Wednesday, January 13, 2010

The “Club Foot Brace Saga” and “Going out to eat”…

It’s not often that we combine topics.  Especially when the topics are not directly related.  However,  we wanted to fill everybody in on where we are with Mike’s brace but also tell everyone about our dining out adventure!

First the brace story.  We’ve been keeping an eye on the dark pressure point on the back of his left foot (it was a small purple/black dot about the size of a bb).  We started off by taking the brace off and checking it every so often – every couple of hours in the beginning then gradually tapering of to twice a day.  It was looking like the dark spot was getting smaller and we were happy about that.  However, the red spot which surrounded the dark pressure point looked like it might be getting bigger and more red.

Then, yesterday evening while we were getting Mike ready for his bath, we noticed that some skin had begun to peel away.  We call the on-call orthopedic physician assistant who instructed us to leave the brace off until we could see the orthopedic doctor.  We voiced our concerns (once again) about leaving the brace off for such an extended period of time.  However, the PA told us that at this point, losing the skin was a more serious issue than trying to correct his feet.

So today, we made yet another trip to the orthotics place.  And once again, the fine folks at Hanger made some modifications to his shoes.  At this point, his shoes have more modifications than your average custom Harley.  The guys at Hanger really have been great – especially Allen who has great patience with our "every-other-day” visits.  Today we asked him if this was a common occurrence.  He said that the pressure points were common, but that it was unusual for it to continue this long.  Usually, it’s one simple adjustment to eliminate the cause of the pressure and that’s it.  However, everyone is absolutely stumped as to what the actual cause is…

We also made a trip to the pediatrician today.  She saw the back of his heal and was fairly concerned.  She told us that the affected area was through multiple layers of skin and that it needed to be treated like a burn.  Now we get to apply Silvadene cream and a band-aid to his heal twice a day for two weeks.  She also confirmed that we should leave the brace off until we see the orthopedic doctor…

…and that appointment is tomorrow morning.  So we will know more tomorrow!

In the meantime, Mike has been sans brace since last night.  And today he has been in the best mood all day long.  No crying.  No fussing.  The perfect little angel.  We absolutely HAD to take advantage of the situation.  After all – the doc may instruct us to put the brace back on tomorrow!  We were deciding what to do when the stomach growl gave us the perfect idea – we’ll go out to eat!  We haven’t been to a restaurant for over 3 months.  And we know of this little “hole-in-the-wall” Cuban / Mexican place down the street that is one of our favorites!  So we packed everything up and headed out.  And I have to say, it never tasted so good!  Mike continued his angelic performance and had every waitress in the place making googlie eyes at him and he just smiled right back!

We came back home and it was time to feed Mike.  We are pretty sure that he liked the  chips and salsa too – even if it was somewhat processed by mom!

1 comment:

Jo-Ann said...

Gosh...I am leary to even post this, but I will because I wish someone had brought this up with Matthew in the beginning.

Matthew was a colicky baby. At least that is what we thought. He screamed 24/7. Unless he was asleep, which only lasted an hour at a time. And he would wake screaming.

Matthew was originally casted for a short period of time, deemed finished, then put into shoes and bar. We struggled for a very very long time with pressure sores, him crying, screaming, being miserable. He was a mess and I was too because I was completely exhausted.

When he was 4 m old, I thought his foot looked wrong (in hindsight, I was seeing the nerve damage that his orthoped missed) and I emailed Dr Ponseti himself.

From the pictures, Dr. Ponseti said Matthew's foot was not corrected and gave the the contact information for our nearest Ponseti trained doctor, 420 miles away.

I contacted that doctor and he agreed to see Matthew the following week. We got on a plane and went. Dr. Pirani agreed, Matthew's foot was not corrected, it needed the tenotomy and he preformed it right then for us. It so happened that a doctor from Calgary (our hometown) was visiting that day to learn more about Ponseti method. He asked if I wanted him to take over Matthew's care. I thought that was a good idea and agreed.

If you can believe it, that child stopped being colicky that day. So we wonder if his foot hurt so much and it was pain that made him miserable, not colic.

He was in a cast for three weeks afterwards, then went back into the shoes and bar without another pressure sore or complaint.

So, what I wonder is, are Mike's feet fully corrected? Is your doctor a Ponseti trained doctor? You can always send an email to Dr. Jose Morcuende or Dr Matthew Dobbs to ask their opinion. Dr Dobbs is amazing at getting back within a day and I hear Dr M is as well.

I don't want to scare you, but your experience is starting to sound like ours was in the beginning.

Hope the appointment tomorrow goes well.