Post Op Update

My husband says write. He says people need to hear my voice. Maybe he's right but we have had so much happen that I don't know what to say or where to start. I guess I could write a book about Perthes, about our third summer of surgery but no one wants a book for a blog post so I'll try to write and keep it abbreviated.

Surgery was July 3. We tried to cram as much fun as possible into the weeks leading up to surgery. We went swimming a few times. We had another middle finger Perthes party with cake and water balloons. We went to the movies and the museum. Our extended family decided to have the fourth of July picnic early so Littlest (and the rest of us) didn't have to miss out.

The weeks leading up to surgery were painful for my boy. He couldn't sleep. He had multiple nights that he was falling asleep as we were waking up. He had multiple nights of waking up from pain. He had multiple nights of crying himself to sleep. Those nights of extreme pain destroy a mama's heart. By the time surgery happened, we were all ready for some relief.

There were two facets of surgery. First reshaping the femoral head and then a pelvic osteotomy. We were prepared ahead of time that there was a possibility of needing to do the procedures separately. Two surgeries possible and we wouldn't know until they began surgery if he would need one or two. That raised our stress level significantly. As the time allotted for surgery starting coming near, the waiting got harder. Finally the nurse called to tell us that they had finished the first part and were going to move on to the second part. One surgery!

We are extremely grateful for one surgery but it came with a price. Our boy was in surgery for eight and a half hours. It was exhausting. He woke up from surgery with a very angry sciatic nerve. The doctors said it is common with the length and type of surgery that Littlest had. He is still dealing with nerve pain. They said it can take some time for the nerve to fully wake up and calm down.

Our boy is in a spica cast. He has decided that last year's petrie cast was easier than this year's spica. Last year though both legs were in casts, he could still sit up all the way. He also was allowed to bear weight last year and not this year. The cast is heavy and hard to maneuver. The upside is he's just over half way through the time in the cast.

Still he smiles. Still we laugh. Some days are discouraging. Some days we know we'll make it through. He's the strongest person I know. He faces painful recovery head on and smiling more often than not. He's my hero.

Middle finger Perthes party
cake courtesy of my dear friend Robin at Cakes from the HART

Daddy and the boy chilling in pre-op

spica cast

Root Beer the monkey has been his comfort through every surgery

field trip at the hospital

Hospital date night. The fabulous uncle stayed in the room with Littlest so we could go outside for a half hour

Hubby brought me dinner that wasn't cooked in the hospital. We can make anywhere a date!

2 weeks earlier Gramps wore a clown nose at the hospital
Littlest wanted to do the same
clowning around  in the hospital runs in the family

discharge and heading home

here we go again...

Many times I thought I would write some how to advice of how we managed having Littlest in a Petrie cast last year. I thought I would post pictures of how we modified clothes and how he managed to get in and out of the car with both legs cast. And then I thought I'd post updates like when he got the cast off finally and when he was in the brace. I'd think of things I'd like to say but wouldn't blog about them because I wanted the congruent timeline of events to be perfect. So for the last 10 months I've just stayed silent.

I can't wait and hope for my perfect timeline anymore. I need to write. In mid-April his pain started escalating again. This time we were prepared for it. The surgeon had told us it would happen and that we would do nothing until doing nothing was no longer an option. When day after day the pain level stayed high we knew it was time to bump up our doctor visit from August to immediately. New x-rays show his hip getting worse again and our surgeon had reached the end of her ability to help him. I'm not exactly sad about this; the surgeon we have had for the past year is a good doctor but not a hip specialist and doesn't have the warmest bedside manner for working with kids. Even so, it is difficult to hear that your son's condition is beyond the ability of his doctor.

