Sleepy Lexie

The house got rather quiet this morning while I was working in the office downstairs.  I went upstairs to see where Lexie was and this is what I found:

Annie's Knee Saga Comes to an End

We finally got in to see our third orthopedist since moving here just a year ago.  He is known as being the best orthopedist here and we would have chosen him as our original doctor when we first moved here, but he's near to retirement and doesn't accept new patients.  But, with a referral from our other orthopedist who did Annie's knee surgery, we were able to get in.  He was wonderful and put our minds at ease!

We went to this doctor because after Annie's last knee surgery failed, we were told to see this new doctor who would be best at performing a patellectomy to completely remove Annie's kneecap.  So we have been planning for surgery sometime this spring and dreading the thought of it all.  But once we saw this doctor today, he thought it was rather ridiculous that we were referred to him for a patellectomy!  He said a patellectomy is absolutely a last resort operation that you don't enter into lightly.  He said Annie is NOT a candidate for a patellectomy because she's not experiencing any pain from her dislocating kneecap now.  Yes, it's still dislocating, but not with the force that it was before her last surgery.  So we have abandoned the knee brace and our plans for more surgery and are getting back to our "normal" life!  Her kneecap continues to dislocate, but it's not bothersome for her, so I guess we'll leave it at that unless it starts causing her pain.  So now Annie has a left dislocated hip and a right dislocated knee!  But she's happy!  And so are we!

Annie's New Button

I took Annie to see a new general surgeon here today.  For the past several weeks Annie has been having irritation around her G-button stoma site.  We took her to her pediatrician and even had a full abdominal sonogram trying to figure out what was wrong.  They couldn't find any problems, but I had that mother's intuition or gut feeling, or inspiration, or whatever you want to call it.... that Annie's G-button is probably just too small.  She originally had her G-button placed when she was 2 years old and even though we change it out ourselves every 3-6 months, we've been continuing to use the same size button for the last 6 years.

So I decided to take Annie to a general surgeon for him to determine whether she really needed a larger button size.  He was shocked when I told him she's had the same size button for 6 years!  He increased the stem length by 2mm (1.7cm 14fr) so we'll see if this helps relieve her irritation.

We realize most people don't understand how a G-button works or what it looks like, so here's a picture.  (There's also a picture of it in her tummy on Annie's FAQ page.)  So Annie has a hole directly into her stomach--called a stoma.  The balloon on the left in the picture above is the balloon we inflate in her stomach which prevents the button from coming out.  The port on the right is the part that is outside of her stomach on her skin.  So we just connect a tube to the feeding port and that's how we feed her--the fluid goes through the feeding port, down through the stem, and empties into her stomach at the base of the balloon.

This is the devise we replace at home every 3-6 months, simply by withdrawing all the fluid from the balloon that holds the button in, and pulling the devise out of her stomach.  So when we say that we got her a button with a longer stem, this means the balloon now sits further down in her stomach so it's not pressing up against the interior wall of her stomach so tightly.

Anyway, that was all just for FYI since we know people are always curious but usually too embarrassed or afraid to ask.

One Reason We Hate Seizures

Annie commonly bites her tongue during seizures and causes canker sores on her lip or tongue, but I don't ever remember her having two such huge cankers at the same time before! Cankers make her drool profusely, saturating a bib in about 15 minutes, and causing her to choke, gag, and vomit at night. She also can't suck on her binky when she has such large sores in her mouth. I am SO grateful she doesn't eat anything by mouth!

Annie's MRI Results

Annie had an MRI of her knee on Monday, so today I took her to the orthopedist to get the results.  Sure enough, she ruptured the tendon graft that was placed to prevent her knee cap from dislocating.  The tendon had actually broken to two places, but was still securely fastened to her bones.  So it wasn't the result of the doctor's ability to make the tendon secure, the tendon just wasn't strong enough to hold her knee cap in place, especially when she has seizures that make her muscles want to yank her knee cap out of joint.

So we're back to square one--exactly where we were 4 months ago before she had her first knee surgery.  The doctor doesn't suggest repeating this same procedure to tether her knee cap in place with a tendon graft because he expects that it would just fail again because of her strong seizures and her lack of a deep groove for her knee cap to sit in.  So we're considering a patellectomy to completely remove her knee cap. 

We were more excited about this procedure after our appointment with the orthopedist last week, but today we learned more about possible risks.  There's always the risk that the tendons that will stretch over the space where her knee cap was will rupture, making the recovery period very long with Annie's leg in a straight-leg brace 24 hours a day for 6-8 weeks.  There's also the concern that sitting with her foot out straight for that long again might further worsen her scoliosis. But we also learned today that when the knee cap is removed, pressure gets distributed differently in that joint which can affect the growth plates.  Often after a patellectomy, the patient's leg will start growing sideways at an angle below the knee.  Surgery is then required to alter or modify the opposite growth plate to compensate for the uneven growth.  It's not positive that this problem will even occur, but it's definitely a possibility.  And when it would happen is unknown too--it could occur within a year of surgery or it might not happen until Annie hits another big growth spurt closer to puberty. 

