Catching up 2

January 30,2013

I have almost ten months to catch up on this blog to bring it back up to date- bear with me- some events in Rachel's life maybe out of order during the ten months of catch up. While I did add pictures of her hip spica cast- I did post 2 pictures of Rachel's clubbed feet. She did have bilateral heel cord releases at the end of May-early June. She only received 2 weeks of casting after the heel cord release and then went in her left hip tendonectomy and closed reduction. At the time of her hip surgery- her orthopedic doctor decided to let the clubbed feet go untreated to be able to concentrate on her hips. I think he already knew at time that she was going to require more drastic measures to correct her clubbed feet.

At the end of May 2012 Rachel's urologist had us begin straight cathing her every 4 hours. She was also started on oxybutin 0.5ml three times a day. At the time we started the catheterizing her bladder was only holding about 60ml. While she was able to void and empty her bladder completely on her own- she had a few spikes in her bladder pressures. Rachel's urologist had also informed us that several studies had proven that starting the oxybutin and catheterizing would help her bladder and kidneys grew appropriately with her general growth. I do have to admit we were not exactly thrilled to start catheterizing. At first I had to use a lighted magnifying glass due to her being so small. We were instructed to use clean technique for catheterizing verses sterile that you would use in a health care setting. Rachel had a repeat urodynamics and ultrasounds this January 2013. Her bladder and kidneys look wonderful- right on track in size and function. There is no kidney reflux and her bladder pressures have improved. She can now hold about 80-120 ml of urine in her bladder. We are still catheterizing every 4 hours- using a 8 french catheter. Rachel (knock on wood!) has not had any urinary track infections yet. Prior to each catheter we clean her with baby wipes and then she gets cleaned with one betadine swab. Being a nurse I can not just go to the clean technique completely- hence the betadine swab. Catheterizing a wiggle infant is definetely a challenge- she frequently kicks her catheter out and she has enough strength down there (discovered at her follow up urodynamics) that she can push the catheter out using her pelvic floor muscles.

Rachel had a follow up head ultrasound in August 2012. At that time her neurologist had declared her fetal surgery a sucess in the neurology department of her life. She remains shunt free and has continued to have "normal kid" sized ventricles. No signs of hydrocephalus ever !!!!!! Her neurologist had cleared her for an entire year. She will receive another head ultrasound when she turns 2.