Cast off, Recovery & New School

Overdue post, a lot going on! Morgan got her cast off on Mon, Nov28th and I think we grossly underestimated the amount of time it would take her to walk again but getting stronger every day!  Of course she was glad to have that stinky thing off, take a normal bath and have a wider selection of pants!

She took her wheelchair to school the first week after her cast removal and was hesitant to walk much (with her orthotic on only), I think still some pain and just weakness.  After the first week though we had her at home over the weekend and used the walker only and now she is using the walker still some but also walking a little without. Still slow and steps are challenging but getting stronger everyday…the MN ice/snow is making this extra tricky!  We had her orthotic adjusted also a week or so after she got it (was rubbing and giving her red spots) so it’s fitting better and got some new Billy’s shoes and Boots since she has to have the orthotic on at all times to walk for now.  We have a follow up apt with her Surgeon in early Jan (4-6 weeks after cast).  

She also wanted to try hockey again (MN Special Hockey) last Sunday so after trying on a few pairs of hand me down skates we found a pair that are wide enough to fit over her orthotic and she skated for a short period of time with the trainer but was super frustrated and I think just tired.  

Morgan also switched schools two weeks ago so that has been a bit of an adjustment!  This situation at her small private school was challenging with her disabilities so this has been an ongoing topic of discussion for a few months and ultimately decided to move back into the public school where she receives SPED services (and received an in district transfer approval to do so).  I could probably write for days on the topic of school and children with disabilities and the constant battle this is for parents but will just say its exhausting!  So far so good, she seems happy and continues to work one evening per week with her tutor also for reading (dislexyia) so we will pray for continued happiness, progression and that we made the right choice!       

We also still celebrate her micro preemie “adjusted” birthday every year with a cupcake on December 8th (her original due date)!  

Update - one week post op

Morgan is doing MUCH better!  I definitely underestimated the amount of pain and bruising she would have (she’s black & blue even above her cast up by her knee)- it hurts her to even pick her up but getting better every day.  We stopped the Oxycodone on Friday night after just one dose and never took the Valium they prescribed because they were just messing with her stomach and I think making her feel worse.  Just alternating ibuprofen & Tylenol have worked much better but haven’t needed much the last couple of days and just trying to keep ice bags over her cast when we can also.  Yesterday she went in to Gillettes to have her cast slits sealed & casted over and she was in pain yesterday afternoon I think because of it being tighter.  She went back to school on Monday and I think it’s been helpful it was Halloween and themed dress up days this week to mix in some fun and keep her mind off of! 

We bought a smaller wheelchair and it’s much better but I do think she’s realizing not been able to walk and sitting in a chair all day is not so fun! 3 1/2 more weeks to go!  Thank goodness for our unseasonably warm weather because this might get tricky transporting her up and down to vehicles and around school with snow/ice! 

Home

Last night was maybe one of the most difficult hospital nights we’ve had :( 

It’s been challenging to manage Morgan’s pain/discomfort- she had a plethora of meds yesterday afternoon/evening and just nothing else they could give her, they finally tried a narcotic via IV I think about 10:30pm after she couldn’t fall asleep and was in tears, which made her feel like she was going to vomit so took a while for that to pass.  I think she maybe had a couple hours of sleep and of course shortly after she finally dozed off a couple of times a nurse would come in for a blood pressure check or her pulse ox would go off from her tossing etc, I finally had to ask (beg) them to remove the monitors and leave her sleep (which they did reluctantly) and rubbed her back until she fell asleep and she got a couple hour stretch. 

She was getting pretty agitated and told us at one point “I think these meds are fake” and to “Call Dr G because he could give her some real ones”…some humor in a challenging situation! 

Anyway the morning was long and a bit of a fiasco with getting prescriptions filled and discharged (we got home around 2:30) plus trying to find a wheelchair in the right size. They brought one a size bigger than she needs and unfortunately the medical equipment rental place doesn’t have the 14” we need so we have a 16” for now and ordered one which hopefully should be here on Sunday. She did have PT come in this morning and showed her how to transfer, gave us a walker (mostly for stabilization and toileting) and had her do the wheelchair.  If we are late everywhere we go for the next month it’s because she won’t let us push her and has to do it herself! I keep telling myself her stubbornness and determination is a good thing!  

