Wednesday, March 26, 2014

Dylan's 2nd Surgery :(

We went to Amputee Clinic yesterday and received some not so great news...Dylan will be having surgery soon. We just need to figure out when works best for us and call and schedule the surgery to take place in the next 4-6 months. Yikes! So not looking forward to this.

We knew this was going to be happening. We've known from the beginning that he would be needing "maintenance" surgeries in the future but were told that we would wait until his issues became a problem before doing any surgery. Well, they are becoming a problem as of late. He has been complaining a lot about the bottom of his stumpy hurting and in the past week or two has asked at least once, if not twice, a day to take his leg off because it hurt too bad. :( time it is.

In this surgery they will be doing three things:

1. Femur - His femur (thigh bone) is externally rotated, which puts his knee on the side of his leg instead of on the front. I'll attach a picture that I took today of his knee below. of the things they'll be doing is cutting the femur towards the top and then rotating his femur internally to line everything up and then putting some plates and screws in there to hold it all together.

The picture is taken of him sitting, me holding his leg straight out and looking directly straight down on to his leg, where his knee should be. Yesterday at clinic the doctor marked where Dylan's knee actually is on his leg. The line was starting to wear off, so I drew it back on on the computer so you can see just how off to the side his knee is. Isn't that crazy? 

This is an x-ray of his hip. The line drawn on is where the doctor will be cutting the femur, then rotating it, then screwing the bottom portion of the femur back to the top (head) of the femur. Sounds painful, right? :(

2. Tibia - The second thing they will be doing will be another tibial osteotomy because his tibia (shin bone) is bowing again. They did one of these at the time of his amputation, but it has bowed again, so this time they will be cutting the tibia like before (in a few different places), putting it back together like a puzzle to make it all straight again, and this time they will put a rod in his tibia that will stay there (last time the rod was removed after 6 weeks) to hopefully help avoid it bowing again.

3. Calcaneus - The third thing being done during this surgery is re-shaping and re-positioning of his calcaneous (heel bone). The type of amputation that he had (a Boyd...if you were wondering) leaves the calcaneus and puts it at the bottom of his tibia. The benefit of this is better weight bearing since it has the heel bone and pad attached to the bottom and it gives a little extra length to the residual limb, which for Dylan's case (his leg being SO much shorter than normal) was something that he could use since it gives him more residual limb to work with in a prosthesis, etc. The downfall is that the calcaneus is a bone and bones grow, so the calcaneus continues to grow and can make the end of a residual limb too bulbous, so they do "maintenance" surgeries to reshape the calcaneus. We knew this was something he would deal with at some point. The other downfall is that the calcaneus can migrate. And Dylan's has done both. It's getting too bulbous and his calcaneus has migrated back a bit (most likely a result of the bowing in the tibia) so instead of it being at the bottom of his stumpy, all his weight is being put on the tip of the calcaneus...which is what is causing him so much pain right now. So the surgery will take off some of the calcaneus to fix the bulbous problem (which you can also see in the xray below how his stumpy bulbs out in the back towards the left of the picture) and then they will reposition the calcaneus to the bottom of his tibia where it should be.

This is an x-ray of the side of his leg. I marked where his calcaneus is with a red line and the yellow arrow is pointing to right where all his weight is being put when he is wearing his leg and walking, which as you can see is right on the tip of that calcaneus (instead of on the bottom/flat part). It's crazy to see the inside of EXACTLY where he points on his stumpy when I ask him where it hurts and seeing...oh yep, the xray shows exactly why it hurts right there. Poor guy. 

