KAEDEN: [ORIGIN – GAELIC] ¹SPIRIT OF A WARRIOR
AN EXCERPT FROM MY JOURNAL
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hip dysplasia consult

Sunday, March 27, 2011

"I am going to start by saying that I am only writing this down to document the whole event that in the last two weeks has turned our lives somewhat upside down. It would be a lot easier to just put this out of my mind, but I want to remember all the details so that someday I can tell him all about this chapter in his story..."

The time line
click on the buttons below to read
 

Kaeden was born on time which we'd learn would suit his personality, perfectly. He was hard to console (but we were brand new at this whole parenting thing) and thought it was normal. I had a LOT of trouble with nursing and thought maybe he was just hungry and freaked out (like his parents)! Before we went home, he was thoroughly examined by an experienced pediatrician and we were cleared to be discharged.

We went to the pediatrician and I pointed out that his hips seemed tight. (I’m going to dork out for a minute…when I mean tight I mean that when I did the Barlow and Ortoloni exams on him… [YES I DID THIS EXAM ON MY OWN SON] I noticed that his right hip didn’t quite have the flexibility that it should. However, there was no palpable “clunk”. This is a standard test that practitioners use to test for hip dysplasia/dislocations in infants. Our pediatrician said STRETCH THEM OUT. We did, but I kept an eye on it.

We went back to the pediatrician because he was going to be circumcised. I mentioned the hips AGAIN and she said, STRETCH THEM OUT. Now I am not trained in pediatrics. I know how to do a full physical exam on babies, but I don’t practice. So, when I point out something, and the doc says, stretch out his hips, I trust her – because I am an overwhelmed, first time mom, with a severe case of sleep deprivation

Kaeden had a little cold – I took him and mentioned hips AGAIN. Still nothing. (meanwhile I am keeping my eye on what most people would think is an extra fat roll on the inside of his right thigh – I’m thinking it might be an asymmetrical gluteal fold.)

Happy 5 Month Birthday Kaeden-Boy! I know something is funky with that “fat roll” and make an appointment with the pediatrician for the next day.

I take Kaeden to the doctor – point out the hip not extending properly and the “fat roll” – and tell her that it’s not right. Finally, she tests his hips AGAIN and tells me, “He needs an ultrasound and x-ray to rule out hip dysplasia!” YOU… I HAVE POINTED THIS OUT TO YOU SINCE HE WAS 5 DAYS OLD! WHAT KIND OF IDIOT ARE YOU? That was what I wanted to say, but what I actually said was this: “I want the phone number of the imaging department, and an appointment made at UCSF Pediatric Ortho dept. ASAP.” They make the appointment for Kaeden for March 29 to have US (ultrasound) and x-ray and send a referral to UCSF.

I don’t trust people in general anymore so I decide to call the Imaging Center and see if I can get an earlier appointment. Good thing.

1:40PM – they had an appointment for THAT day and I take the nugget to have US and x-ray. (PS – I spoke to the radiologist to find out when he would be reading the US and x-ray -it’s to be faxed to the pediatrician the next day)

2:00PM – I call the pediatrician and ask about results. They have to double check the fax.

3:30PM – The pediatrician’s office calls – here is how that conversation went: “Yes we have the ultrasound results. He has hip dysplasia.”

ME: “Ok – is it a subluxation or full dislocation?”

HER: “Ummm. Let me see… yes, his right hip is fully dislocated.”

WHAT THE HELL!!!

ME: “And his left?”

HER: “Ummm. No his left hip is fine.”

ME: “Ok – have you called UCSF Pedi Ortho yet?”

HER: “Yes, but it turns out that they didn’t get our referral request from last week… so I just sent it again.” (Read: He doesn’t have priority in the list of appointments and it will take longer to get him seen)

ME: “I want the direct line to the pediatric ortho department. I will make the appointment myself.”

HER: “Ok – here it is…”

ME: “I also want a copy of the reports faxed to me now.”

HER: “Ummm. Ok”.

4:00 PM - I get the reports – and call pediatric ortho… oh wait, no I called adult ortho because they gave me the WRONG NUMBER! No wonder they didn’t have record of Kaeden, they sent the request to the wrong office. UCSF gave me the right number. I call them. First available appointment: April 6th. I explain that he is in a pivotal time and that being seen now vs. two weeks could be the difference between Kaeden in a brace or a cast. She looks again. They have an appointment for March 23rd. TOMORROW. (THANK YOU GOD!)