The new surgeon team she referred us to took even more x-rays with some added angles. The short version is that my boy needs surgery yet again. The new team spent nearly two hours with us explaining everything they saw and the procedures they would like to do. It is major. Instead of focusing on the femur as they have in the past they will reorient the pelvis to cover the femoral head and possibly need to reshape the femoral head to fit in the hip socket. The positive in this is we really like the new team and we trust them. They were great with our boy and great with us. They appreciated and applauded the fact that I insist that Littlest be part of all discussions because it is his body and his healthcare. Yes, mom and dad make the decisions now but he needs to know how to advocate for himself and how to navigate the medical world as he grows. Someday he will need to do this on his own and I plan on giving him as much of a head start in that department as I can.

We don't have a surgery date yet. MRI is in a couple of weeks, pre-op is in early June, and then surgery as soon as they can arrange it in the schedule, probably late June to early July. Even though we knew at the last procedure that another was likely it is still difficult to hear out loud. We had so hoped to have a summer of fun not another summer of surgery. When the last visit had the results of "no change, see you in six months" we thought we had managed to at least have a summer without medical issues. But Perthes is a terrible disease and has not proven to be predicable in the least. 

I've had a hard time with this. I've told some people but I haven't wanted to tell everyone. I've wanted to hold the news close. At first diagnosis when friends would ask how they could help I knew, I had answers. Now as we approach the forth surgery, I no longer know what to say when asked. Four surgeries in three years, I feel like I should be a pro at this but I'm not. I feel like I should know what to say when friends want to help. Early on I felt like this was a fast easy journey. We have said often that in the beginning we understood Perthes more like an injury than a disease. We thought surgery would be one and done. Now three years later still facing the same things, I feel like a burden. I feel like my constant narrative of having a kid who hurts so much he cries himself to sleep and wakes in the night is difficult for my friends to still be hearing. I'm probably wrong about that but it is still my current perception.  

My Littlest is frustrated. He's hurting to the extreme. Hubby and I would do anything to take his pain away but we are helpless to make a significant difference. Brothers are stressed out about this. Sometimes average playing results in someone bumping the leg and tears. Yet somehow in the midst of it all we still laugh, we still play, we still love, we still hope. We hope that this will be the surgery that will bring relief. We hope that soon this will be a memory instead of a current reality. We hope for a cure for Perthes so that other kids can avoid the pain that our son lives with constantly. Did I mention that we hope this is the last surgery and after this he can go about the business of being a little boy?

Legg-Calve Perthes Disease Pending Surgery

I've had a lot of questions about Littlest and his upcoming surgery. I've answered them as they have come but I've had a hard time getting ahead of the questions this time. Emotionally this has been the hardest of the three surgeries to prepare for and some days have just downright stunk. It finally feels like the time to write about it. Questions don't bother me so if I miss one of yours, feel free to ask.

Littlest was diagnosed two years ago with Legg-Calve Perthes Disease, or Perthes for short. It is a condition that interrupts blood flow to the ball of the femur causing in his case nearly complete loss of the femoral head. Though Perthes is not life threatening, it is life altering and very painful. His, as our new surgeon reminds me regularly, was very advanced at the time of diagnosis and he was over the age of six. Either of those factors make recovery more difficult and he had BOTH. 

In April we went for our regularly scheduled check up and x-ray and the doctor showed us how the bone has stopped growing properly. His femur sits inside the hip incorrectly and is causing him a lot of pain and limited range of motion. She recommended another surgery. We sent the x-rays and recommended treatment plan to our former surgeon, a Perthes specialist and an amazing man, who confirmed our new doctor's assessment and treatment plan.

This paragraph is for those of you who ask for details, if you're squeamish feel free to skip ahead to the next paragraph. In the surgery, the doctor will release the abductor tendons in his groin which will hopefully allow her to push his leg into the hip socket. If cutting those tendons do not give her the range of motion to get the femur back in the hip socket, she will also cut into the hip capsule. The goal is to maneuver his leg to the position it needs to stay in.

