When Tyson was first diagnosed with sickle cell disease, I had no idea what that really meant for us. The doctors sat us down and went over the basics and gave us a really thick packet to read and that was about it. So, after reading the packet over a few times I decided to google sickle cell. What I found was heartbreaking:
- Pain crisis
- Acute chest syndrome
- Pulmonary hypertension
- Organ damage
- Leg ulcers
- Priapism (pain crisis in male genitals)
Complication after complication all because of the lack of oxygen in the red blood cells. A variation of the list above is what I kept seeing over and over, so I researched each one so I would be able to recognize an onset if it was to ever happen to Tyson or Jordyn. But do you know one thing I never saw AVN. I had heard some adult warriors talk about hip complications but I didn’t know why they had these problems. So, what is AVN?
-Avascular necrosis (AVN) is the death of bone tissue due to a loss of blood supply. You might also hear it called osteonecrosis, aseptic necrosis, or ischemic bone necrosis. If it isn’t treated, AVN can cause the bone to collapse. AVN most often affects your hip. -WebMD
Apparently AVN is pretty common in sickle cell patients because the sickled cells tend to block the blood vessels that supply blood to the bone. However, that was not something anyone ever told me. Nor was it something I saw on the long list of complications that come along with sickle cell. So, imagine my surprise when I took Jordyn to the hospital last Friday for a swollen knee and they told me that she had avascular necrosis in her left knee.
Back in December Jordyn had a pain crisis in the very same knee and I took her to the ER to get it looked at. They gave her some pain medicine and sent us home. Well, after her pain was gone, I noticed the swelling in her knee never went down. So, I took her back to the doctors. They told me it was just left over swelling from her pain crisis and it would eventually go down but this was normal for sickle cell patients. Fast forward to last Friday and out of nowhere her knee gets so big she can’t even walk on it. So, I rush her to the ER again, and they finally do x-rays and find out that the swelling is actually a bunch of fluid that has surrounded her knee because it is infected, not typical swelling from a pain crisis. The x-rays also showed that she has AVN on her knee.
They admitted us into the hospital that night and drained her knee. The next day she got an MRI done just to make sure what the doctors saw on the x-rays were accurate (and it was). But by Sunday her knee had swollen up again so they decided to do a biopsy on her knee. What they discovered was, the pain crisis Jordyn had in December must have caused the avascular necrosis and because that formed a weak spot in her bones the regular bacteria we have in our bodies caused an infection. And because sickle cell patients are immune compromised her body wasn’t able to fight off the infection.
The doctors felt the best plan of action was to put her on strong antibiotics and make a linear incision in her knee and clean out as much infection as they possibly could. Now prior to this Jordyn had never had surgery so to say I was nervous is an understatement. On Wednesday, Jordyn had the surgery and it went very well. She did have to get a drain put in her knee but that was removed two days after the surgery. That same day she started physical therapy.
We left the hospital Saturday evening and she is doing well. She does need a walker to get around for now and her recovery is going to be anywhere from 4-6 weeks before she is running and jumping like normal but I am more than confident that she will be fine.
THANK YOU ALL so much for your continued prayers, love and support. It really means the world to us.