Post Op

Surgery started a little before 3:30 pm and they called with an update about 15 mins in, then again at 5pm to say everything was going well and they were about half way through.  At 6:40 they let us know they were closing and her neurosurgeon, Dr Petronio, came out to speak with us probably about 7:30pm and said she did great and all went as planned!  A LONG 4 hr surgery!  The procedure involves identifying which nerve rootlets are causing the spasticity using electrical stimulation and he was able to cut about 37% of her nerve rootlets which is right in the range he expected. Her incision is about 3-4 inches in mid-lower back but covered with a bandage.  She had minimal blood loss and did great breathing etc.  He talked to us for a while regarding the longer term benefits, temporary tingling in her legs, and discussed her recovery time and time to get back to baseline (~6 months), etc.
It took a while to get back to the PACU but we finally got to head back and she was still very sleepy and woke up a few times crying and in a lot of pain.  She kept asking us to take her shoes off (but wasn't wearing any of course) so thinking her legs/feet were maybe tingling or painful- taken care of with a couple of extra doses of valium which made her very slow to wake up and required a longer time in the PACU.  I believe she is on some form of morphine also for the pain.  We made it up to her room in the rehabilitation unit around 10:30pm, got her all settled and she is now heavily medicated to keep her comfortable and sleeping peacefully.
It was long day but thank you again to everyone for all of the thoughts and prayers, texts & messages!

Surgery Day 1

As we were pulling into the Gillette parking garage this morning I saw this sign "Something Wonderful is about to Happen", I am not usually superstitious but I'll take that :)

Morgan did GREAT this morning, didn't ask for food once, told me she was "excited" on the way here until we got to the waiting room and then she admitted she "was a little nervous".  She gave Boozle some MRIs in the waiting room and was on a roll with the nurses as we waited in the prep area (making up & singing songs) and just a chatterbox having fun despite about an hour delay.  Pat and I were both able to bring her into the surgery room and this is where she lost it for a min but quickly got the mask on her and off to sleep she went...

Started 2:25pm so will update in a few hours after she is out.

Gillette's Acclimation

We spent the afternoon up at Gillette's with Morgan for several appointments - OT pre-op assessment, ATP fittings for prone cart and knee immobilizers, labs (painful), and a tour with the a child life specialist.  She got to see the room we will stay in for the next several weeks and learn about the facilities, Ronald McDonald House, all of the fun activities they offer the kids, her daily therapy & school schedule (Mon-Sat) etc.

The surgery is scheduled for 1:15pm tomorrow afternoon (Wed) and we have to be there to check in at 11:15 am.  SDR surgery is expected to last for 3 1/2 hrs and will be in post-op for a bit until she is awake and then up to her room in rehabilitation unit where we will stay.  She will have to lay flat on her back for ~3 days and then on Saturday should be able to get on the prone cart to get out and start moving a little.
I will post updates after surgery starts and following tomorrow.  If you sign up for email alerts on this blog I think they are a day delayed so can just check back for updates!

Now off to pack our bags and get her in the Dyna-Hex bath.  She will get another bath in the morning.

We also want to thank so many who have reached out to offer help and thoughts/prayers, so grateful to have amazing family and friends to help, to sister-in-laws for setting up a meal train and everyone contributing!  Please continue to send good thoughts and prayers for the gifted hands of her neurosurgeon and for Morgan and a speedy recovery!

Preparation and Morgan's perspective

Somebody asked me the last time Morgan had surgery "does it get easier?".  I think this memory and question stuck with me because it caught me off guard and I think I froze for a minute and then politely responded with something like "not really".  I realize this person had good intentions and surgeries/complex health issues wasn't something they had been through with their children (thankfully).  What I really wanted to respond with is "NO!!!!!".  Well this was a few years ago now and was just reflecting on how this surgery feels a bit more scary.  I am not sure if its because we have had a lot more time leading up to it (her last surgeries were mostly emergent), if its because it feels a little bit elective, or if its just harder to prepare Morgan because she is older and understands now.  Or maybe a combination of all three.
So what have we talked about to prepare her for this?  We have tried to be completely open and honest and explain it as best we can.  I did buy her a book that I would recommend for any child undergoing SDR called "Sir Dr. Park and the Dragon, Spasticity" by RG Smith.  It was written by a mother of the real Alex who had SDR in 2012 and a cute way to help her understand.  She also has had some questions randomly come up and we had a little Q&A last night so thought I would capture these in her blog (Morgan's perspective).

Morgan (Saturday in the car): After they cut a hole in my back are they going to put stitches in so the water doesn't come out?

Me:  What do you want to bring to the hospital?
Morgan: My baby alive doll (baby Linda).
Me: that's all?
Morgan:  Well and Boozle (Her hydrocephalus bear who attends all her medical appointments with her) my blanket and boogers (her blanky).  But you have to fix Boogers neck (it is well loved and hanging by a thread) because you don't want the doctors to think he is broken.

Me:  What are you scared of or nervous about?
Morgan:  Nothing

Me:  Tell me about the surgery, what are they going to do?
Morgan: Cut my back open and put stitches in, then its going to help me walk.

Me:  How long do you think you will be in the hospital?
Morgan:  22 days  (she said this as a matter of fact so maybe she's anticipating a shorter stay :))

I think she has it down!
Here is a BEFORE video also of her walking, excited to compare later to the AFTER!

MRI & Shunt Tap

This morning we arrived at Children's ~7am for her sedated MRI & shunt tap.  The pictures are the before and after the IV placement, the during was a bit traumatic!  They can never find a good vein and I try to warn them but got it in after multiple attempts and additional pain spray (that was a new one).  At least Morgan was able to find a good vein on her Hydrocephalus Bear, Boozle.

