Amaya's Journey with PFFD: First bath

Today I woke up and knew what I had to do; give Amaya her first bath. After yesterday's tough gauze changing and pin site cleaning I knew I had to be prepared (mentally and emotionally). I knew we had a busy day and would have to do her bath before physical therapy (at two today). I gave Amaya some space to eat breakfast, watch a movie and play. I used this time to sweep, mop, do laundry, clean and disinfect the tub then prepared my tools for the bath (gauze, towels, antibacterial soap, and new clothes). One thing we've learned these past few weeks is that you can't just do something; there has to be a plan and preparation for a successful transition. I began by talking with her; I explained what I was going to do, how I would do it and reminded her why we had to do it ( to prevent infection). She began crying. She said she was very scared and nervous. She kept crying and stalling (asking questions, telling me she didn't want to do this, asking if we could postpone it, asking if a sponge bath would do, saying she didn't like her fixator). Each time I tried to touch her she started to freak out. After thirty five minutes I knew I just had to do it. I told her I loved her, what I would do and said I would be starting at the count of ten. I reminded her that I needed her to cooperate so that we didn't have any accidents getting in and out of the tub. She began crying more and as I offered some last comfort I began removing the gauze on the bottom pin sites. It came off easily. She was pleasantly surprised how quick it went; this calmed her a bit and allowed her to cooperate a bit more for the second set of pins. I unwrapped those then tried to do the last three. The highest pins had lots of drainage overnight so the gauze was stuck to her leg. As I started to remove the gauze I knew it would hurt her too much to just pull it off like that. She was in tears and yelling out in pain. I told her that I wouldn't do anything until we soaked it in the tub (I remembered reading in another PFFD blog that this helped them remove gauze). Since she can't stand yet I had her sit on the floor of the tub while I cleaned her off. She was very nervous to see the pin sites, and was holding a washcloth over the sites so that she wouldn't have to see them. The shower went by quickly, after she was cleaned I washed the fixator and pin sites (put antibacterial soap on the sites then used the water to wash the areas; using a removable shower head was so helpful) then I tried to remove that gauze again. It was a lot easier now that it had soaked, but because of the position she was in the tub, and how close the fixator is to her thigh it was hard to unwrap that last piece of gauze. It was painful for her and very nerve racking for me. She started crying and asking for her dad and wishing he was here with her ( I did too). As soon as it was off I lifted her up and sat her in her wheelchair (there was a towel layed out there to keep it dry). I wrapped a second towel around her then took her to the living room. I dried her off then began to dress her. Then she asked if she could play her DS while I put the gauze on. What a great idea! I agreed because it was such a good distraction. As I wrapped the gauze on the lower pins she began to relax more. I did the one above her knee next then started on the upper thigh. The yucky pin site was still very yucky. This site was the hardest to wrap; because of how sensitive the area was, and how close the fixator is to her thigh. I asked her to lift her thigh up a bit so that I could squeeze the gauze between the thigh and fixator. Her lifting helped a lot. As soon as I finished I could see her body relax. I was flushed, stressed and worn out. Then in her sweet voice she said, "Mom, you did such a good job, you're better than that lady was. You were so gentle. You should be a nurse." I just smiled and felt so filled with love. I said "are you sure? Because you were freaking out so much I thought I was doing a terrible job." She smiled and said "no, you're good." She spent thirty five minutes stalling and it only took forty minutes to change the gauze, bathe her and dress her. We talked and I reminded her that it would get easier each day. After that she had time to recuperate, eat lunch and watch a show before we left.
Today we started her on her antibiotics and are continuing her tylenol with codeine. She's been asking for the pain medication pretty regularly. I wonder if the pin sites are bothering her, it's hard to say. She points to her hip area but, I can't tell if it's the irritated pin site, the incision on her hip, or the actual hip that's causing her pain.
Today was the first time we used our disabled parking placard. It came in handy and made getting out of the car so much easier! I'm so glad we got one. Even Amaya noticed the difference; she asked how we got to park in such a big space. I explained what disabled parking spots were and she thought they were a great idea, I agree. Today at physical therapy Amaya did great! She worked with Lisa (the therapist we saw last Thursday) again. Lisa was impressed with Amaya. She said she could feel the hamstring muscles working as she would lift and lower her leg. Amaya was able, for the first time, to hold her left leg up off the table. We were so impressed. She wasn't able to hold it long enough for me to take a picture, but I was so happy to see it. I clarified with Lisa that Amaya can't fully bear weight yet. She had Amaya practice using the walker. Amaya would put her left leg down without putting her weight on it. It served mostly to help give her balance. Lisa was also impressed with how well Amaya is transferring in and out of her wheelchair. Lisa also got Amaya to lay on her right side and move her left hip. I suggested that we try laying her in that position when we need to change the gauze(we have easy access to the pins and the fixator doesn't push up against her skin), Amaya said she'd be willing to try it.
Thank you for all your love and support. Today we came home to some cards and flowers on our doorstep, picked up meals from my aunt's house, had several messages on our phone as well as on Facebook. It is so nice knowing that we have so many people rooting for us. Although we have some tough times ahead, I'm realizing that they are only moments. They pass and then we move on. Our days are filled up with many good, calm, loving, normal moments as well, and for those we are so grateful.