Knees and Pees

I'm pretty terrible at coming up with clever and catchy blog post titles, so I turned to Justin for this one. :)  He came up with the title quickly and gave us all a good laugh which was much needed after a rather difficult day today.  Let me explain a bit...

First, I had a follow up with my orthopedic surgeon.  My knees have not improved after several weeks of twice-daily physical therapy.  I stood up wrong somehow from the kitchen table the other day so now the pain is more constant than before.  The orthopedist is getting me scheduled for an MRI soon to get a better picture of what's going on in my knee.  But he is still telling me that I would get the best results from a surgery to move my lower patellar tendon more medially.  It would be a complex surgery with a long and difficult recovery. 

My left patellar tendon is offset by 23 degrees, which doesn't sound like much, but compared to my right knee which is offset by 16 degrees, the difference is quite noticeable and seems to be the source of my problems.  So we'll just have to see what the MRI shows here soon in regards to surgical options.  We're having some problems getting the MRI scheduled after I told them about the 13 metal coils I had placed in my pelvis a couple years ago for my vein embolization.  But I'm really hoping I can get in soon and get some answers about my knees.

I can't manage daily activities very well without some knee pain, but Annie's knees are really in much worse shape.  It often makes me feel bad for complaining about my own knees at all.  Annie has been in a vicious cycle lately:

increased seizures,
which causes both of her kneecaps to dislocate,
which causes pain,
which causes lack of sleep,
which in turn causes more seizures. 

Justin and I have been holding her on the couch together in the middle of the night, both of us fighting against her seizures to prevent her kneecaps from dislocating, trying to calm her crying.  Her emergency seizure meds have been used twice just this week.  Needless to say, everyone is exhausted. 

Annie's right knee started dislocating several years ago and she had surgery to fix it, although it failed.  Her right knee has been dislocating ever since, although it hasn't been painful for her.  However, it is now getting even harder for us to put back in place.  And just recently, her left knee has started dislocating as well.  Her left knee is extremely painful when it dislocates, especially when it starts dislocating repeatedly throughout a seizure that may last 20 minutes or more.  Her left knee has become so swollen, the skin is pulled completely tight and all the tissues around her knee are hard.

Not sure this picture very accurately shows the severity of the swelling of her left knee, but you can tell that the bones that are visible in her right knee are not visible in her left due to the swelling.

Add on top of her knee problems the fact that Annie was also diagnosed with a UTI today.  (Thus the "Pees" in the post title.)  We suspected it all week, but it was difficult to figure out the exact source of pain since her knees are obviously painful as well.  While at the pediatrician's office, we talked to him about her swollen left knee dislocating and he recommended the same doctor who operated on her right knee several years ago. 

However, the pediatrician was so alarmed at the amount of swelling in her knee, and that the swelling extends even below her knee down her leg, that he has her scheduled for a doppler sonogram tomorrow to check for blood clots or problems with blood vessels from where her kneecap is dislocating.  So hopefully we'll have an update on that tomorrow.

The pediatrician will also be contacting our neurologist to see if Annie should have her seizure meds increased.  I don't necessarily think that's the problem--I think her increased seizures are due to her lack of sleep and the pain she has--but we'll see what he says too.

The idea of a baclofen pump was thrown out--often issues with high muscle tone can cause dislocations like this.  Since she's grown so quickly the last few months, they suspect that her muscles have gotten tighter as they have struggled to keep up with the growth of her bones (since she doesn't use and stretch her muscles like a typical child).  The baclofen pump is a device that would be surgically placed in the abdomen with a catheter running into the spine--like a permanently placed epidural--to constantly deliver baclofen to relax her muscles.  We're hoping to steer clear of this option--hoping that a possible bilateral kneecap removal would be less risky in the long run, but still not fun or easy.

Our Christmas break is turning out not to be quite what we had in mind, but we're hoping that we can get more answers soon--from my own MRI, from Annie's orthopedist, from Annie's doppler sonogram tomorrow, from the neurologist.  And hopefully we'll get her UTI cleared up soon without any complications from the antibiotics--which always make us nervous since her c-diff infection.  I hope to keep posting updates here as we learn more over the next week or two. 

We are all feeling overwhelmed, not just with Annie's health challenges keeping us worried and exhausted, but with my own knee pain and the added burden that places on Justin for care-giving.  He has been so wonderful to be helping out so much with the kids, going up and down stairs for me when I can't, doing Annie's transfers, and getting a few groceries on his way home from work. We appreciate all prayers for our family, especially for Annie.  Thank you!