Clinton's Hip Reconstructions...

Where to begin, where to begin?? I'm hoping not to ramble too much, but there are a few details I want to include just for our own family history, so hang with me, I'm going to dive in...

We've battled "leg" issues with Clinton since birth. When he was in NICU, we knew that there was something off with the right leg especially, his veins were darker and there was a mass collection of them all down the outer side of it.
His foot was clubbed and calf muscle stiffened over time, we weren't sure why, but knew there would be issues down the road. 
I've searched high and low for some pictures that can show the vein formation and calf tightness, this was the best I could come up with without turning my house upside down...

This is shortly after he started walking (at 4 years old). He was still using a walker, but you can see the awkward position his leg and foot is in, you can also (barely) see some of the veins in his thigh.

Up on his tippy toes, pushing along...

This was just a couple months ago. It's actually really difficult to get a decent picture depicting the conglomeration of veins in his leg and foot. You can see in his lower foot how many there are, his upper thigh looks similar, the veins are just larger there...

This is the same day as the pic above, we've been doing Botox (Yes, the anti-wrinkle stuff) in his leg and then casting it for weeks to try to keep his leg loosened up. It's a very short term fix, we have to repeat at least twice a year. It helps the lower leg problems, but doesn't do anything for his upper leg and hip problems. (Here's his latest casting at Shriner's, his is all done, and the therapist is working on Bob the Bear's cast in the background...)

This was last summer, wearing his AFO cast in between Botox castings. You can see his stance is a little lopsided, that's partly because of the water, but he much prefers to lean on his left side while standing to give the right hip strength and stability.
After moving here and getting acquainted with our new docs in Portland, we've learned things I never would have dreamed about his legs. Our first appointment there, I mentioned his leg "popping" and hurting him. His hip would literally make a popping noise and we could see the bone shifting. It never bothered him much, but a few months before he had begun to complain about it hurting when it "popped." The resident doc examined him and looked at me perplexed. He said he was going to get a second opinion. His "second opinion" person just happened to be the head orthopedic surgeon of the hospital. He told us that he thought Clinton's leg was actually dislocating out of socket completely and "popping" back in. That was the noise we were hearing. It was hard for me to believe that could be happening without extreme pain, crying, ect... but after all the testing (months later), we learned it was, in fact, true.

Dr. Aiona (said surgeon) wanted to try to repair the socket that was quickly wearing away in his right hip. Last Spring, we underwent a lot of outside testing and consults with other docs around the Portland campus. We met with Vascular surgeons, dermatologists, Anesthesiologists, Nephrologists (for his one kidney), and more. Aiona wanted to cover all his bases and make sure that Clinton was fit for surgery and that he, as surgeon, had the right information to proceed. After a few more x-rays and an MRI, we set the surgery date for June of 2011.
We planned a family camping trip for Clinton. His summer would be shot, due to casting and the inability to walk, so we wanted to make one fun memory. We had a blast, we camped, fished, played in the water and sand and tried to soak up NOT thinking about the upcoming days and months as much as possible.
Cara stayed with family there for a few extra days while Clint, I, and Clinton went home to load our bags and head up to Portland for surgery. As we were loading the car, the doctor called. He was doing a last review of his MRI and said "it would be INSANITY to proceed" at that point. The veins in his leg were much worse than we thought. He felt it was too risky to proceed without knowing more about them and the potential risks of blood loss. He wasn't sure if we'd ever be able to fix it surgically. We were shocked. No. "Shocked" doesn't do it justice. We had spent months planning and building ourselves up for this surgery, making arrangements, summoning courage for ourselves and him, all our plans were centered around this day. Now, it wasn't coming. Not any of it. We had spent so much time trying to be optimistic about it all, it seemed like a let down to not go through with it.
Clinton didn't mind. Heck, his summer was looking a whole lot brighter without that on the horizon.  It took Clint and I a few days to adjust to the thought, however. We just took it as an unexpected blessing-in-disguise. We just soldiered on and assumed that he would never be able to get it fixed and we'd have to come up with a new plan for the dislocating and pain. We used the wheelchair and heat wraps more and tried to keep his mind off things.

