20 days of crazy. 6/23/16

Dear Lexi,

I guess I’ll start this by saying I am terrible at updating this when I’m feeling emotionally drained. So, I’ll just have to go back to 6/3 when all the arm chaos truly started.

On June 3 we trekked up to Denver Children’s for what we thought would be 1 of 2 surgeries on your arm. I told you about the plan already so I won’t bore you with that again. The good news is that surgery went well. We were a little shocked by the device (external fixator) itself. For some reason I imagined it being almost flush with the skin. I mean, it makes sense that it isn’t, to allow room for swelling, but when imagining all this as a parent I think logical reasoning sometimes flies out the window and your imagination gives you the prettiest picture so you aren’t too freaked out.

I was so worried about turning the fixator to lengthen it because I couldn’t fathom how I would bring myself to inflict pain on you daily. More good news?! The “screwing” it, as you call it, doesn’t even hurt you. In fact, the only time the device seems to bother you now is when we take the bandage off and you have to look at it.

The first week of having the device was rough. We had to go in to get the bandages removed because your fingers turned purple while swelling up like sausages and the gauze scabbed to your arm. Then we had to go back the day after because they were concerned about the swelling. The next day we had to go back to see the surgeon and have XRays done. Since then, we have been seen once or twice a week, usually twice.

Yesterday we went down to Denver for them to measure how much more length they would need to give you and to have the fixator switched out because you were at the end of the first one. The problem is that they’re afraid to go any longer because your ulna is sitting as close to your wrist as they feel comfortable with, and your radial head didn’t pop back into place on its own. If they lengthen more the ulna can cause irreversible trauma to your wrist.

The doctor let us know that she has been thinking about it non-stop. We can either leave everything as it is and let it heal and say that this is the best your elbow will ever be. Or, we can operate and see if she can get the radial head to slide back in. While they’re in there, they will remove the pins and put a plate in and you’ll heal in a cast for at bare minimum 2-4 months. Then at 9 months to a year they will go in and remove the plate.

Here is the problem. If you didn’t have maffucci syndrome and you were going trough this because of a traumatic injury she would recommend the elbow surgery without question. However, because of the maffucci she’s not 100% sure the bone can go back. If they had had foresight and taken more extensive XRays when they initially did full body imaging in antipation of the skeletal issues, we would know, but because they didn’t, it’s a guessing game.

We were given the choice on what route to go. When I asked the doctor what she would do if it was her kid she told me that she had been thinking of that and was torn. She kept going back and forth. The risks of doing the surgery are: 1. It could not work. 2. We can create scar tissue which can inhibit range of motion. 3. It’s surgery and it’s scary. 4. It has a longer healing time for the bone. The risks of not doing the surgery. 1. The bone will never have the chance of properly sitting where it should. 2. If the bone hasn’t already changed to the point of not allowing it to go back in it can change. Now for benefits. Pro surgery 1. You could have a chance of having a properly functioning elbow. Against surgery 1. It’s not surgery.

We were given less than 24 hours to decide.

I was leaning toward doing the surgery because I think it is insane to have put you through this and not give you the best shot for a perfectly functioning arm, but it’s another surgery and has its risks and how am I suppose to decide what is worth it for you when you’re too young to really understand and have a voice in it. So, I called your daddy and my daddy and without hesitation they both confirmed what I was already feeling, that we have to give you the best shot that we can. We let the doctor know and they’ll put you on the schedule for next week.

While we were in Denver yesterday you met up with Dr. Garrington, your oncologist as well. They did labs and ordered an ultrasound that we need to schedule. We should have lab results next week

Being a parent of a child with medical problems is absolutely the most difficult thing I have done in my life. It’s so hard to make choices for another person regarding their body. I feel like I am putting you the most vulnerable place. I hope you know that none of this has come easy to us and that I pray for guidance and for your well being constantly. That being said, being the mom of a kid with medical issues is rewarding beyond measure. I am so thankful for the lessons it has taught me. Being your mom has literally made me a better person. You enrich our lives so greatly.

Here’s to a successful surgery and an easy recovery. I love you to the moon and back. Infinity times infinity.

Mom

XOXO

P. S. If you’re reading this can you say a prayer for my little princess?

And a huge shout out to Stacy, Morgan and KayKay for hanging out at appointments with me, keeping me sane and distracting Libby.