amaya at lake

amaya at lake

Saturday, April 14, 2012

Fixator stopped "fixing"

     Last night we noticed that the rod on the fixator was very difficult to turn. In fact last night, we couldn't turn it at all. This morning Josh tried again, and was able to do one turn, but with a lot of effort. It's normally not that way. Usually we put the wrench in, push the blue button then turn it. But yesterday afternoon it started sticking and then last night it wouldn't budge. We were moving her entire leg each time we tried. I put a call in to Dr.Nelson's nurse then went about our day (with a looming wonder and worry in the back of my mind). I knew we had to get it taken care of today, because we can't afford to miss a day, let alone a weekend of turns.
     At physical therapy I showed Melissa and asked her if she had ever seen that with any of the other lengthening patients. She tried turning it and after much effort was able to do one turn. She said it wasn't something she had seen before and suggested that after our session we head over to Dr.Nelson's office (only a couple of blocks away). She said that she thought he was in surgery today, but that his nurse or The residents could help us.
      During her session Amaya worked hard and was determined to do everything asked of her. Kim pointed out that she could see the determination in Amaya's eyes. When they were bending her knee it started to hurt, and they asked Amaya if they could try again to see if they could get a higher number. "One more?" They asked her. Amaya willingly said, "okay." Knowing that it would hurt, but hoping to get a higher number. The first time she got 102 then was able to get 105. Melissa said that once Amaya gets clearance to fully bear weight she'll start using the bike during her sessions! Which should be fun for Amaya and a nice change of pace. She said it'll be hard work at first, but a great exercise. She asked if we had a bike to use at home with training wheels on it, so that she could also work at home (we do).
     After our session we headed over to Dr.Nelson's office. I knew we would have a wait so I put a water bottle and snacks in my bag, stopped by the bathroom then headed in to the office. The receptionist informed me that Dr.Nelson was in surgery, and so were his residents. They took us back to the cast room to see the lady that had changed Amaya's gauze several weeks ago. I showed her how the fixator rod was stuck. She asked if maybe we were done with our lengthening and that's why the rod stopped. I informed her that no, we were only about a third of the way done. Then she said we should try WD-40. I figured it was worth a try. So she tried it and no luck. It was wedged tight. She said she would page Dr.Nelson and then see what he suggested. We waited an hour (I was so glad we had gone potty and had snacks) to hear back from him. While we waited we saw a five month old baby get his legs casted. He cried and I could see how upset his parents were. The girls empathized for the baby, and I for the parents. There was also a girl and her mom waiting to get the girls cast cut and adjusted. The mom said that as long as her daughter didn't have to have a nail in her leg she'd be okay. But then looked over and realized that Amaya had a fixator she asked us what it was. I told her that it was and explained that Amaya had  nine pins. The mom almost freaked out. It's funny to see people's reactions.
    After Dr.Nelson called he talked to Maggie (that's the lady's name who works in the cast room) he told her that the rod part that does the turning needed to be replaced. He asked her if she had the parts their to do it. Although she had many fixator parts, she didn't have the kind we needed. But, Dr.Nelson said that the rep from Orthofix (the company that makes Amaya's fixator) was with him in the operating room so he would send him over to see us (it's just across the street). I had been sending texts to Josh with updates and let him know what was going on. I asked if he would come join us since we had already been there an hour and a half, Amaya was getting nervous and Lidie was getting antsy and we weren't sure how much longer it would take. Thankfully he was able to leave work and join us. When the Orthofix rep came in he was so nice and kind that he immediately eased Amaya's nerves. I wished I would have gotten his name. Kind people really make this journey bearable. He started talking to her about his kids and asked her what kinds of thing she liked to play with. She showed him the picture of her Barbie with a fixator and he thought it was very cute. He took the bar off, said it was tightened as much as it could so he unwound it and then moved it to a new spot on the fixator. I asked if we should expect to have to do this again and he said that we should ask Dr.Nelson, he wasn't sure about our treatment plan. He said that he was in the operating room when Amaya had her fixator put on. He said that Dr.Nelson knows what he's doing, but that he's in the operating room in case Dr.Nelson has any questions about the actual fixator. Before he left he took a picture of the fixator to show Dr.Nelson the adjustments he made to it. I was glad that this all happened before the weekend. Although it took two hours, it was well worth the wait. On Monday we have our appointment with Dr.Nelson so he can check it out then (even thought I found out while we were there that our appointment wasn't scheduled after all, so we had to make a new one).  Before we left I asked the receptionist if Amaya's prescription had been processed. She said that the request had been denied, so she had a nurse practitioner talk to me about the medication. She said that we really need to wean Amaya off of the Tylenol w/codeine and onto children's Tylenol. She said that the codeine makes her tired and messes with her mind and that after awhile Amaya gets immune to the pain medication. I told her that we had a hard time controlling Amaya's pain this week and that we wondered if her pins were infected. She looked at the pins and said they all looked great. She reviewed the doses and said that Amaya is at the border of doses (from 3-6 they get one dose but from 6-? I forgot the age gets a higher dose). She said that we could up the dose to the higher one, but try to give it less often. She said that we want to make sure to not over medicate Amaya. She gave us a prescription with less medication. We went to two different pharmacies to try to get it filled, but both were out and wouldn't get any until tomorrow. We left it at the second one and planned to pick it up tomorrow. We didn't want to stick around too long, because we knew snow would be coming soon. We made it home safe and sound, but cold and tired and ever grateful that our mini-crisis was taken care of.

Amaya holding Lidie on her lap this morning. Amaya said, "Lidie you're on my fixator and it doesn't even hurt."
Amaya working "with a very determined look on her face" to pull herself with her left leg. 
The lady trying WD-40 on Amaya's fixator. It was kind of weird sight, and very smelly.
Amaya waiting in the cast room for her fixator to be fixed.
The rep from Orthofix working on Amaya's fixator.
Here's what her fixator looked like without the rod. It's normally between the two sets of pins.
And here's what it looks like now. This was her at bedtime. You can see the rod is the one with the white paper on it with the two arrows. It's a lot smaller than it was before.
And here's a close up photo of it. 

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