Before we met with Annie's orthopedist today, he contacted a different pediatric orthopedist who has the most experience in patellectomies.  After hearing about Annie, this other doctor suggested that she might benefit from a hamstring lengthening procedure to help reduce the amount of tension and strain on her knee without the patella.  Because the orthopedist we saw today has very little experience with patellectomies, he is referring us to this other doctor who would ultimately do the surgery together with our current doctor.  So hopefully we'll be seeing the new doctor soon and get some more answers and information so we can make some better informed decisions on how to best treat Annie. 

We know that we could always elect to do nothing, but we fear that these repeated dislocations will start to cause more pain like they did before her first surgery.  We also know from her last knee scope that these dislocations are causing damage to her femur that will become more painful.  We also aren't too excited about the idea of her needing to wear a knee brace the rest of her life--which doesn't even completely prevent the dislocations.  So we're really praying for inspiration on how to best treat Annie, keeping in mind that our goals for her are to be as happy and comfortable as possible and be able to enjoy her life to the fullest.  The big question... How do we do that when we can't see the future?  We obviously wouldn't have put her through the first knee surgery if we would have known it was going to fail, but we felt like that was the best thing to do at the time.  So please pray that we'll be able to know what will be best for Annie and help her to have the happiest life that she can.

It's amazing to me that in the short year that we've lived here, we've managed to now have 3 different orthopedists for Annie.  Our first is Dr. Scherl who has been helping to monitor Annie's scoliosis, dislocated hip, tight heel cords, and now her dislocated knee.  For such an involved knee surgery, Dr. Scherl then referred us to our second orthopedist Dr. Dietrich (considered to be a sports medicine doctor) who reconstructed her knee last December and who we met with today.  Dr. Dietrich is now referring us to our third orthopedist Dr. Esposito (who is also in Dr. Scherl's practice), who is known to be the best pediatric orthopedist in Omaha.

Now that we've been here a year, we counted to see how many doctor appointments Annie has had since we moved.  In just the past year Annie has had 66 doctor appointments, an average of one every 5 days.  How come it seems like we've had a lot more than that?

We appreciate all our friends and family who show such a genuine concern for Annie. Please continue to keep her in your thoughts and prayers as we make decisions in her behalf.

More Knee Troubles--Annie's Orthopedic Knee Appointment

We saw Annie's orthopedic knee doctor today for her supposedly last post-op appointment from her surgery in December to correct her painfully dislocating knee cap.  Little did the doctor know that we'd be coming today to tell him that her knee cap is dislocating again.  They did x-rays which showed everything to look good and in place (unless she bends her knee) but the groove that her knee cap sits in is so shallow that it is easily coming out. 

Because of the shallow groove and the fact that she regularly has hard seizures that yank her knee cap out of place, the doctor is suggesting two options: we can redo her previous procedure with a new tendon graft that will hopefully be strong enough to counteract her strong muscles during a seizure, or we can completely remove her patella.  Justin and I don't feel like repeating the same procedure again would be beneficial or be any more successful the second time around, simply because of factors we can't control (shallow groove and seizures).  So for now, we are planning on her having a patellectomy.  But before the doctor would schedule her for surgery, he wants to do an MRI next Monday to get a better idea of why the tendon graft failed.  We'll then meet with him on Wednesday to go over the MRI results and talk more about surgery.

From what he has already told us, the patellectomy will have a comparable recovery to her previous knee surgery--about a 3 month recovery period with her leg in a straight leg immobilizing knee brace for about 6-8 weeks or so.  Removing her patella will cause a slight loss of power to her lower leg, but since she doesn't ambulate that shouldn't be a problem.  She will however, always require a knee brace while standing in her stander.  The procedure will completely remove her knee cap, and then will require that the tendons connecting her upper and lower leg to the knee cap be connected to each other over the space where the knee cap normally is.  This is why she will need to have her leg out straight and immobilized for so long after surgery--bending her leg before those sewn-together tendons have healed could stretch then too much and cause them to rupture.  So we're in for another long and cumbersome recovery.  We're hoping to get her in to surgery as soon as possible to help her get fully recovered before the summer months come.

I feel so overwhelmed to be still dealing with knee problems--having one surgery fail and needing to start all over.  It's been about one year since her knee troubles first started... Last spring we noticed that Annie's knee was becoming very difficult to bend and would pop whenever we bent it.  Then over the summer months it started hurting her every time we bent her knee.  Then finally last August her knee cap became locked out of place and we had to take her to the ER to get it put back in place.  That is when we realized that all the popping we'd been hearing and the pain she'd been having was due to her knee cap dislocating.  I still can't believe we didn't somehow figure it out sooner.  However, she didn't have surgery on it right away last fall because she was having terrible sleep apnea and the surgeons wouldn't operate on her until after she had her tonsillectomy.  She had that done in October, and then we had to wait 8 weeks for her throat to heal before she could be intubated again.  She then had her first knee surgery in December and today's appointment was supposed to be her last follow-up.

I just want Annie to be happy and comfortable.  It's been such a difficult year for her--spending a lot of time recovering from surgeries, having to wear a knee brace every day, and experiencing a lot of pain.  I long for the days when I can just pick her up and not worry about hurting her or throwing her knee cap out of place.  It's been difficult if not impossible to hold her on my lap without her knee cap dislocating or making her uncomfortable, and I can't wait to be able to move her and hold her more easily again.  She is such a little trooper going through everything she goes through.  We love her so much and can't wait to get these next few months behind us and hopefully have a much happier Annie soon!