Then, I got another call in January. It was Dr. Aiona again. He wanted to do the surgery again. Only this time, after he'd reviewed and consulted even more, he'd learned his left hip socket was deteriorating just as badly as the right. He wanted to fix both sides.  ...  ... ... Gulp. ... ... ... Again, "shocked" doesn't give justice. I'd made peace with never fixing it, we had no idea he was even consulting with others or looking at the possibility still. Completely out-of-the-blue. Then, the scariest part... talk of blood loss. The thought of it made my stomach curl in on top of itself. He said he would take the surgery in phases. He'd cut, assess blood loss, and continue. If it got to the point where it was difficult to control, he'd try to close things up and stop the surgery. He'd have a supply of blood on hand for transfusions. In the end, it was up to us, his parents, to make the choice. If we didn't proceed, he said his hips would eventually wear down and dislocate permanently. At that point, they would be irreparable. He would likely be wheelchair bound by his late teens.

I was literally sick. Shaking. I felt like it was gambling his life now, for quality of life later.

He is such an active kid. His happiest times are spent working with Dad in the shop, climbing in and out of cars, hiking in the woods, any following of the "men" possible, really.  He likes working. He likes feeling "big." It was hard for me to imagine that he could happily live in a wheelchair. But those veins. There was no clean, easy path through them, and one of my biggest fears as his Mom has been cutting that leg. I've worried about it for years. And now, to do it on purpose?! It seemed so reckless after 10 years of protection.
 Decisions like this would be so much easier if it were for myself. I could weigh the pros and cons so much easier if it were my own future I was gambling. My own health, my own pain. But for someone else, OUR CHILD, it felt impossible. It hurt no matter the choice we made. We knew the future would have pain regardless, but what was the best choice?
We prayed. I lived for Proverbs 3:5 - "Trust in the Lord with all thine heart, and lean not unto thine own understanding." I repeated that in my mind over and over. We had to believe that it was a blessing we had been led to this point in life. Had we not moved here, we would have never known any of this, never met the doctor who had been pursuing this, (without us even recognizing it), would have never had the CHOICE to better his future. After a few days, it seemed like the only choice. Our nerves calmed, and we felt like it was the right thing to do for Clinton.
- Now for scheduling. At that point I had about 12-13 weeks left in my pregnancy. Trying to do a major surgery with a newborn was NOT the best way to go about things in my mind. Plus, Clint had been laid off and was at home. It suddenly seemed like a blessing he didn't have work. He could be home to help lift and care for Clinton afterward when I would be pretty useless. It was short notice, but they were able to miraculously find an open day and fit us in. February 17. Life whizzed by quicker than possible and suddenly it seemed like everything hit at once. On the 5th, my stepmom passed away from a long and hard-fought battle with lung cancer. My Dad lives in Boise, so I left that day to go be with him.  7 months pregnant, I drove by myself and had a run in with an evil speeding ticket and some deer in the dark as well. It was stressful, and I just wanted to get to Dad's, it was such a relief that night to pull up in front of his house. I thought I'd never get there. It was draining, somber, quiet, we all knew she was sick, but it was still such a shock that she was gone. Planning the funeral, people visiting, cooking, cleaning, it was hard for my Dad and I was thankful to be able to be there and try to help, and to spend some time with him. The week flew by, and before I knew it I was headed back home  to prepare for surgery again.

And so it began...

The morning of surgery day. Grandma was able to come stay with Cara at our house and send her off to school while we were in Portland (about 1 -2 hours away). The morning before Clinty had a weird rash on his chest and back. He never gets rashes, so I wanted to check with our pediatrician here before we went ahead with surgery. His Strep test came back negative, but the doc thought it was still strep. He sent it off to culture, but that would be days away. We started antibiotics just in case, and tried to get a good night's sleep. The morning before pre-op appointments (Thursday) his rash was worse. I called the hospital to see what we should do. I was terrified they would cancel the surgery and we'd have to go through the prep all over again, maybe with Clint working this time, and a new baby. I was so upset. Pregnancy hormones didn't help. I threw up all day between phone calls to the doctors and when I wasn't throwing up, I was crying. Poor Clint. I hid it pretty well from Clinton, but my husband was an amazing rock for me to lean on. He had strength when I was far from it. Looking back, I can appreciate it even more. I'm so thankful for him.
After a full day of back-and forth-calls the docs said to just bring him up and let them make the decision after seeing him. CLinton acted fine. No cough, no fever, no sore throat, just a rash. We determined it was probably nerves and got the go ahead. Surgery in the morning.

Here he is watching a video while they prep him. It was 6:00 am, we had little sleep, and once again, every time I looked over at him, with his cute little hands, smiling and sitting so happy with his bear, I had to fight to swallow the enormous, aching lump in my throat. Part of me wanted to swoop him up and run down the hallway to the car and make the fastest getaway possible. I hated seeing him so happy, knowing the battle he was coming against in just a few minutes time. Dark thoughts always creep in, doubts. It happens every time he has surgeries or medical issues. It's so hard to push them away and trust others with his life... "Here, take my son, slice him open, spill his blood, break his bones."  Awful thoughts. It took a lot of faith and looking back at why we made the decision initially to bring us all through that morning. It was time to "Trust in the Lord..." and be strong....