I am usually a planner but for those reading this who may go through this surgery at some point a few things I wish I would have asked pre op or purchased in advance you need for home- over the counter ibuprofen & Tylenol and a pill cutter, cast cover and a bath chair, ask for a walker, ensure they have a wheelchair in correct size or order before, and several pairs of wide leg sweat pants to fit over cast. 

Of course bring sharpies for cast signing! One of the few things that brightened her day. 

She was still in quite a bit of pain this afternoon and evening, they did leave her cast slit up the sides because of swelling and we will go in next week to have it closed/wrapped. Bags of ice over her cast seem to help but I think it’s the Oxycodone now making her stomach upset also so will try to wean her off that tonight/tomorrow. Grandma came over to tonight (to allow us to step out and watch Max’s first hockey scrimmage) but she was definitely in pain, tummy ache, and think slept for a little bit at least.   We have her in our bed, foot elevated and ice over and she finally ate some bread and watching a movie now, hopefully a better night at home

Post Op

Surgery went great. Her surgeon said they did not have to do the muscle lengthening which is a good thing. This is something they assess during surgery after they rotate the bone depending how the muscle looks and if more length needed but they try not to do it because it weakens the muscle and recovery/getting strength back takes longer.  Hoping with  casting over the next month flexing her foot it will keep it stretched and help prevent further toe walking. 

She has a plate/pins in and casted for about a month. They left slits on the sides of her cast to allow for swelling and depending on how it looks in the morning they will close/ wrap it either here before discharge or come back in a few days.  

She was quite entertaining coming out of anesthesia and the first thing she said to us was “I need to get some pants on and get up to my room, I have visitors coming”. We are just relaxing now, she ate some food and trying to manager her pain.

Surgery

Everything ran smoothly this morning! 

Morgan’s largest concerns were if she got to pick her cast color and she interrupted our discussion of the procedure(s) with her surgeon with a very important question of “what color sharpies work best on pink?”.  We also made sure she got to pick the flavor of smuckers that goes on her mask (went with vanilla, no fruit) and even found a small mask for boogers (her blanky that’s been through many surgeries with her). 

I was able to bring her back to the surgical room and hold her hand while she went to sleep. This is always the scariest/hardest part and there were some tears but she clenched onto bunny and boogers in one hand and mine in the other! 

They called with an update a few minutes ago and said they started about 5 minutes ago and she’s doing great.

Tibial Derotational Osteotomy - Round 2

Lets try this again...

Morgan is scheduled to check in at Gillette's at 8:45 am tomorrow morning with surgery at 10:15 am. 

Pre Op exam and labs completed last Monday and she was a rockstar with the blood draws, no tears!  No COVID test required since we are within the 90 day window of her last positive PCR test.  We did her first surgical bath this evening and have to do another one in the morning.

In hindsight, the month and a half delay was probably a good thing.  A bit of a pain to rearrange & redo everything but it allowed her to enjoy a full season of cheer this fall, walk in her aunt's wedding, and enjoy a fun MEA break with friends at a waterpark hotel in Okoboji.  Her expression at the waterpark says it all!  

We appreciate your thoughts and prayers for Morgan and the skilled hands of her surgical team tomorrow!

PCR results & cancelled surgery

UGH. Morgan's COVID PCR test from Saturday morning came back positive and we had to cancel the surgery this morning :(

She doesn't have symptoms at all and I have done two at home tests on her (one before the PCR test out of curiousity and one this morning after it came back) and both were negative.  I spoke to the nurse this morning and apparently the tests are highly sensitive and would detect if she had within the last 90 days so she must have had recently.

She was quite upset when we broke the news and "tell them I'm not sick", she is on a bit of an emotional rollercoaster after all of the prep and mentally preparing I think.  Will update when rescheduled.

