Coen Medical Update 11-June-2008

Well, for the fourth time in his young life, the little man went "under" again today. We took Coen into the hospital this morning for the first of a potential series of steroid injections into his left hip (specifically, the left synovial membrane) with the intent being to control/kill the inflammation in the area.

The day started (as these ones always do) with him being cut off from food early the night before (not a big deal), then milk/nursing, and then water (big deals). Usually he wakes during the night from pain to "comfort nurse" two or three times. Last night somehow he miraculously stayed asleep from around 2 AM (the milk/nursing cut-off) to 6 AM (the time to wake up anyway). Prayers work.

When it came time for his procedure/"surgery", we were met by an army of doctors and nurses who did a great job of explaining the process and purpose. Specifically, our orthopedist (who I highly recommend) gave us a very thorough run-down of what she was going to do (arthrogram, range of motion test, steroid injection). This woman is becoming a huge fan of Coen and even acted somewhat like a proud parent as she told the nurses about his sign language skills.

The funniest part of the day was that they showed him the anaesthesia mask and told him that it would taste like "bubble gum" (which he's never tried). We asked for other flavors and they mentioned strawberry (he is addicted to strawberries). We turned and asked Coen if he wanted strawberry and he instantly did the sign for it which he learned the day before. Hilarious.

We later walked Coen to the door to the operating area and said goodbye. Fortunately, he did not cry while he was still in sight. I'm sure it started soon thereafter.

The procedure took just over an hour after which they called us back so we could talk to the doctor. I had flashbacks of sitting in that same room six months previous not having a clue what was truly wrong with our baby and having absolutely no clue as to the potential scope of the issue (we were told mild cerebral palsy at the time). This time, I felt far more confident.

When the doctor came in, she was in good spirits (always a good sign). She discussed the procedure in detail (she's thorough and analytical, which I love). Here are the highlights:

1 - When she tested his hip's range of motion while under the general anaesthesia, he actually tested more positive than any of us expected. The first test was moving his leg vertically (imagine lying on your back and moving your knee up to a 90-degree point). "At ease", he was contracted to 80-degrees, or nearly totally up. She was able to move him down to 40-degrees (zero being flat on the ground). The scary part of this is that he was under very heavy anaesthesia and his heart-rate was still spiking during this process (in other words, he was in some serious sub-conscious pain). She mentioned that they use a "quick hit" drug that is 10X more powerful than morphine. As a parent, you absolutely detest hearing these things, but what are the alternatives that work? It's such a bind to be in...

2 - Abduction test (imagine standing up and doing a jumping jack with your left leg going outward) - Amazingly, she stretched him to 60-degrees, which is his highest measurement yet (of course, this is being totally "under"). Normally, he's about 20-degrees (nothing really).

3 - Adduction test (imagine swinging your leg inward) - This test was far less positive, which is not surprising as he's never shown much motion in this direction. I think I remember her saying that he tested at 15-degrees is all.

She then moved on to the steroid injection, the first step being obviously to find the optimal point of injection. She had to take three different approaches to this as a result of the scar tissue build up around the joint capsule (apparently semi-confirmation of her "septic"/infection theory). She ended up having to go from the inner thigh area, sticking the needle all the way across into his joint capsule. This kid is going to be in some pain for a few days...

I don't remember everything that she said, but the other key points are as follows:

1 - The bulk of the scar tissue is around the joint capsule, which is making the hip "frozen" (to use her term). Imagine that the hip is supposed to have a conical range of motion and yet Coen is blocked from the bulk of this range because the joint capsule has so much scar tissue build-up that the space is restricted and the hip simply can't move (not to mention the enormous pain that this movement causes).

2 - The muscles showed signs of scar tissue as well, but not as much as she expected. She has always been very honest with us (one of many reasons I respect her) and has always led us to expect an eventual surgery to "lengthen" (by cutting) his muscles. Today, for the first time, she said, "perhaps we won't have to do that". Why not? Well, if the injections reduce the inflammation in the area, the joint capsule scar tissue will eventually break apart, increasing hip motion and thereby beginning to loosen up the muscles through use (long process with much rehab, but still!). His hip muscles have never been used, so right now there is the residual effect of them locking up. It's going to take a lot of protracted and painful stretching...

3 - She was able to get far more than expected steroid into the joint capsule (by concentration not volume) which is great as the concentration will hopefully aid the impact.

I'm sure I'm forgetting things here, but it's tough to retain all of this when you know your baby is waiting for you. So, after the (great) debrief, Tauni was permitted to go back and nurse (a by then very frantic) Coen. About 15 minutes later, I was able to go back as well after he changed rooms.

In a non-bragging way, I must say that this kid is somewhat of a miracle. After what he went through this morning, he has not cried for more than about thirty seconds all day long. Granted, he has some serious meds in him, but he is so used to living with pain and discomfort now that these things just do not seem to bother him (seem being the key word). It's incredible what he has learned to live with. He's far tougher than his Dad.

Well, it may just be another baby step, but it's a step forward nonetheless. :)