amaya at lake

amaya at lake

Friday, January 21, 2011

Has it really been two weeks?

     The past two weeks have been a blur.  Time has passed so quickly.  The first week post surgery was pretty tough; mostly because we had a hard time getting Amaya's pain under control and getting  her comfortable. The first night in the hospital was the worst. Mostly because the nurse assigned to Amaya gave her children's Tylenol for pain management. After hours of restless pain, Josh demanded more pain medication. The nurse finally gave Amaya Valium and morphine. That did the trick! Amaya was finally able to sleep and recover.
     This week has been a lot easier (even though we had to move over the weekend). Amaya even went back to school.  I wasn't sure if she was ready, but she wanted to go.  So I went with her on Tuesday and showed her teachers how to move her in and out of her wheelchair. She did great! I was amazed at how smoothly she transitioned back into school.  All the preparation that her teachers (they are amazing!) did prior to the surgery payed off.  It was nice to see her friends being so kind and thoughtful. They moved chairs for her to get by, included her in tasks (even cleaning up beads off the floor), and would ask if she needed help, instead of assuming that she would want it.
     Amaya has handled the situation so wonderfully. I am so proud of her;  she has been brave, kind, empathetic, self aware, and accepting of her body.  The past two weeks have drained Josh and I and have kept us in survival mode.  As things ease up, we are now beginning to catch up on sleep.  We have been sustained by the kindness and help of so many, both family and friends. Thank you all.  Josh's co-workers prepared meals for us to last several weeks, and it has been so nice not having to worry about what we will eat.
     Amaya is now wearing a pink cast that covers her full leg (from her upper thigh down to her ankle), this has helped so much in relieving her pain and discomfort. It is easier to move her and keep her comfortable. We noticed a huge difference once she got the longer cast (her first cast only came up to her mid thigh, and was pushing in on her upper incision). That very night she was able to roll in her sleep with no pain or discomfort and two days later she was completely off all pain medications.  She will continue to wear this cast for two more weeks and then go see her doctor to remove the cast.  Dr. Nelson said that Amaya should be able to walk after it is removed. Depending on how she adjusts to her new ligaments she may need to do some physical therapy.  Dr. Nelson was very happy with the results from the surgery. One of the assisting surgeons told us that when they opened up her knee she didn't have any of the ACL ligaments (something he hadn't seen before), but he was impressed with how Dr. Nelson was able to use her own muscle to create them for her.  During the super knee procedure Dr. Nelson used the fascia lata muscle from Amaya's thigh to create her missing ligaments. To prepare for the lengthening surgery the fascia lata muscle is removed because it doesn't lengthen like the rest of the muscles and tissues in the leg do. Instead of just discarding the muscle, Dr. Nelson was able to use it to create ligaments for Amaya. That's pretty amazing! 
     We are so fortunate to have Dr. Nelson here in Loma Linda, few doctors know how to perform the super knee surgery.  The timing has been wonderful; Dr. Nelson came to Loma Linda in August 2010 after being in the Dominican Republic for five years.  During his time in the Dominican Republic he served as the medical director of CURE International Hospital in Santo Domingo.  During this time Dr. Nelson occasionally partnered with Dr. Paley (the doctor who created the super hip and super knee procedures) and had a six month internship with him.  
     We were also fortunate that Amaya didn't have to be in the spica cast (it starts at the waist and goes down to the ankles).  After reviewing her file, the night before surgery,  he decided she didn't need the super hip procedure (the bones in her hip are in good shape). The knee was his biggest concern right now. Later when he does the lengthening surgery (in about one year) he will correct the leg shape (it turns a bit above the knee) and correct the hip as well (the muscles around the hip restrict her hip movement).
    It's hard to believe that she as an individual and us as a family have had to endure so much in such a few short weeks, but we did, we had to, and we weren't alone. So once again, thank you!
This was when we were leaving the hospital


This was in the hospital, the flowers from her friend Mason made her day


This was our first day home. Her cast is covered with an ace bandage to protect it.


This was one of those moments when she was not so pleasant.