10!, 4th Grade, Tying Shoes & Surgery Prep

Confession...I've had a hospital bag packed in my closet and ready to go at any moments notice for several years.  A small bag with an overnight change of clothes for Morgan and I, toiletries, some small toys etc.  I'm not typically the superstitious type but probably a Hydrocephalus mom lessons learned, type A, thing after we ended up in the ER unprepared one too many times and now I'm just afraid to unpack it! I discovered this was actually a common mom practice after a fellow hydro moms brought it up this summer over lunch at the hydrocephalus conference and felt much better about myself!  Anyway, I pulled this bag out of my closet yesterday and happily removed the toddler sized clothing after several years collecting dust to update for Morgan's surgery tomorrow.

We've had a bit of a fiasco scheduling labs, Pre Op , etc and timing it all to prepare for sugery.  Note to self, do not schedule surgeries the day after a holiday weekend. 

Tonight we gave Morgan her evening surgical prep bath, removed nail polish, jewelry, answered a lot of questions, and all ready to go for bright and early tomorrow morning.  Please keep Morgan, us and her surgeon in your prayers for all to go well and a successful surgery!

Morgan turned 10 on August 21st and had a fun movie night and sleepover themed birthday party with her amazing friends.  She started 4th grade this week, is looking forward to her auntie's upcoming wedding with her flower girl duty, and her OT shared a "YouTube" video from last spring of her finally tying her shoes!  I wasn't sure she would ever be able to accomplish this feat with her fine motor delays but yet another amazing accomplishment!  

     

Summer & Tibial derotation osteotomy

I am not quite sure where the last year went but hard to believe it is August already and the last time I posted was about a year ago!  Morgan's hydrocephalus and her gross motor abilties have been stable and we continue to do weekly PT but our focus has been more on her education and behavior.  She wrapped up 3rd grade and received reading, math, OT and adaptive PE services through the school district all year and still loving the small private school and the amazing teacher and friends she has there!  This summer she has a reading tutor who is Orton-Gillingham trained for dyslexia and works on her math workbook (her least favorite subject) several times a week with her nanny who is a teacher.  Sadly we have been on a waiting list for a child psychologist for nearly 2 years and seems impossible to get in person services anywhere local but we are still addressing her anxiety with medication (escitalopram) and have increased dosage as needed. She still really struggles to control her frustration and emotions at times so continue to try to address!

Unfortunately we also learned several months ago that her neurosurgeon (who we love and she has been with for several years) was leaving Children's hospital in Mpls/St Paul and we have been forced to shop around for a new pediatric neurosurgeon :(.  She has an appointment coming up with a new Dr at M Health Fairview in a couple of weeks. 

She has had a few appointments at Gillette's over the last year- watching her CP, growth, and her right leg external tibial torsion.  She had another gait & motion analysis done a few months ago (robot Morgan) and a couple of appointments with her orthopedic surgeon.  After watching for a while and much discusion we did decide last week to move forward with scheduling surgery to correct her right tibial deformation.  The surgery is scheduled for September 6th, it is called Tibial Derotation Osteotomy.  Timing is not ideal for many reasons - school, sports, weddings etc this fall but due to insurance changes we need to have it done before October and it is better for her functionality & mobility to have it done before next year & winter.  From what I understand typically this surgery just requires an overnight hospital stay and she will be casted and in a wheelchair for ~ 1 month, then a walking cast/brace and PT for several weeks until fully recovered.  She will likely always have to wear a right orthotic but it will give her more functionality with her foot straight, help prevent potential knee & hip issues down the road, and hopefully to allow her to skate better for hockey and give her ability to try new things!  The surgeon also said he may look to do some muscular lengthening in her calf muscle, this will be determined when she is in surgery. I will post updates during this time. 

Meanwhile, we will continue to enjoy our last month of summer!  So far this summer she has done swimming lessons for a couple of months, lots of lake time with friends, Adaptive water skiing again with Shockwaves, family camping weekend, she starts cheer this week, and we had a great trip to Austin TX for the Hydrocephalus conference again a couple of weeks ago!