Tuesday, January 18, 2011

Arthrogram Update and Doctor Ranting

Kenzie's Schedule:
Today we finally talked to the scheduler for the pediatric orthopedic surgeon. We are all set for the procedure to take place on Monday morning. We haven't received all the details, but it sounds like this is the general timeline:

7:30 - Kenzie has to stop eating breast milk.
9:30 - Kenzie has to stop all clear liquids.
10:00 - Check in at the Children's Hospital at Presbyterian/St. Luke's.
11:30 - Kenzie goes under general anesthesia and the procedure starts.
1:30 - The latest that Kenzie should be under general anesthesia.
?? - We take the little casted beauty back to our home.

Obviously Monday is a big day for the three of us. Please just say a quick little prayer for us before you head to work that morning. Here's hoping for a successful procedure and a quick recovery.

Mikey's Rageahol:
Clearly, receiving the news that your daughter has hip dysplasia is not an easy piece of information to swallow. The way we heard it made it much harder for Sarah and me. The first chance to catch this was during our stay at the hospital those first few days of her life. Nothing. The next opportunity came at her three day appointment in our home. The nurse practitioner who saw Sarah and Mackenzie did not catch it. Because of some concerns with Mackenzie's weight loss that first week, the nurse practitioner made a second visit to our house for a checkup at five days. Again, not caught. Our next appointment was with a doctor at two weeks. Looking back, this was our most disappointing appointment. The doctor did a terrible well-child check. It was so bad, he didn't even do a check on her hips. When we left the appointment, Sarah commented on how much of a joke the checkup was. Terribleness. When a baby is two weeks old, the tendons and ligaments in the hips are so loose that feeling for a dislocated hip is much easier. It would have been the perfect time to find the problem. Our next appointment was at two months. Here we saw our main pediatrician. As poorly as the last appointment went, we were most definitely not returning to the first doctor we saw. This doctor did a check of her hips, but at two months, the ligaments and tendons have tightened enough that diagnosing hip dysplasia is a bit harder (not to say that it shouldn't have been caught at this point).

Before Kenzie's four month appointment, Sarah had noticed that the fat rolls on her legs were different than each other. Uneven fat rolls is a sign of hip dysplasia. We also had noticed that she was only jumping on one of her legs when she was in her jumper. When we got to the appointment, we were asked if we were willing to see another doctor as our normal doctor was running very late. We agreed and saw our fourth provider. During the appointment, we brought up our concerns. The doctor took a quick look at her and informed us that it was only a developmental thing. She told us to keep an eye on it and check it again at her six month appointment. So we did. At our six month appointment, we saw our primary pediatrician again. Her fat rolls were still uneven. She was still favoring one of her legs. That doctor agreed with the previous doctor that it was a developmental issue. Thankfully, Sarah did not accept that answer. She demanded that some sort of check be implemented. After a bit of haggling, the doctor finally agreed to do an xray of her hips. Obviously the xrays showed what we had already believed   - she had a hip dysplasia.

For those of you who are playing along, let's recount. There were not one, not two, not three, four, or five, not even six, but seven different opportunities for them to find the issue. It finally took an aggressive physician's assistant and a belief in something wrong for the doctors to do something. That is where our anger comes from. Let's go through the same scenario, but instead of a medically trained mother, let's assume that the parents are Joe Blow and Jane Doe. They might not have noticed the difference in the fat rolls. They might not have noticed the jumping on one leg. They might not have pointed it out to the doctor at the four month appointment. And they definitely would not have pressed the issue at the six month appointment. They would have gone along with the "expert" opinions. They would have wondered why their child was not walking or why her walk had a significant limp in it. At that point, the most likely fix is surgery to get the femoral head into the hip socket.

Thhhhhhatt's not all, folks!! There are four characteristics that are commonly associated with hip dysplasia:
1) Genetics
2) The breech position at some point during the pregnancy
3) First born child
4) Female

Again, for those of you keeping score at home, let's go through these one by one.

1) Genetics - there is no history in either of our families, could not have been foreseen. (0 for 1)
2) Kenzie was breech during our 18 week ultrasound. (1-2)
3) First born - obviously she fits this criteria. (2-3)
4) Female - um, yes. (3-4)

As a baseball numbers geek, it is easy to see that she was hitting 0.750. Those are some great numbers in favor of her hips being all jacked up. Great work doctors.

Now you can see why Sarah and I have been so upset about this situation. Instead of diagnosing the dysplasia at two weeks and being strapped up the first few months of her life, now she will be forced to be immobile during formative developmental months. She will not be crawling on schedule. She will not be walking on schedule. In a year or so, this will probably all be behind us. It is just be a small bump in an incredible life of an incredible girl. It just sucks during the present.

Thanks for all the support, all the love, and all the prayers we have received over the last few weeks.
Mike (and Sarah)

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