No Great Options
March 5, 2015
I think one of the hardest things about raising a kid with medical issues is making decisions for his care that have risks, unknowns, and no real “good” options.
We saw an orthopedic surgeon this morning about Grayson’s dislocated hip. He had an X-ray done to see the current state of his hips, since the one we saw last week at the PM&R doctor was taken in December. His right hip is in fact completely dislocated (and by the reaction of the doctor as soon as he pulled up the image, it’s bad) and the left one is well on its way to dislocating as well. He said the left hip’s dislocation is “inevitable” in the next few months if we do nothing.
We have 2 options: Do nothing or do hip reconstruction surgery. Obviously, both options have pros and cons, but tonight, neither of them feel like good options. I’m really stressed and this whole situation seems somewhat bleak.
If we do nothing, the pro is we avoid surgery, and the risks that come with it. Thankfully, nothing we do or don’t do as far as handling him will make this any worse. And Grayson will never walk, so dislocated hips won’t have any bearing on how he gets around. Also, although we think they are making him somewhat uncomfortable, we don’t think this is causing him severe pain- yet. So if we don’t put him through surgery, at least we know that at this moment in time, he isn’t in pain.
The downside to doing nothing is that most likely, at some point his hips will cause him significant pain. There is a window of time where his hips can be “fixed” due to growth and development of the bones and muscles. So if we do decide to do the surgery, it needs to be relatively soon. If we gamble and wait, and then in a few years he starts to have severe pain, the surgery would not be able to put the hips back in socket, but would actually be to remove the part of the bone causing the pain. So basically if we want his hips intact for the rest of his life, it needs to happen soon.
If we decide to do the surgery, there’s an 80% liklihood that the hips won’t dislocate again and cause pain, although they will be closely monitored forever. We’ve caught this early enough that we’re still in the window where it can be fixed, which is huge.
The surgery comes with huge risks. It’s at least a 4 hour surgery- there would be two surgeons, one on each hip. This means 4 hours of anesthesia, which is a HUGE concern for a kid with a progressive neurological disease. Grayson would be in the hospital about 5 days, and most likely spend some time in the PICU. And with Grayson being medically fragile, there’s probably no way to predict what complications could arise. Then he would be in a cast for about 6 weeks, which logistically sounds like a nightmare to me.
As we were walking in the lobby of the building on the way to the appointment, we happened to run into Dr. K, Grayson’s Mito specialist/neurologist. We briefly filled her in and she said to email her after the appointment. I did, and her nurse emailed me back a few hours later saying Dr. K wants to meet with me in two weeks to discuss the options. Since the Mito/neurological component is such a huge factor, I’m so glad I’ll have a chance to talk this over with her.
I guess this decision is going to have to wait at least two more weeks, and I’m going to try not to go crazy obsessing over it. Sometimes I just get so angry about how unfair Grayson’s life is. He’s the sweetest little guy ever, and his body just keeps betraying him. I just pray that whatever we decide is the best decision for him, and his precious life.
I was just thinking today that I needed to text you and see if you'd had the appointment and how it went. I'm so sorry there are no good options. What a horrible place to be in as a parent. You have every right to feel angry that Grayson has to endure so much. I'm angry you both have to endure so much.
I hope that, with the help of his mito specialist, you come to a decision that you feel positively about. Sending love and light in the meantime.
I'm so thankful you had the chance to talk to his mito Dr and can go over the options with her in person. I will pray for wisdom and peace in your decision and that God gives you both quickly.
Praying for the Lord to guide you in every decision concerning Grayson. Yes, definitely talk to the doctors and get all the information you can. But in the end, I KNOW that you will make the best decision for Grayson. I do not believe there is a “right” or a “wrong” so don't even let yourself think that. Just keep putting Grayson's in God's hands, and He will show you what to do. I'm praying, for Grayson, and for you and your family! Keep your eyes on Jesus!! Blessings my sweet friend!
I hope the decision becomes clearer once you talk to his mito doc. In the meantime, gentle hugs to all of you.
Lots of prayers for you and your family… this is such a difficult decision, and one I'm sure not anyone envies. Best wishes as you figure out what path is right for Grayson. ((HUGS))
It's got to be difficult to also imagine what Grayson wants for himself. Praying that the doc might have a bit more to add.