PT and rehab had been talking it up for awhile, we wanted it done well before kindergarten so that rehab was done by the time she was off to school on her own. Also, the neurosurgeon who does them here is rumored to be retiring soon and we wanted him. The St. Louis Children's hospital website has great information on SDR for parents wondering if it's right for their kid.
http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr
Pre Surgery:
So, the past few weeks have been kind of crazy- met the neurosurgeon who said GB was a great candidate (tried to coordinate surgery with eye muscle surgery that she needs as well but it couldn't be done), had an MRI on her head to monitor the hydrocephalus (totally stable and under no pressure, YaY!), met with rehab doc to discuss surgery, met with PT/OT to talk about pot op rehab, MRI of the lower back to visualize her spinal cord and then finally surgery yesterday....
We talked a lot about the surgery with GB beforehand. She knew she was having surgery on her back and that there would be an "owie" on her back and left leg after surgery but that we would give her medicine to help. We talked about her wearing a diaper again for a few days to go potty and laying in bed and watching a lot of movies. We also wanted her to be prepped for how lefty leg would be different so we talked about needing to hold on to a "toy" to walk again after surgery and lefty leg needing to re-learn how to walk. We basically tried to prep a 3 year old about as much as you can before something like this.
Surgery Day:
Surgery day went about as smooth as it possibly could. Our OR time was early so the whole not eating thing beforehand was easy this time. Her biggest thing pre-op was when I had to wipe her down before putting the hospital jammies on, we thought they were regular wipes but whatever the cleaning solution was burned her and turned her skin red so she was NOT pleased. After that she was ok. The child life lady came to meet GB and since Daddy and I could only walk with GB to the doors and not all the way to the OR she offered to hold GB while she held the mask to her face to go to sleep.
Leaving her at the door was the hardest part for me, GB was cool- she had the Ipad on with Cinderella and was giving the anesthesiologist and child life lady play by play commentary as they walked the hall to the OR. When they called to let us know GB was asleep and they were getting started they said she talked about Cinderella the whole way up until she was out and that she did great.
In the OR, as far as attending docs, were Dr. Walker our neurosurg and Dr. Gooch our rehab doc. The rehab doc is there to do electrical stimulation of the nerves then decided which nerves to have the surgeon cut. Surgery took about 3.5hrs for everything. They only cut on the left side and cut about 47% of the sensory nerves.
Post Op Day #0 & 1
Because they did nerve cutting we were anticipating a lot of left leg nerve pains (pins and needles) as well as a lot of back pain and muscle spasms. She was left with an epidural catheter, which goes into the spinal column, and has fentanyl running in it with the ability for Jim or I to given an extra dose if needed. She also has valium available for muscle spasms. Thankfully we have only needed 3 extra doses of fentanyl so far and have only used valium for spasms twice now (just over 24hrs post op). She also came out with a urinary catheter that will stay in place as long as the epidural catheter is in (the meds can cause urinary retention so the urinary cath keeps her from not being able to pee) and a big old bandaid on her back. She also has an IV in her right foot.
She woke up like a bear from surgery but she is always like that with sedation. Once that wore off she was cranky but like I said, pain has seemed pretty well controlled.
The evening after surgery it seemed like the nerve pain in her left leg was going to be bad, she would freak out if you touched her leg at all, but as we went along she actually wanted me to massage her leg and this morning even let the rehab doc do some light touching of her leg while she was distracted, this is EXCELLENT as it seems her nerve pain is not going to be as bad as we initially thought it would be. As I was rubbing her leg I was able to move her ankle joint around (I have not messed with her hamstring muscle or her hip at all) and her range of motion is notably different, it is so much easier to get her ankle past neutral already! It is very encouraging to see and is a bit exciting for what is to come in the future!
Overnight, Jim stayed in the room with her and he let me go up and sleep in the family room. I am forever grateful for that since after my week of call last week it was actually the best sleep I've had in about 2 weeks. After I got up I was able to go to the gym (the social worker got me a free pass for while we are here and it is right across the street) which was much needed after surgery and was sooooo helpful with my stress. Jim didn't have such a great night unfortunately. GB woke up around 130a, after not sleeping all day and was just awake, thankfully not in pain! She stayed up until about 730a when she fell back to sleep then was up again about 9a. Needless to say she has been VERY cranky this morning. She seems ok when it is just me and Jim around and doing things that need to be done but gets very mad and even mean when the nurse, tech or docs come in.
Jim is at work today and then home for overnight, so he will get a much needed and deserved night of sound sleep. Today is a mommy daughter day and luckily, with the help of an extra fentanyl dose and some valium, she is now napping! I'm very hopeful that after this bit of rest she will be more like herself again with the staff here.
Will update more as things come up!
V
p.s her favorite part of this whole hospital thing is the ordering of whatever food she wants, she has basically been eating non-stop since sedation wore off!
The evening after surgery it seemed like the nerve pain in her left leg was going to be bad, she would freak out if you touched her leg at all, but as we went along she actually wanted me to massage her leg and this morning even let the rehab doc do some light touching of her leg while she was distracted, this is EXCELLENT as it seems her nerve pain is not going to be as bad as we initially thought it would be. As I was rubbing her leg I was able to move her ankle joint around (I have not messed with her hamstring muscle or her hip at all) and her range of motion is notably different, it is so much easier to get her ankle past neutral already! It is very encouraging to see and is a bit exciting for what is to come in the future!
Overnight, Jim stayed in the room with her and he let me go up and sleep in the family room. I am forever grateful for that since after my week of call last week it was actually the best sleep I've had in about 2 weeks. After I got up I was able to go to the gym (the social worker got me a free pass for while we are here and it is right across the street) which was much needed after surgery and was sooooo helpful with my stress. Jim didn't have such a great night unfortunately. GB woke up around 130a, after not sleeping all day and was just awake, thankfully not in pain! She stayed up until about 730a when she fell back to sleep then was up again about 9a. Needless to say she has been VERY cranky this morning. She seems ok when it is just me and Jim around and doing things that need to be done but gets very mad and even mean when the nurse, tech or docs come in.
Jim is at work today and then home for overnight, so he will get a much needed and deserved night of sound sleep. Today is a mommy daughter day and luckily, with the help of an extra fentanyl dose and some valium, she is now napping! I'm very hopeful that after this bit of rest she will be more like herself again with the staff here.
Will update more as things come up!
V
p.s her favorite part of this whole hospital thing is the ordering of whatever food she wants, she has basically been eating non-stop since sedation wore off!
Thanks for the update! She's an amazing lil trooper!! I'm glad her range of motion is already improving... How exciting! You are such a tough cookie V ... Wish I could be there with you!!
ReplyDelete