1 Corinthians 13:13

And now these three remain: faith, hope and love. But the greatest of these is love.

Wednesday, January 30, 2013

Catch up 3

Clubbed Feet 17 months old
Precasting in prep for bilateral posterior tendon release surgery

What standing up on clubbed feet looks like
17 months old- Rachel has been pulling herself up and standing since December 2012. This picture is a good indicator as to why surgery was so necessary. Her feet did not respond to the typical serial casting, heel cord releases and AFO's that are traditionally used to treat clubbed feet. In prep for surgery Rachel had 3 sets of cast placed to help stretch her feet. In children with spina bifida and clubbed feet it is typical to find that they only have one artery in their feet verses 2 arteries like a "normal" foot would have. One of the risks of the surgery is circulation problems due to only one artery supplying the foot with blood. (Makes sense now why our little ones with spina bifida and clubbed feet typically have cold feet)

Another view of clubbed feet being stood on- Rachel loves her big sister Alicia!

Cast set #1 in surgery prep

Cast set # 2 in surgery prep

Cast set # 3 and surgery day January 24th 2013
Wearing casts has not slowed down Rachel- she continues to four point crawl in them and has managed to figure out how to stand in the casts. She somehow plants her toes down and stands ballerina style. Rachel is a very determined little girl. Instead of all of the casting she had received in her lifetime slowing her down- she has used them as strength training tools. Prior to beginning the surgery prep casting she had also been going swimming at the YMCA. Once in the water- she is an equal to her peers and she immediately began to doggy paddle and move in the water with grace. (Yes- as soon as all the casting is done- this girl is starting swimming lessons)

Left foot after posterior tendon release surgery

Right foot after posterior tendon release surgery

Both feet after surgery- notice the positioning of her feet in the casts. Beautiful! We are looking forward to seeing the results. Her orthopedic doctor is predicting 5-6 weeks of follow up casting. After the casting is done she is going to special bracing made- per her ortho he does not want to go with the Ponsetti bar and Dennis Brown shoes due to the severity of her clubbed feet. Our follow up appt is on February 4th- at the follow up appointment- he is predicting that he may need to add a few stitches to her incisions.

Yes- that is Rachel a few hours post op trying to figure out how to escape her hospital bed. What I wanted to show was the bleeding through the casts. This is a very typical expectation with the posterior tendon release sugery- some children may have only a small spot of blood come through their casts while others may have blood all the way up to the tops of their casts. The bleeding is related to a pocket of blood being in the surgerical area that has "wicked" its way out. In other words- it looks worse than it is. Per her orthopedic doctor he had to remove a lot of scar tissue in both feet and manipulated some nerves and the artery and some of the displaced bones. No bones were removed as had originally been a possibility. We frequently check the circulation in her toes and have been trying to prevent Rachel from standing up. She needs to remain nonweight bearing on her feet.  

One of the cutest and busiest patients ever!

Three days post op and Rachel is trying to figure out how to climb up on our exercise bike. To her defense I do sometimes place her on my lap and position her legs on mine and we ride together. I get the bonus of extra resistance and she gets the bonus of gentle ROM exercise to her legs.


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.

Catching up

Rachel May 2012 9 months old

May 2012 Preparing for more club foot casting

Clubbed Feet 9 months old after
2 weeks of serial casting before bilateral heel cord release

June 2012 10 months old
Hip spica cast after left hip tendonectomy and closed reduction of left hip
Used to treat hip dysplasia
Hip spica cast was worn from June until October 2012
Rachel received a total of 3 different hip spica casts- each one required her to be under anethesia
Unfortunately during this time period her clubbed feet were left untreated due to the hip spica cast.
For other parents with a baby going into a hip spica cast- Rachel did not fit into any traditional baby equipment- no strollers, no highchairs, no bouncy chairs, no wagons and ect. My grandmother had bought Rachel a pack and play that we used with various pillows to prop her during this time period. You need to reposition your little one frequently to avoid pressure sores forming from the hip spica cast. Lots of sponge baths and yes, the cast becomes very stinky. Rachel was learning how to self feed during this time period- highly recommend skipping the cute light colored casts and going for dark blue, dark purple or black casting.

During her summer in the hip spica cast Rachel did a lot of hiking our family. We had used the Infantino baby carrier and would alternate positioning her on Mom's back and Mom's front.Rachel loves being outdoors and hiking would seem to make the hip spica cast alittle more bearable for her. We did most of our hiking on the cooler summer days to avoid Rachel from overheating in the cast.

After Rachel's hip spica cast was removed at the beginning of October 2012, her orthopedic doctor had her start wearing a Rhino Cruiser brace. She wore this brace 23 hours a day for the first month out of the cast. After a month the Rhino Cruiser brace was reduced to wearing during naps and at night while sleeping. She currently continues with this brace (Jan 2013). She had been diagnosed with bilateral hip dysplasia- prior to the surgery on her left hip- her right hip had corrected itself and did not require surgical intervention. On her x-rays there was basically minimal to no left hip socket- her body has been working hard and she continues to grow bone in her hip sockets. Rachel has always been a tough cookie- during her time period in the hip spica cast she continued to roll herself over and was able to support her upper body on her arms and pull herself forward. One month out of the hip spica cast she -retaught herself to sit up on her own and was a warrier four point crawling.