So there you have it. :) We knew that his amputation was not the only surgery he was going to have. We've known that all along. With Fibular Hemimelia it's very common to have knee and upper leg/hip issues. Most of these surgeries are considered fairly small and "maintenance". I think the femur surgery is more than we were ever hoping for, so that's disappointing, but the other two we knew were always possibilities, if not inevitable. It's sad and hard to think about going through surgery and recovery again, especially now with a child who LOVES to be very active, but we will all get through it and I'm sure Dylan will figure out ways to get around and deal with his situation for the time being just like he did last time. OH...the good news is that we originally thought that since he was having this surgery on his hip/femur where they will be breaking bones, etc. that he was going to have to be in a half body cast from his hips down his leg...which would have been miserable. BUT, they told us yesterday that he will just be in a cast similar to his last one (which is from mid thigh down his leg). They said that since there will be so much hardware in there holding his femur together and since kids heal so fast, they don't worry about anything going wrong and it's better to give him as much mobility as possible to keep him as active as possible. Thank goodness! We will be given a walker to help him walk around where/when he can since he won't be able to wear a leg for over 6 weeks (6 weeks in a cast and then a couple weeks for his new leg to be made). And then we will have a wheelchair as well to be able to wheel him around longer distances outside of the house and stuff. SO...recovery is not going to be fun, but it will be much more manageable than we initially feared. That makes me feel ever so slightly better. :)

I just have to keep reminding myself that as hard as it's going to be to send our son into surgery AGAIN and how daunting going through recovery again sounds...this is all to IMPROVE Dylan's quality of life. It's going to make him more comfortable and more functional. And that is ALWAYS our #1 goal. And just like last time...we will be lifted up and carried through this next stage by leaning on our Savior, Jesus Christ. We literally could FEEL all of your prayers said on ours and Dylan's behalf and that truly got us through some very hard times and I know it will get us through the hard times ahead. So thank you in advance! :)

OH...want to hear the drama that happened today? Our leg guy made a few small adjustments to Dylan's leg yesterday in an effort to help alleviate some of the pain he's having right now until surgery can fix it all. He also suggested wearing a special sock that goes over his liner to see if that would help suspend his leg better, putting less pressure on the bottom of his stumpy. So I tried it this was SUPER tight but he was okay with wearing it around for a little bit just to see if it would help. After about 30 minutes he started complaining that it was too tight and hurt really bad. So I went to take his leg off and COULD NOT get it off. I tried and tried as hard as I could and felt like I was going to rip his whole actual leg off. His knee was looking all funny and I was freaking out. Dylan started crying that it hurt really bad, I couldn't get it to budge AT ALL. So I called Bryson in a panic and then threw the kids in the car and raced up to his work to see if he could get it off. Dylan cried and cried for the full 45 minutes of me trying and then having to drive to Bryson's work. Poor guy! It took both of pulling up on his liner and Bryson yanking down on his leg to finally get it off. Thank goodness! It ended fine and Dylan was able to put his leg back on (WITHOUT the sock!) a few hours later and play around just fine. But we (Dylan and I) were a little traumatized. :) And ps...I totally don't blame our leg guy for this. What he suggested totally makes sense and could've possibly helped Dylan be more comfortable. It was worth a shot to help his ongoing pain. I shouldn't have let him walk around in it for so long (30 min) when it was clearly too tight to begin with.

**General update on our handsome man since it's been so long. He really is doing GREAT! He is such an active little kid and we constantly hear how people are shocked to find out he has a prosthetic leg because he does so great with it. He LOVES to run and ride his bike. He loves to jump off of anything that he can climb (which freaks us out be he does just fine!). He loves to play outside and play sports and go to the park. He is potty trained! YAY! He is such an independent little boy. He loves to do everything himself with little or no help from us. He is so brave and is such a tough cookie he has a hard time admitting when he is hurt or in pain, which is why the last few weeks of him complaining about his leg have been hard because it must mean that he really hurts. He LOVES his big brother and little sister. He is the most kind hearted little guy and loves to make people feel better if they are sad by giving hugs and rubbing their back and singing to them. He makes us smile and laugh all day long.

So handsome!

3 years old!

Riding his bike!

At an event our hospital invited us to!

Dylan and I were on the news talking about a fundraising event we were a part of for our hospital!

He LOVES his siblings! And they LOVE him! :)