We brought her back for sedation kicking and screaming a bit and I held her as she dozed off.  The MRI took about an hour and I met with her neurosurgeon after and he tapped her shunts (insert needle into the shunt valve to pull Cerebral Spinal Fluid from in order to measure the pressures) and reset them after the MRI while she was still sleeping.
Her brain MRI shows stable and slightly decreased ventricle size which is great, her pressures are both measuring as expected which means the shunts are working as expected.  Could be a little low so if she starts to get more headaches we may increase the setting a bit. Her spinal MRI gave him a good picture of her spinal cord and he does believe he can do single level laminectomy at the conus which is least invasive and hopefully allows her to be on the shorter end of the recovery spectrum :)
Overall exactly the results we were hoping for her to be best case going into surgery and Dr Petronio reiterated he thinks she is going to see some very positive results from this.

Morgan needed a little bit of oxygen while waking up due to some congestion but nothing to be concerned about, just need to keep her healthy over the next 6 days!  Got her some food and water after and let her walk for a bit and she did really well and went into school this afternoon with only a bit of orange hair (residual from Betadine)!

Pre-Op

We are back from a much needed week and a half vacation in Florida (see pic) and reality of this upcoming surgery and hospital stay is setting in!  I never made it to the "nesting" phase in my pregnancies because Morgan came so early unexpectedly and again went on bed rest with her brother at 26 weeks but I imagine this is similar!  Trying to get everything taken care of at home I possibly can in advance and preparing to spend my weekend meal prepping, errands, etc (in between school parties, hockey and music lesson of course)!
We got up bright and early this morning for her pre-op appointment.  She is healthy and cleared for sedated MRI & Shunt tapping this Thursday morning and for surgery next Wednesday.  Keeping her healthy in this brutal MN winter over the next week now is the challenging part!  Will post an update after Thursday, I am bit curious/worried about her shunts function so this should be interesting but as we discussed with her neurosurgeon they would be unlikely to make any changes with them at this point anyway if she is not symptomatic. 
Next Tuesday afternoon we are scheduled at Gillette's in St Paul where she will have her surgery with OT, Childlife, Extremities fittings, tour etc.  We received a preparation package in the mail with Dyna-Hex CHG solution we will have to bathe her in Tuesday night and Wednesday morning to prevent infection.  Her surgery is scheduled for 1:15pm on Wednesday and should take 3-4 hours (we have to be there at 11:45 am) and unfortunately we could not get the morning slot so will be trying to keep her occupied all morning without food or water- wish us luck on this ;)

SDR is scheduled

On Monday we met with Morgan's neurosurgeon (Dr Petronio) at Children's in St Paul, not exactly what I wanted to spend my extra day of a long weekend doing but happy to get in without missing school & work!  We spoke at length about the pros/cons of Selective Dorsal Rhizotomy (SDR) surgery, the risks, checking her shunts are working, etc. 
He is highly recommending this surgery also.  She is an ideal candidate (fits all of the candidate criteria - age, medical history, level II spastic cerebral palsy, etc) and more importantly he weighed in on the long term effects of spasticity/CP if she did not have the surgery.  If we did not proceed she would experience more muscle stiffness and deterioration over time and especially during adolescence. Her muscles in her leg wouldn't keep up with bone growth which results in muscles that are shorter than they should be and impacts joint range of motion and causes bone deformities (likely resulting in a bone surgery down the road).  It also becomes more painful over time as a result of changes in joint position and deformities and most likely her walking would get worse over time - she would walk more crouched and more up on her toe or feet turned in. 
Dr Petronio has done over five hundred of these surgeries (and goes to Jamaica every year to do them with Dr Gormley who we saw at Gillette's) and probably the most experienced around which is definitely reassuring!  There are different levels of this surgery and he does perform single level laminectomy (vs multi-level) which is a little less invasive and smaller scar. The surgery takes about 3 hours and typical recovery time is 3-5 days with total of 4 to 6 week inpatient stay for rehab. We spoke about checking her shunts flow/pressures per the recommendation of Gillette's neurosurgeon and he has never experienced CSF leakage through incision site but does agree it is best to go into the surgery understanding this. We have known from scans for a couple of years the shunt in her fourth ventricle is not actually placed in the ventricle so not convinced it is functioning properly but will leave it alone unless she starts displaying shunt malfunction symptoms. There are risks of course (as with any surgery) which he reviewed, the most serious, but rare, being paralysis.              
I have also spoken & messaged with a few different families who have undergone SDR and their feedback is very positive, one said "it was the best choice we have ever made".  I have learned a lot from these people regarding the procedure, the recovery and inpatient rehab time and schedules following and it was helpful to learn from their experiences to know what questions to ask!  There are facebook groups also I have joined and it is very encouraging to watch the videos of these kids and see the outcomes.
The short of all of this is that we have decided to move forward and I scheduled the surgery yesterday for Wednesday, March 13th at Gillette's in St Paul. 
Lots to do before this. Just prior to the surgery she needs a full MRI of brain and spinal cord and we decided to do this sedated so that they can tap her shunts (insert needle into her shunt reservoirs to extract CSF and measure pressure) at the same time, we have this scheduled for Thurs, Mar 7th.  She also needs pre-op exam and we have a lot of planning for missed school, work and schedules.  Gillette's has already been very helpful and sending more information as well and will schedule tour and prep appointment the day before.