a real name: B.O.N.E. – Bunch O’ Nuts Exercising. I like the double-meaning for the bone condition while acknowledging that there is a certain level of crazy needed to do this run!

And lastly, I have to put in a bit about Matthew. There’s been nothing serious on the OI front, and as my grandmother used to say “no news is good news”. He has been a bit sick this week, but we’ve had our doubts. We were briefly concerned he might have a “hidden” fracture in a rib, or possibly in his jaw. He definitely seems to have some mouth pain, but he also cries out when he coughs. So… all that said, he’s been recovering since I returned from the west coast on Friday. He also got a pair of orthopedic shoes this week that have a lift on his left leg to account for the difference in the length of his legs. He’s still learning to get around in them.

I hope that you’ll keep reading these posts – which I hope become more regular updates on running and Matthew – and cheering us on while we get ready!

Check out our team webpage! Bunch O Nuts Exercising