the hip repair that wasn't

Perhaps I should change the subtitle on this blog from "our daily life with five kids" to "every few months I'll post something about our life with five kids"!  Sorry!

Somehow life with five kids tends to get busy and you lose track of time! 

Asa was born with bilateral hip displasia.  It was not treated in Kyrgyzstan.  We saw the doctor at Scottish Rite in Dallas last fall and he agreed that Asa needed surgery to correct the issue.  The problem with untreated hip displasia in Asa's case is that the head of both of his femurs have suffered damage.  They look really bad. 

We received Asa's surgery date back in December or January and asked to be placed on a cancellation list with hopes for a date much sooner.  Weeks went by and no call and before we knew it, the surgery date had arrived.  The surgery date was almost to the day, one year from when we traveled to Kyrgyzstan last year for our third, er, first bonding trip to bring Asa home!

We had to farm four kids out and with three of them in different schools it was complicated.  We are so blessed by friends who are willing to give sacrificially and it all fell into place nicely.  Our church family supplied us with a freezer full of prepared meals for our time after discharge.  Mike's co-workers send us off with a nice snack and activity basket.  And off we went.



We left Midland on Wednesday.  We got the call that morning that we would be able to stay at the Ronald McDonald House of Dallas.  Only one parent is allowed to stay in the hospital room, so that was huge!  We arrived in Dallas, got checked into the RMDH and went to the mall to have our traditional pre-surgery meal of PF Chang's (who says this is all about the kid!)  Good thing our kids like Asian food!

The RMDH in Dallas serves three hot meals a day, seven days a week!  They are the only RMDH in the nation to do this for their families.  It was such a blessing!

We had to be at the hospital by 8:30 am for admissions and pre-op work ups.  Asa was officially admitted to Scottish Rite and we began the day long adventure of getting ready for surgery.  Lab was first.  I was dreading that.  I hate that they would do the traumatic procedures first, but I know they need to have the results back early in the process so that the doctor can get the all clear for surgery.  Asa sat in Daddy's lab and took it like a champ!  No tears, no flinching!  The phlebotomist was so impressed that she gave him no one or two stickers, but two dozen stickers!  This is where the sticker parade began...

We then went to the pharmacy and talked to an actual pharmacist.  She went over his medication history, allergies, weight.  Next we were taken to the surgical consult room and met with a member of the anesthesia team.  The doctor made sure he had had no colds, coughs or fevers and again over any medications he takes on a regular basis.  We were then shown to our room! Room 303. 



We were seen by an OT.  We discussed what durable medical equipment we would need at home.  She took measurements for his wheelchair and his bedside potty chair.  A physical therapist also came in and talked to us.  Eventually it seemed that every conversation drifted to Asa's adoption and how well he speaks English and "where in the world is that?" (Kyrgyzstan)  (Sometimes I am very tempted to just tell people he is from Kazakhstan since most people have kind of heard of that)

A person from nutrition came in and explained the meal situation.  Basically, at Scottish Rite, you order your child's food whenever they want it and they may choose anything on the menu!  So, if he wants chicken nuggets at 9 am, he gets chicken nuggets at 9 am.  No hungry children waiting for a food tray full of food they will not eat!

A tiny MRI machine!

Our nurse took us to the playroom and a child life specialist talked to Asa about his surgery.  She gave him a really cool stuffed bird and he promptly named it "Animal".  She told Asa that his bird had a hurt hip and asked him if he would like to help her do surgery on the bird.  He agreed and they used an anesthesia mask to put Animal to sleep, they fixed his hip and then they used blue cast tape to give Animal a blue spica cast.  Just like the cast Asa would be getting. He then refused to play with the bird.  I think he was nervous.



Asa played for a while in the play area and then we wandered back to our room.  During one of our conversations with our doctor's nurse, she had said that they would need more xrays the day before surgery.  They were not in the orders though.  After a call to Nurse Anita, we were sent to radiology for xrays.  They did another xray of his pelvis and we went back to our room.  We were waiting to see the doctor and then we would be released for the day.

An hour later the nurse called.  The doctor had seen the films and wanted more xrays.  Lots more.  They did a scoliosis series.  This freaked me out.  They did xrays of his arms.  More freaking out.  What did they see in that first xray that would cause them to want to see this much more?

At 5 pm we finally saw the doctor.  He confirmed my fears.  The first film made him think of several different degenerative bone diseases.  But the other films reassured him that Asa did not have any of those issues.  We were relieved.  The doctor told us that once Asa was under anesthesia, they would inject dye into his hip socket and do one more external exam to confirm the shape of the femur and the pelvis to make sure things would fit together.  He said that he was very sure things would be fine, he just had to make sure.  He did say, "if things don't look good, we will not bother opening him up" but the chances of him coming out an hour after start time and telling us that they could not proceed are small.

