Spica Week 6: Cast Change

“DDH is a pain in my ass.” 

It seems like nothing we do really makes a difference. We can take Londyn to the best doctor in the best hospital. That doctor can combine all his knowledge and experience into the best possible treatment plan to fix my daughter’s hip. We can all do everything we know how to the best of our ability, but in the end, you can’t predict how her hip will respond. You can force it into a good position, but you can’t force it to form. You can’t guarantee anything. 

I get it now. I agree. It’s frustrating. You want good news? Well, lets wait and see.

I’ve been dragging my feet writing this post, because cast change was unexpectedly and deeply difficult. So much so that Kyle started this post and wrote the above sentences about the line our orthopedic surgeon said to us when he came out of Londyn’s surgery, “DDH is a pain in my ass.”

My mom put into words what I was feeling when she said I had been confident about cast change because I had been through this already and knew what to expect. Therefore I was surprised and disconcerted when so many things about our experience of cast change was different than Londyn’s first closed reduction.

I didn’t anticipate that Londyn may react differently to things, as she is 6 weeks older than her last procedure. Or the effect different nurses, and mainly anesthesiologists would have on our experience. Everyone had been so wonderful at this Children’s Hospital until this time. I certainly didn’t expect to be discouraged after speaking with Londyn’s ortho after the surgery.

Long story short, the anesthesiologist put me on edge from the moment I met her, announcing curtly that she’d be using a full intubation for Londyn’s anesthesia. I questioned this, because our last anesthesiologist used a LMA (laryngeal mask airway) which is less invasive and made me more comfortable knowing she would not be fully intubated (less damage to her throat). She said she would never use a LMA for a baby under 12 months, as she didn’t believe it’s safe. I wasn’t comfortable with this but tried to give her the benefit of the doubt that she’s being extra cautious and she’s a highly trained medical professional.

They took Londyn from us and Kyle and I went to the family waiting room for what seemed like a very long time. A lady eventually called for “Londyn’s parents” and we went into a little room to speak with our ortho, who had just finished Londyn’s arthrogram and closed reduction. As soon as I saw his face, my heart sank. He explained that Londyn’s hip had progressed a little. But that at rest, there is still a large space between her femur head and hip socket. Additionally, her cartilaginous hip socket is not ossified yet (formed into bone). Though we want to hope we are halfway through our spica journey, it’s probable that she will need to be re-casted for another 6 weeks after these, and possibly even more after that. It’s a “wait and see” what the arthrogram shows each time. Although this is so frustrating and hard to see her stuck in the spica, the alternative is open surgery with hardware placed to “form” her hip, which comes with a laundry list of complications, especially for such a little baby.

After that disheartening news, I was quickly called back to the recovery room, where the anesthesiologist was rocking Londyn in a chair as she moaned. One glance at her O2 sats and I was nervous. They were saying, “Come on Londyn, cry harder,” as she was trying to wake up from the anesthesia. They handed her to me and I assumed they’d want me to nurse her as I had last time, but this anesthesiologist told me otherwise. “No nursing her until you go upstairs to day surgery” she said as she handed me a bottle of sugar water and my nurse rolled her eyes. “She’s the only one who says that,” the nurse whispered, and then, “I’ll get you guys up to day surgery as fast as I can.” Meanwhile, my baby who always refuses a bottle grabs the little sugar water bottle from my hands and shoves it in her mouth, angrily attempting to suck on it before she throws it across the room and screams.

We quickly were moved up to day surgery, which meant I could nurse her, but then she didn’t want to. She was so angry and uncomfortable. Kyle took her and rocked her asleep and she stayed on his chest for quite awhile. When she woke up, she was furious. She kept fighting us, arching her back and yelling and I tried to nurse her but she would get angrier. Then I realized she had begun wheeze and it just kept getting worse as her breathing sounds turned into honking noises interspersed with raspy, hoarse cries. We called our nurse in and she turned Londyn’s O2 monitor away from me as she called the anesthesiologist. She came in and without even placing a stethoscope on my child’s chest or listening for more than 5 seconds, stated, “she’s not wheezing.” My nurse just nodded, “YES, she is.” And then the anesthesiologist heard the stridor breathing and ordered an IV steroid to reduce Londyn’s airway inflammation. The medication did its job and eventually Londyn calmed down and her wheezing subsided.

It’s difficult to put into words how terrified I felt. As nurses our goal is always to prevent complications. Complications eventually all lead to death, so that’s where my mind goes. And airway swelling tops the “Oh crap” list for maintaining ABC’s (airway, breathing, circulation).

I thank God the nurse we had was wonderful. She had been told I was a nurse and treated me like an equal and spent time talking to me to make me feel okay. She was so attentive to Londyn and had such a sweet spirit. By the end of the day Londyn was smiling at her more than at me.

We were finally discharged after Londyn nursed a few times and was acting much more normal and calm. We headed home anxious to see Grayson and so thankful Kyle’s parents had come out from Ohio to hold down the fort for us. 

With Londyn asleep for the night, Kyle wrapped me in his arms and told me I did a great job. (This was very generous, as most of my anxiety came out in snappy comments to him!) I cried as I explained how much I feel DDH has robbed from us- Londyn’s babyhood, all her milestones, seeing her sweet legs, baths I’ll never get to give. Kyle replied that he doesn’t feel that way- she will still get to reach all her milestones when she’s out of the spica and we will celebrate with her then. So we press on.