We drive an hour in the opposite direction – get the US and XRAY images because they forgot to give them to me on the day of my appointment. What a good boy, in the car for over three hours… with a dislocated hip… and not a peep! I LOVE HIM SO MUCH! We see the doc who happens to be the Chief of Pediatric Orthopedic Surgery and find out that this case was so subtle that it was A MIRACLE we caught it and that he didn’t end up as a ten year old with a dislocated hip that no one noticed until it was too late to correct. He also said his was a severe case requiring SURGERY. I also have to point out, that Kaeden didn’t have any risk factors: He wasn’t breach, there is no family history, and he isn’t a first born female.

I schedule Kaeden’s surgery. Our little nugs has to have surgery April 26th and wear a brace for three months. THANK GOD, it is fixable and that more than likely he will NEVER have any further problems. Thank you. God.

So there it is, our life for the last two weeks. We come home. We are tired. Exhausted. I can’t believe my little beauty has had a dislocated hip since birth and that he is walking in a walker, rolling over, smiling, and laughing all the time. He is amazing. I love him.

7:00 AM – Today was your hip surgery. UCSF. Mommy, Daddy, Nana, Punkin, and Grandma were all there. The docs told us to expect two to three hours for the surgery. They briefed us on the possibility of blood transfusions. The almost certain reality of a cast. You got to take your Scout (your best pal) with you. We sat in the waiting room, waiting and praying. Daddy and Punkin went to get something to eat. And 53 minutes later, we were called and told that you were done. Surgery over. Complete success. No cast. No transfusion. No general anesthesia. The doctor went in, did an arthrogram (contrast is injected into your joint and an x-ray is used to view the joint), he performed a tenonotamy (your adductor was cut to allow your hip to reduce into socket), femur was reduced and you had a beautiful and stable joint. We are still praying that your acetabulum will heal and grow around your femoral head. You will be evaluated for the next two years and we will see what happens from there. You will be monitored until you are thirteen years old. When we got to you, the nurse was holding you with such love, you looked like her own. We were so relieved.

10:00 AM – We were back to the hotel. And my little bean, you were rolling over and smiling, one hour post-op. Your little Scout even donned a band-aid on the same leg. I’ll admit, it took four of us to change your diaper the first time. We didn’t want to hurt you and were freaked out by the very real possibility that your hip could dislocate again! But later that day, we went on a walk down the wharf. You slept soundly through the night and the next morning we even went to see the sea lions on pier 39. You are incredible. Such a little warrior. And love – one day, this will be but a small part of your very big and bright future.

 

Tuesday, April 25, 2011

"Surgery. ✓. Cutting two teeth. ✓. Smiling through it all. ✓. You will be unstoppable. Baby boy – I am so incredibly proud and humbled by your strength. You are loving and sweet and kind. I know you are in pain. And we hope that after all of this, that will be over."


The Recovery
is supposed to look like this

In six weeks, we will come back to UCSF, you will get another x-ray and they will check how your hip is growing. We are most concerned about your femoral head. It is significantly behind in relation to your other leg. At three months post-op you will be evaluated again with another x-ray. If that shows improvement, you’re brace will come off. If it doesn’t, you will be reevaluated six months later. This is how it will be. Months at a time. Then, years at a time. But, we are hoping for the best, and know that you will be in the best hands along the way. We love you to the moon.


He Walks
Click the button below to read and then watch him walk!

So, recovery didn't go quite as we expected... The damage to his acetabulum took longer to heal than we had hoped. Kaeden actually spent 14 months in his brace instead of the prescribed three. Eight of those months were fulltime, 24 hours a day, and the other four months - during naps and at bedtime.

In spite of all of the setbacks, seven months after his surgery, he started trying to walk. And a few weeks later, he was walking on his own - in his brace! We always tell people that he had to learn to walk twice because after he started walking, the doctor recommended that we remove the brace for safety reasons and he had to learn to walk all over again. This time, without the brace. We were terrified to take it off...but you can watch the video to see how that went!


Want to Learn More About Hip Dysplasia?
Click the images below.
DDH QUICK FACTS
HIP SAFE CARRIERS
SWADDLING VIDEO