When the surgery is done he will be put in a petrie cast (both legs, thigh to ankle with a bar in between) for a minimum of six weeks. Depending on the range of motion the doctor can get he may be in the same cast the entire time or they may need to recast him widening the legs each time. Once he is out of the cast he will be in a leg brace for at least four months.

picture of petrie cast used from www.bcchildrens.ca

He will be allowed to be weight bearing which he wasn't after the first surgery. Although he will be able to stand and walk as needed, he will spend much of his time in a wheelchair again and will once again start school in a wheelchair. I love our new school, they are already preparing for his needs at the beginning of the school year. 

I've been asked several times what makes this surgery more difficult than the others. I think partly we have more time to think about it. At the original time of diagnosis, his disease was so far advanced that surgery was scheduled just over a week later. We didn't have time to prepare, we just had to act. It is amazing the strength one has in an emergency situation. The wear of doing life while waiting is much harder than relying on the adrenaline of the emergency.

The biggest reason this is harder though is we were supposed to be done with childhood surgeries. This summer was supposed to be the finish line. Last year his former surgeon told him he could play soccer this year and rather than playing sports and running around, he's in constant pain and facing another surgery. The active stage of Perthes is 2-4 years, this is the two year mark and it feels defeating to still be in this much pain.

For the logistics, surgery is July 28. We are working on getting our house prepared. The younger boys currently share a room and we are moving Middlest to his own room. It is good, it will give them both the space they need, AND it is a ton of work! In the next two weeks we will have a wheelchair ramp built, something we should have done the first time around and now we know. Grandma is helping sew "breakaway" clothes to fit over the cast. He obviously cannot go commando for six weeks! 

I'll update more later. I'll tell you more about how we are all feeling but for now I just wanted to answer all the questions that have been floating around. Love to each of you. We appreciate all the prayers and well wishes that have been sent our way.

Perthes update

I've mentally started this post at least 20 times but haven't actually written it. I think there is just so much to say that I don't know what to say. In June 2014 my littlest was diagnosed with Legg-Calve Perthes disease. Yeah, I know you have no idea what that is. Most people don't. Quite honestly, I wish I didn't need to know what it is. But that said, I have become fluent in the speech of the disease over the past year and a half.  Quick overview....blood flow to the femur becomes interrupted which caused, in our case, a complete deterioration of the femoral head. Surgery, wheelchair, physical therapy, and a lot of high strung craziness ensued.

In October we started noticing him limping more, subconsciously guarding his leg, and hurting at night if we had spent much time walking during the day. Just before Thanksgiving his pain had escalated so severely that we ended up in the ER for pain management. Xray, labs, narcotic drugs, nothing gave us answers and nothing helped the pain. A nurse told me it was just a perthes flare up. She expected that I knew about them and that they can last up to five days. Ummmm, nope. Up to this point, flare ups were a day or maybe two.

The uncontrolled pain lasted the full five days and then miraculously went away. Four days he was great. Then four more of excruciating pain. Then three of being ok. Then pain again. The roller coaster was exhausting for all of us. I couldn't believe that the pain that had escalated for six weeks to bring us to this was just a flare up. He was missing too much school. I was missing work.

The night he woke up from a dead sleep crying was the night that sent me over. I called the surgeon the next morning and begged for something to help the pain. It had gone on for too long and was too severe to be a flare up. She scheduled a steroid injection for the next morning. It didn't help instantly but by the third day his pain had gone from consistently hovering in the 7-9 range to hovering in the 3-5 range. It was enough improvement that he was able to move without "Ow ow ow!" He was able to sleep through the night and able to return to school.

One set of xrays showed the bone to be "spotty". The surgeon ordered an MRI and prepared me that she thought he was possibly having a new episode of blood flow interruption in the femur. This was so discouraging to look and think we might possibly be back at the beginning again. MRI was just before Christmas.

Last Monday the surgeon called to tell me that the MRI results were good. The spotty appearance of the bone is new bone growth not further bone death! The blood flow has not been interrupted a second time. His bone did grow back flat and is not an ideal shape. There are things he physically cannot do because of the deformity of the bone (like sit "crisscross" or sports that involve crouching like baseball catcher). He will need hip replacement as an adult. At this time though, we are not looking at any further childhood surgeries. That is a relief!