Thursday, January 6, 2011

What to expect from here...

      After Amaya's surgery she should be in the hospital for about two to three days, it just depends on how quickly she recovers.  They will give us a harness of some sort to use to transport her in the car since she won't fit in her normal car-seat.  She has a follow-up appointment next week on the thirteenth, to see how she's recovering.  She will be in her cast for about six weeks, a friend from school gave us different colored sharpies, so that people can write on her cast. She is looking forward to that, as are her friends.  During that time she will have to have sponge-baths and wear diapers (they get tucked in under the cast) to help keep the cast dry and make sure it doesn't get soiled.  She will probably be in dresses and skirts, as they are the easiest to go on over the cast.  We also have some hand me down sweats, in larger sizes, to go over the un-casted leg to help keep it warm.  We are hoping she'll be able to go back to school soon, but not exactly sure when that will be.  She did get a lot of games, toys, and art supplies to keep busy while sitting down.  And her teacher gave her a desk/tray to use in bed or on the couch.   Hopefully she'll have enough to keep her mind busy, distracted, challenged and entertained.  Amaya will also have a wheelchair during this time to help with her mobility.  Once the cast comes off she'll have to do some physical therapy to strengthen her leg and hip and gain back some of the mobility. We're not sure if she'll still be using her wheelchair then or a walker or nothing at all.  
      Her surgeon said that the expected recovery time (in total) is about three months.  This includes the time in the cast, wheelchair and physical therapy.  So, please keep sending your positive energy, prayers, love and support to help sustain us as the recovery tends to be hardest on the parents (that's what we've heard from other parents), and we've got a bit of a long road ahead of us.
     Thanks again for all of  your love, kindness support and friendship.

On the eve of surgery...

     Okay so here we are, the three month wait has finally come to an end. Today we had Amaya's pre-op appointments with her surgeon and the anesthesiologist dept..  We had to wait two hours for the surgeon, because they were trying to squeeze us in, since we missed our appointments on Monday (we were snowed in).
     On the drive Amaya started to show some signs of nerves and anxiety, but the two hour wait seemed to distract her and calm her down.  She was also able to see other kids in casts, crutches and wheelchairs.  Once we got in, she did great.  Dr. Nelson said that the good news is that the bone structure in her hip is so good that he doesn't have to do a full super hip procedure. Usually they have to cut the bone and re-align it. But in her case her bone structure is so good that he only has to cut some of the muscles to allow for more rotation and mobility in the hip. The next part of the surgery involves cutting her thigh muscle and using it to create the ligaments that she's missing in her knee.  He said that she would be casted from the waist down to the toes on the left leg, but didn't think he would have to cast the right leg.  He's going to cast her in a reclining position between sitting and lying down.
     The surgery she's having tomorrow, the super hip super knee, is to stabilize her hip and knee in preparation of the lengthening surgery that he will do in about 6 months to a year.  I'm confident in him and his knowledge about her condition and his ability to correct it.  So the appointment was reassuring, helped answer some questions and calm some nerves.
     After that we went to the anesthesia dept. and they did a physical and screening for tomorrow. Then gave us information about tomorrow. We check in at 10:30 tomorrow and begin lab work and registration.  Her surgery is scheduled for 1:10 pm at the Loma Linda Children's Hospital.  Surgery is expected to last about three hours and then she'll spend about two hours in the recovery room before she gets put into her own room.
     She can have visitors once she's stable and in her own room, but since that won't be until late Friday, Saturday would probably be the soonest she can have visitors. You can call the hospital or us to see if she can receive visors yet. We still do not have a number to call or when visiting hours are.  But they did say the no one under the age of 14 is allowed to visit, not even Lidie.  You can also call or text us. We might not have reception inside, but we'll try to go out and check our phones often. And I will update facebook as we know more. They said they will give us a pager once she goes in and send us updates as things progress. I'll pass that information on as soon as I get it, either by text or facebook.
     Thank you all for your kindness, patience, understanding and support. It makes getting thru this so much more bearable.
Martha