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.  

Robot Morgan and Selective Dorsal Rhizotomy

Hmmm where to start...its been a long month!

Post Serial Casting is going well, Morgan has gained her strength back in her right leg and seems to be walking better and we do see improvement in her right leg toe walking.

Kindergarten, not going so well :( - it seems to be a new struggle daily and there has been a lot of tears, frustration and "feeling sick".  She is struggling with math, writing and letter/number recognition and even things like the cafeteria noise which bothers her/gives her a headache.  On the bright side, we love her teacher and the students all seem to be very kind.  Hoping we can work through this and make some adjustments so she likes school again!

On Nov 29th we had the first of a series of appointments at Gillette's to look at longer term picture and options for her cerebral palsy.  She had a Gait Analysis done in St Paul which I wasn't quite sure what to expect going into, but was pretty fascinating! They went through extensive PT examination and took videos of her walking.  They applied a bunch of reflective balls/sensors and have cameras which track the movement of the reflectors and records when muscles are active and when they are at rest.  The sensors glow which Morgan thought was really cool and she quickly became "robot Morgan" for the day, see picture.  We watched the recording after and this is essentially the same equipment they use to make animated films and for recording athletes so was kind of neat to see.  They also did plantar pressure testing by having her walk across on a mat which senses the pattern and distribution of pressure.  The last thing they tried to do was Oxygen consumption test which  required her to put on a mask and breath into it. The second Morgan saw that mask she freaked out and we never got this done :( - she is quite scarred and paranoid from past surgeries clearly!

This morning we had another 4 hours of appointments at Gillette's in Burnsville for Spasticity clinic.  She met with another physical therapist first for about an hour again who did thorough assessment of gross motor.  We then had a long appointment with several doctors who had reviewed her case together- Neurosurgeon, Orthopedic and Rehabilitation medicine doctors - we spoke for a long time about her medical history and went through exams.  Morgan spent most of her time entertaining them with the play doctor set and doll they gave her which I think won them over very quickly!  This poor doll had several band-aids, broken eyes and surgeries by the time we left!
All of this information gives them an idea of her baseline now and they weigh options for future treatment - continue doing botox injections & serial casting (which wear off and need to be repeated), looks at drugs that can be helpful for spasticity, or some children are candidates for a surgical procedure called Selective Dorsal Rhizotomy (SDR).   They do feel she is a strong candidate for this procedure and believe she will get great benefit from it. 
Information on this procedure can be found here: https://www.gillettechildrens.org/conditions-care/selective-dorsal-rhizotomy-sdr-surgery/what-is-rhizotomy-or-sdr-surgery, short explanation is that they go into the back of her spinal cord and cut sensory nerve rootlets that are contributing to the abnormal muscle activity.
This was a lot to take in and we discussed the pros/cons and risks of moving forward (and what her future looks like if we don't) with this and the surgery itself at length with Gillette's neurosurgeon. The recovery from this surgery is very intense.  The surgery is 3-4 hours and requires a 4 to 6 week admitted hospital stay and daily therapy post discharge. She would essentially have to re-teach her body how to move again- to roll over, sit up, crawl, walk, etc.  If spasticity isn't treated at all, it can lead to more complications down the road like short muscles and bone deformities. 

The next step if we should decide to move forward is to schedule with Morgan's neurosurgeon (he has surgical rights and does this surgery at Gillette's with the rehab doctor)- she needs to have her shunts assessed and ensure they are working (a couple of ways to do this but typically also invasive from what I understand) as well as full body MRI.  Her shunts drain her cerebral spinal fluid (CSF) so if for some reason the pressure wasn't working optimal on either shunt this could cause issues with CSF leakage through incision after this surgery (versus draining through the shunts).  

Pat and I will sleep and pray on this, do our homework and speak to other families who have undergone SDR and make a decision at some point in the near future.  Looking forward to some time off work and school and to celebrate the holidays with family!

EEG Day 2

Another day trying to keep Morgan occupied and entertained.  They monitored overnight again on Friday and we were discharged Saturday morning around 10 am.  The neurologist went through the last 24 hrs of results again and just a couple of spikes but nothing concerning as was the day before.  He prescribed Diazepam to have handy just in case she ever did experience a seizure and it lasted longer than 3 mins. So grateful for uneventful stay and that we do not have another diagnosis at this point! 

Admitted EEG Day 1

We checked into Children's about 9am yesterday. It took a while to get situated but we are told we have the biggest/best room on the floor with a good view of the garden :).  
She was not a fan of the blower which dries the glue for the electrodes to stick to her head (she freaked out and pulled several off on more than one occasion) so that was a fun couple hours just trying to get set up.  The goal is just to monitor her with regular activity and they have this feeding to the front desk with video monitor on her also.  We spent the rest of the day yesterday just hanging out- tv shows, movies, play doh, arts & crafts etc. At least had a decent night sleep since they are not coming in every couple of hours overnight like past hospital visits!

The Neurologist rounded this morning around 10 am and gave an update that her brain activity is looking fine.  They are not seeing spikes in her parietal lobe, the "abnormal brain activity", that they have seen on the last two EEGs.  So this is good and hopefully means her brain has "calmed down" over the last couple months which I think her behavior and lack of "episodes" shows.  The problem with seizures, however, is you never know when they may hit so he was concerned they will likely crop up again and suggested prescribing an "emergency medicine" to have handy at home just in case.  He described this like an electrical line in a house, the spikes are like the line "sparking" and you never know when or if it could start a fire (seizure).  Meanwhile they would like to keep her one more night/day just to continue to monitor. Will discuss more tomorrow morning after more results. 

She was getting very stir crazy this afternoon and wasn't allowed to leave the room, the monitor is plugged into the wall with a long cord so she could only walk around in the room :(.  Thankfully Breannas Gift org/volunteers (breannasgift.org) came by with a fun mask craft and we were able to get the cord out to the hallway tables so she had fun doing that.  A couple of hours ago they came through with a battery pack so she got about an hour in the kids play room also and doing much better now!
Updated pic from today

Kindergarten & Serial Casting

Three and a half weeks in to Kindergarten and one week with her cast on...thought I would jot down some updates on Morgan!

Kindergarten (all day Spanish Immersion in PL) was a bit of a struggle the first few weeks but getting there!  I have received a phone call or email from the school every day except 2 at this point - various things regarding her orthotics, glasses, long walk & stairs are a problem when going from classroom over to Westwood school next door for gym/art/music (construction in progress), she had a meltdown after getting wet one day, new para wasn't hired, she fell, etc. etc.  Hopefully they are just being overly cautious as they get to know her and I think still ramping up their Special Ed at this school.  The good news is I think Morgan really enjoys it and seems so grown up with her stories after school :) and I love that she gets transportation straight home (when I am not traveling) so I get to be first to hear about her day.

Last Monday, we went into Gillette's for her Serial Casting.  They casted her right leg only and of course she picked a pink cast.  They were able to get her ankle to near 90 degree in the cast.  She will have this one on for two weeks and next Monday we will go back in to remove and put a new one on with even greater flexion for another two weeks. She does still toe walk in her cast somehow but they said this is pretty normal and the next cast will be much harder for her to toe walk in.  We scheduled a follow up with physical therapist and will likely have to have her orthotics redone after the casting also.  Morgan actually doesn't seem to mind it- I thought it wouldn't be so cool after a couple of days but I think she gets a kick out of the attention and everyone commenting on her broken leg!  Baths are a challenge but turns out they make rubber cast covers and sell them on Amazon, I highly recommend!