We left the hospital on a night pass and took Asa to the Rain Forest Cafe.  I wasn't sure how he would do.  Yeah. He wasn't a fan.  Too loud. Too much going on.  Thankfully about 1/4 way through the meal he settled in and finally believed us that the elephants right beside us were not going to walk through our table!

We went back to the RMDH for our last night of real sleep.  We had to be at the hospital at 8:30 am.  Surgery was scheduled for 1 pm.  We settled into our room.  Asa could have nothing to eat or drink after 8 am, so Mike and I took turns going to eat lunch.  Bless his heart, as soon as Mike sat down with his lunch I called him to tell him they were taking Asa back!  Asa did well, ver-sed is a wonder drug.  They should hand it out at daycares, no more crying velcro kids at drop off time!



About an hour and a half into surgery, they buzzed us. (They give you a restaurant style buzzer)  It was a bit early, but close enough to the half way point that we were not overly suspicious as we made our way down to the OR area.  The doctor came out.  Our worst fears. 

They had done the dye contrast and everything looked great.  They opened up his hip and the doctor got a good look at the back side of the femur and it was not good.  There was no way that bone was going to fit inside the socket.  If he put it in, chances are it would pop back out.  Or if it stayed in, the bones would grate against each other causing tremendous pain with every step he took.  He called in other orthopedic doctors and they all looked and agreed.  There was nothing they could do.  They closed him back up.

Asa had surgery and a six inch incision on his hip.  And no repair.



It was a kick in the gut.  So many mixed emotions.  I had prepared myself, forced myself to be strong enough, steeled myself up for twelve weeks in a spica cast.  Life was supposed to look a certain way for the next twelve weeks.  It was going to be a hard twelve weeks for sure.  And now everything had changed in one short conversation.

And I had prepared myself that our son might have a chance to one day play sports.  To one day not have kids ask, "Why do you walk that way?"  Or to face the dreaded junior high days of turning to see the kids mocking you and your limp.  I had dreamed of those things for him.  And it felt like those dreams were taken away in one short conversation.

And I had flashbacks to all of the conversations we had when we were waiting for him...."You are still waiting to bring him home?"  "Well, the government cllapsed.  Again.  We're still waiting."  Only now the conversations would be, "I thought he got that hip fixed?"  "I thought he would be in a huge cast?"  I am tired of explaining and re-explaining.  Call me whatever word you think applies,   but I am tired. 

I am tired of things not going according to plan.  (Pity party alert)  Even when the plan was hard, that was the plan and I had prepared myself for it.  (picture two year old me stomping and crying)  I am not sure if this makes sense to anyone else in the world that I would be upset over no cast.  But that cast represented healing.  Fixing.  Opportunities.

Can my son have a happy fulfilled life apart from sports?  Marching band? In spite of junior high teasing? Despite walking with a limp?  Of course, God and His grace is bigger than all of those things.  I just hate hate hate that any child anywhere would face any limitations.

And perhaps the most frightening thing to me: what if the hip does not do okay forever?  What if it becomes painful for him and there is still nothing they can do???  Grace.  Oh, I need grace for this.  Every.single.day.  And Asa will need grace for this.

 

We spent that Friday night in the hospital.  Asa had an epidural and a catheter, so that night was decent, for him anyway.  Mike stayed at the hospital and was awakened every two hours by all of the hospital stuff the night nurses do (to keep themselves awake, I am convinced!)  I stayed the night at the RMDH.  We were told that we would be discharged on Sunday probably. 

The doctor came in Saturday morning and told us that if we felt comfortable, Asa could be discharged later that day.  He was still in a lot of pain and slept a lot of the day.  We talked about it and decided to go ahead and leave the hospital but to take advantage of our room at RMDH and stay there one more night.  That would give Asa another night to rest and recover before the five hour drive home and facing his four siblings.

At the RMDH shortly after discharge.  He was fine as long as he did not have to move.

What is the plan now?  Asa still has a left hip that needs to be put back into place.  The doctor says that the left side is much more straight forward (easy) and Asa will only have to spend six weeks in a spica cast for that hip.  That surgery will take place in a few months.  We have to let this right hip non surgery heal and allow his body to recover. 

What about his right hip?  Basically, there is nothing they can do right now.  When Asa is an adult, he will eventually need a hip replacement.  The doctor said, "If he can make it until he is 35, he'll be  hitting a home run."  It could be sooner than that, or he could make it until he is 40 or 50 years old.  The good news: medical science is coming out with amazing things every.single.day.

In the meantime, I will be calling our ENT to get Ezra's p-flap surgery done.  Yeah, the one that he had in December that failed.  We were waiting to see what life with a spica cast was like before taking on that endeavor.  We will have a follow up with Asa's doctor in about six weeks and hopefully get a surgery date for his left hip, I would love it if it were before school starts in the fall...