Kisses with Dad as they were getting ready to wheel him off. They doped him up pretty well before wheeling him away. He didn't cry or worry. I cried and worried enough for all three of us. Again, I'm so thankful for CLint. I thought many times over about how much harder it would have been without him. It's such a blessing to have someone by your side, who loves your kids every aching bit as much as you do. Marriage is a priceless blessing. I have an amazing husband, partner, and father for my children. He carried me through that terrifying morning.

 After surgery. What we thought would be about a 6 hours stint in the OR turned into almost 10 hours. Dr. Aiona looked haggard when he finally came in to talk to us that evening. The right leg (the one with all the veins, the "bad leg"), had taken the full 6 hours by itself. He said trying to weave his way through the veins was like trying to pick up a lake by its corners and keep all the water contained. Apparently there was a lot of blood loss, but with the help of the "blood saver" machine that recycles the lost blood, repairs the cells and gives it back, he didn't need any further transfusions.
His hip sockets were much worse than "he had originally imagined" and weren't only dislocating to the side, like typical dislocations, his were dislocating in all directions, front, side, and backward. Which now, in hind-sight, makes sense because at times when they "popped" it hurt him much more than others, and sometimes would even make him fall. The doc said he didn't think his sockets would have lasted much longer. He had cut and break both femurs (thigh bones), angled them inward to the socket centers, and then used bone and metal plates and screws to break and re-form the hip sockets. We were so grateful to be able to not only just complete the surgery, but to be able to get both sides done at once. With all the prayers sent, he came out the other side miraculously. Everything went as well as it could have.

 He slept A LOT the first couple of days, but when anyone so much as even looked at his legs, they'd hurt. Lots of sad, painful moments followed...

Trying to be cheerful the next day. Such a bright little smile, it made our day.

Bob was casted up too. They spent a lot of time watching TV with his best friend.

Spica cast. Keeping this thing clean makes changing diapers look like a walk in the park. I will forever have sympathy for people who've had to deal with this cast/surgery and the messy aftermath. It's a chore.

Lots of painful position changes to try to keep the swelling down in his legs and torso. We ended up having to split the cast down the insides to open it up for room to swell without cutting off circulation. 

 So, so, so happy to see him smiling .

 This one almost makes me sad. It's a pained smile, he was trying so hard to be sweet, even when he was hurting.

 The view from our room. Clint and I took turns staying with him in the room at night while the other slept in a family sleeping quarters they provided at the hospital. Pretty to look out over downtown Portland at night...

Lots of lines and tubes, all the joys of the hospital...

 Grandma and Cara came to visit a few days after surgery. He was happy to have visitors, but he was so tired, even though he tried to stay awake, he ended up sleeping most of the day.

 With Bob.

 Cara and I got to go play in the hospital playrooms with each other. I missed my little sweetie so much that week. I was so happy to get some time with her, made us all ache for home even more.

 The day before going home, getting all cleaned up in bed. Looking spiffy.

And FINALLY:

Ahhh, after a horrendous morning of prepping his cast for home and over an hour spent crying and screaming (each minute seemed like its own hour)... he was finally able to load up in the wagon and roll down to the parking lot to go home. It took some finesse to get him to fit in the car. But he ended up reclined in the front seat and took a nice big nap all the way home. What a tiring day, but a great way to end it. At home, in our own beds. This is his room now, our living room. He stays out here all the time, and either Clint or I stay here with him at night for changing, meds, feedings, ect... This is his FAVORITE pass time, playing racing games with his very bestest friend, DAD.

Happy and Healing.

I'm so glad to be over the scariest hump. We've been thoroughly blessed. No infections, no complications hardly at all. He is a very blessed and loved little boy. I could never have anticipated the amount of encouragement, fasting, prayers, that were sent for him. We'll continue down the healing path and hopefully be walking (with the walker?) by the time baby gets here. 

Life is crazy and full, but times like these make me more thankful for life itself than ever. Life is delicate, it's so easy to see Heavenly Father's guiding hand in this boy's time on Earth. He has been a bigger blessing to us all than I could have ever imagined. I cant wait for the years ahead, when he feels even better and can accomplish the things he wants with more ease and less pain. It's a privilege being his Mom and watching his strength grow day by day. I'm so thankful for all this has taught us as a family. We love and appreciate each other more and more with each passing day.