amaya at lake

amaya at lake

Tuesday, April 10, 2012

Wondering, worrying and stressing

     Last night and this morning I started wondering and worrying then stressing if maybe Amaya had a pin site infection. If maybe that was the cause of her knee pain. It didn't look like it was fully infected yet, but maybe an infection was starting. There are some signs to look for but, its always hard to say. I looked up some information online and it sounded like she might. Josh agreed with me so we decided to keep Amaya home from school. It doesn't make much sense to send her when she's in so much pain and not comfortable. Staying home allows her a chance to rest. I called the pharmacy to fill her prescription for antibiotics (we have two on standby for when she needs them). The automated message said that they'd be ready tomorrow. Which made Josh and I stress even more. Shouldn't we have the medication now, start it today? How important is it to start it right away? Would it really take that long? Unanswered questions lead to worry and stress. The last thing we need is more worry or stress in our lives. Our plates are full and we all feel pretty stretched, especially Josh and myself.
    When I took the girls down to physical therapy we left early because our house phone stopped working (more stress) and we needed to look for a replacement part and then I had to make some phone calls. I couldn't find a replacement part (more stress) and it looks like we'll have to buy a whole new phone/answering system (ugh! more stress and money!). I let the girls play at the playground at the physical therapy department while I called to check in on the prescription and to call Dr.Nelson or his nurse to ask about the possible pin site infection. They were unavailable so I left a message and a number to be reached at. I also realized that Amaya's pain meds are almost gone and needed refilling so I called in that prescription as well. While the girls were playing Amaya showed her bottom pins to Lidie and asked her "Lidie are these awesome or disgusting?" Lidie laughed and said "disgusting" Amaya said "No, I think they're pretty cool." Wow, what a change of attitude. I knew she'd come around. I asked Lidie if she really thought they were disgusting or if she was teasing and she said, "they're not disgusting, but they do make blood inside your body."
    We went into our appointment with Melissa and I told her my concern about the pin site. I showed her the pictures I took of it last night and she said it didn't look infected yet and let me know other things to look for. My nerves were calmed a bit, but I still wanted to talk to Dr.Nelson or his nurse (because I want an answer/reason for the pain that doesn't seem to go away in the knee). During therapy Kim (an intern) did the stretches with Amaya today. She said the muscles were tight in Amaya's leg so they worked the muscles and stretched them before they did the bends. She was able to get Amaya's knee to 102 degrees. Melissa had Amaya practice walking in the walker since she's fallen twice and we want to (obviosuly) avoid that. Melissa reviewed some safety things and common sense stuff (like not letting go of the walker to fix your sock). Melissa got the paper work ready so that we could schedule Amaya's next thirty physical therapy sessions (another six weeks in addition to what she's done now). I tried calling in to schedule it, but they gave me grief and said I needed a therapist's approval (more stress). Thankfully Melissa got things in place and after our appointment we went  over to scheduling to get our appointments. On our way there Melissa said that Amaya will continue to have physical therapy on a daily basis during the lengthening phase (about three to four months long). During the consolidation phase (after lengthening is complete and the femur is hardening) she will still have physical therapy but not on a daily basis, maybe three times a week (depending on how she's doing). Once the fixator comes off Amaya won't have any therapy for about four to six months, to allow the holes in the bones to heal then she might have more therapy at that point depending on how she's doing with gross motor activities.  Scheduling the appointments turned into a two hour long frustrating process (yep, two hours!). The girls did exceptionally well, considering. Thankfully I had snacks in my bag, but poor Amaya was in pain and very uncomfortable. The first lady we talked with was a bit of a ding dong (can't think of a friendlier word for her than that). She asked some silly questions, like "are you sure you want to come so often? wow, I guess she is going to walk and get up out of that wheelchair isn't she? Has she walked before?" She was very annoying and I tried my hardest to stay calm. After she was done and had things in place, or so she told me. We left, but I didn't trust that ding dong so I double checked my paper and sure enough she only scheduled fifteen appointments, instead of thirty. So we went right back in asked her about it and she gave me a lame excuse then said she didn't know. Oh, man we were ticked! Me and Amaya that is. Finally we talked to another lady who was way more competent and helpful. But we had to go down the hall to the referral office to fix the referrals. Thankfully the lady in there was helpful and kind and helped us out. We went back to the scheduling office to fix our appointments and we had to wait thirty minutes to be seen. Finally we had our stuff taken care of, but two hours is just nuts! Sorry for the long drawn out explanation, but it gives you a sense of what we had to put up with today.
    By the time we got home we were tired, hungry and exhausted. When we got home I got a call from Dr.Nelson's nurse, but on our house phone (that isn't working). We could hear her message, but couldn't pick up the call (so frustrating!). I tried calling her back on my cell phone, but reception is pretty bad in our house. After about ten minutes I finally got a hold of her. I described the pin site for her. She said that we could come in if we wanted to, but that it sounded like the beginning of a pin site infection to her. So to save us a trip to the office and a long wait. We could just start antibiotics and then when we see Dr.Nelson on Monday we can have him take a look at it. So that's what well do. Tomorrow I'll pick  up the antibiotics and pain meds then start Amaya on the antibiotic and hopefully the infection won't get any bigger and her pain can be minimized.
    It seems like wondering, worrying, and stress are a part of this journey. More so for us parents than for the girls. We wonder if we should send Amaya back to school, when to do that? how often? We wonder and worry if we're doing the best for both girls at all times. It's just not an easy journey, but we keep on going. Wish us luck!

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