Remember in the second Harry Potter movie when Professor Lockhart tries to mend Harry's broken arm but instead removes all the bones from his arm? When he goes to see the nurse she has this conversation with him.

"He should have been brought straight to me. I can mend bones in a heartbeat but growing them back...."

"You will be able to wont you?" 

"I'll be able to, certainly. But it will be painful. You're in for a rough night, Potter. Regrowing bones is a nasty business."

I showed littlest the clip from that scene and he smiled. I told him he's like Harry Potter and that Harry understands how much it hurts when bones grow back. And just like that our new mantra became "Regrowing bones is a nasty business."  And he always responds with, "Yes, yes it is. A very nasty business." It keeps us all smiling and pushing forward when we feel overwhelmed with his pain. Once again it is the smallest of things that encouraged us and reminded us to keep pursuing hope. We finally see the light at the end of the tunnel.

tangible encouragement

Children's Hospital called, there is finally an OT (occupational therapy) spot available for my middlest. He begins therapy for his food/texture/variety issues the week before school starts. It's at least a starting point but it's a starting point that once again makes me realize how big this iceberg might be. He will have to leave school early once a week for therapy because it is the only time slot available.

My littlest is finally starting to heal from surgery. His bone is healing nicely but his incision has taken a long time to heal. He had a reaction to the stitches and while his body was rejecting the stitches and trying to push them out, the incision got infected. Thankfully with a round of antibiotics, a mom who can handle pulling stitches out as they began to emerge from his body, and an AMAZING medical team, his incision is now also on the mend. He gets out of the wheelchair the first week of school and then starts physical therapy. He'll be on crutches for about four weeks after getting out of the wheelchair. He also will have weekly therapy.

I'm finding myself already anxious about the new school year. Two kids in weekly therapy plus nightly homework puts me on edge. And there is still more screenings to go. The specialists who evaluated Ev for his food issues all unanimously agree that he has sensory issues but we are on a waitlist for the screenings that can give us a formal diagnosis.

In the midst of it, sometimes I forget how to breathe for a few moments. I feel the familiar tightness begin to close around my chest and use all of my coping skills to keep myself from falling off the precipice into the bottomless cavern of anxiety. It's good to be able to put words to those feelings. They seem as random as they are overwhelming until I actually write them down.

I have a favorite wine glass. I once joked to a family member about this glass in the midst of last year which was truly the most miserable school year EVER for my middlest. I told this family member that on really tough days when my son was screaming at me and melting down, that I could count on my wine glass to encourage me and remind me that I am strong, bold, fearless, beautiful, amazing, gifted, and incredible. I realized after I said it that I wasn't really joking. That glass gave me words to remember who I am. Sometimes I'm a little thick so seeing the glass was a tangible reminder that I can do this.

Along the lines of sometimes needing a reminder. When littlest was in the hospital for surgery, I found a bracelet at the gift shop. I rarely ask for jewelery so Hubby immediately agreed when I asked for it. I would turn it so that the words I needed most were facing me. I love, love, love this bracelet.

Though neither of these things define me, they both encourage me. Do I need a glass and a bracelet to be who I am? Absolutely not, but I do appreciate the reminder of truth that both items give me. I'm strong, stronger than I feel. I'm brave, braver than I feel. And most importantly, God is my rock and my fortress, a very present help in trouble, my strength and my shield, and I can rest in His arms knowing that he will carry us through. 

a picture says a thousand words

Just before surgery

just after waking up from surgery, of course 2nd question was "can I play DS?"

Spiderman came to visit and gave an autograph

worn out and waiting for discharge

leaving the hospital

first trip out of the house means walking to get Slurpees. Just because it isn't the summer we planned or wanted doesn't mean we can't have fun.