Our MRSA Saga

When we were in the emergency department for the broken femur in April, they did a routine nasal swab to look for MRSA. They do that now before every surgery. Oh, he had to have surgery on his femur, by the way. So, it turns out that he DID have MRSA! Before the surgery, they gave him vancomycin for the MRSA. They admitted that he probably got MRSA because of his many hospital visits!

Then when he was in the hospital, all the nurses and doctors who came into the room put on disposable gowns and gloves. The trash can in the room was full of these gowns and gloves by the time we left! But when we went home, I asked about it, and they said there was nothing we needed to do about MRSA. I then called and emailed a few people from the hospital when we were home, and both of them said that it wasn't a big deal, that many people have it, etc. I argued back and forth, and she even had someone from the group that developed the hospital's MRSA guidelines email me about it. All he did was copy and paste the same old information. But this didn't satisfy me because my son was about to have another surgery, this one with an external fixator around his foot. And basically 100% of these get an infection. What if he got MRSA in it???

The orthopedic surgeon did agree that we should try to make sure the MRSA was gone. So over the summer, I applied a nasal medication to both of his nostrils twice a day for 2 weeks. Then he was tested for MRSA again. The result was negative! He then had to be tested again at least 24 hours later to make sure it was really gone. This time rather than driving an hour each way to have him tested at the hospital, I tried to make it easy on us and took him to his pediatrician, which is only 15 minutes away. They had us go in the back red QUARANTINE door. It was kind of spooky going in there, wondering what other infectious diseases we would catch by being in that area of the hospital. I was not too pleased, either, that the entrance was not accessible, with a full flight of stairs we had to go up. Thankfully, Jordan can go up stairs on his crutches (although he did break his arm in four places a few years ago going up stairs!).

Well, it looked to me that the physicians assistant did not do the nasal swab correctly. But the pediatrician called within a few days and said the results were negative! I was so relieved! But sure enough, when the results appeared on the hospital's website, they looked strange, not at all like the previous results. After emailing the PA for the orthopedic surgeon's office, the PA told me that the pediatrician's office had ordered the wrong test! So it was back to the hospital for yet another test! Argggh!!!! Finally, after a few days, the results were in--negative for MRSA and MSSA. FINALLY! This took five months. But it goes to show you, make sure you or your child is tested for MRSA before surgery. Not all hospitals do this yet, but when they do, they say it cuts down on infections. I just wish they would treat each patient as an individual and not just copy and paste information that having MRSA is JUST FINE!

Vascular Issues

My son is doing great and just turned 14 and started high school! I do often worry that I am missing something--some therapy he should have, some specialist he should see, some test he should have. It took me almost a year to convince the doctors to have him get a scan of the arteries in his legs. His old orthopedic surgeon mentioned to me that my son is missing some of the arteries in his legs, and no one ever further looked into it. I thought it was important to finally find out more about it because he was going to have surgery on his foot. Then he broke his femur, which is a whole other story, and the foot surgery was postponed.

So in the meantime, he has had the scan, but I haven't been able to find a vascular surgeon who will see him. His orthopedic surgeon did give a disc of his scan to HER vascular surgeon, who said she would see him, but I'm having a hard time making an appointment with her! I have called many times, and they never get back to me! It turns out that there are no pediatric vascular surgeons; it's just not a specialty at all. And it's hard to get a doctor who sees adults to see a child! Well, my son was 13 when I started calling them. Now he's 14, so hopefully he's getting closer to an age when they will accept him as a patient!

Update

It has been years since I've posted, and in the meantime, we have made a lot of progress with iSACRA. We now have more than 1000 members on our Facebook page and have a lot of great discussions there. I am happy to say that I think we are really helping people. I know how hard it was having a newborn with this syndrome I had no clue about, and I hope that we are easing some new parents' fears through our group.

We have had a few meet-ups as well, are now recognized by NORD (National Organization for Rare Diseases), have started paying for postage when members exchange medical equipment and supplies, have created a flyer describing caudal regression syndrome and iSACRA, and much more! It has really been a dream come true for me. When my son was born, I wished there was such an organization as I have now helped to create!

Introducing the International Sacral Agenesis Caudal Regression Association

I haven't blogged in quite a while, but in the meantime, the International Sacral Agenesis Caudal Regression Association (iSACRA) has been founded. I'm proud to say that I am a founding board member of iSACRA and helped get it started along with several wonderful, very dedicated people.

On June 6, we will be celebrating our second anniversary. Our Facebook group now has almost 650 members! And next week we are having our first really big fundraiser, a 5K in Virginia! I think there are exciting things ahead for iSACRA, and I look forward to continuing to get to know the members.

Great New Site on Caudal Regression Syndrome

Jessica, who has CRS, recently started her own site with information about CRS. It is a great site with lots of first-hand helpful information. She has a goal of forming an organization on CRS as well. Check out her site at Caudal Regression Syndrome Association.

I especially like her Recommended Articles, which include an article for parents that would really be helpful early on as well as articles on walking for kids with CRS, how to handle staring, having a support system, etc.

She also has information on sports, wheelchairs and other equipment, and how to meet other people with CRS. All around a very helpful and great site!

TLC Program on Woman with Caudal Regression

TLC recently featured an hour-long show on Joanne Fluke, who has caudal regression syndrome and participates in ballroom dancing. Here are some links.

A blogger at FWD (Females with Disabilities) responds to the TLC program and to other media coverage of Joanne.

One of the sensationalist-type stories like the ones FWD responds to above: story in the UK's Mirror

To see Joanne dancing firsthand, see this Groovability video.

Serial Casting Results

The serial casting went really well! His feet are a lot flatter, and his right foot, which was going in, is straighter. Also, he is not getting the red spots on his feet that he was getting from his braces because they fit him correctly again! It is amazing that we could do this in just 3 weeks. Here is a before and after photo. I never take them from the same angles, ughhg, but these two are really close for comparison.