Day 19 - SDR

Morgan slept well last night and got what we hope is her last dose of Gabapentin this morning.  We did an hour in the stander, grabbed breakfast and then left the hospital around 9:30 am and was so nice to spend the day at HOME! We brought the wheel chair home to transport her but we were told not to have her sitting for long periods other than her booster seat in the car.  We put a couple of yoga mats down and made a little play area for her to lay on her stomach, crawl and sit up on to play with all of her toys she is missing :).  We headed back up to the hospital after dinner and she didn't seem to mind until we walked into her hospital room and then she burst in tears that she had to be back here, felt so bad!  She is OK now after a fun bath and movie night.

Day 18 - SDR

I didn't update yesterday either because not too much to add.  She slept better last night and had a couple of therapy sessions this morning.  Kept busy today with Child Life activity and the rehab unit play room, switching time between prone cart, wheel chair and stander (which she is very comfortable in and can maneuver pretty well now).  We also found out we can get a "day pass" for tomorrow to leave the hospital during the day now that she can sit up long enough to be in her booster seat in the car!  Looking forward to some time at home tomorrow with her :)

Day 16 - SDR

Not too much to update on today. I spoke with her PT and she is doing well, working on crawling and sitting up both sides.  Right now her discharge date is set at April 19th.  We received her left orthotic (AFO) today (pink with a unicorn on it) which she will have temporarily and will get her right foot after cast is removed next Wednesday.  We were able to spend more time on the stander this evening and she isn't complaining about back pain.  We have a little evening walk tradition to the skyway to get some sunlight and enjoy chocolate ice cream cups :)

Day 15 - SDR

Good night again last night and lots going on today!  She got her cast off late this morning (this is traumatic with the saw they use to cut it off) and Rehab doctor assessed and thinks another week wouldn't hurt.  She was able to get her foot back to neutral/90 degrees but hoping to get a little bit more of a stretch.  We let her foot air out for a couple of hours because she had a sensitive spot they put a bit more padding around with the new (pink again) cast.
The other new thing Morgan did at PT today was the RobALT, robotic assisted locomotor training!  She was a bit scared of it at first and it took a while to get it all fitted but then quickly found it amusing flying like "Robot Tinkerbell".  She did this "walking" only for a couple of minutes today and she did say her legs were hurting but assume they just ramp up on time each session.   Unfortunately we will need to wait to do this again until next Wednesday when her cast is off again but will continue working on standing and spending time in her stander in the meantime.
From what I hear she is rockstar and moving along quickly!  Her usual nurse was back today and surprised to see the stander, commented most have at least another week before they introduce this :)

 

Day 14 - SDR

They brought Morgan's Gabapentin down to 2 times per day so she didn't receive in the evening last night (no Tylenol either) and she slept pretty good!  Will continue to wean this down.

She had a full day again today with OT/PT, etc and a bit of a meltdown going to the School session.  Her mean mom gave her teacher all of her math homework (which she struggles with) and clearly not as fun anymore! 

The highlight of today (besides receiving more amazing gifts in the mail) is she now has a stander! She needs to spend 1 hour, 3 times per day on this in addition to the wheelchair and prone cart going forward.  The nurse had to show us how to get her into this (careful not to pull her up by the shoulders or twist her back) and she actually took a couple of steps by herself to walk into without prompting.  Her and her brother have quite an entourage of Child Life volunteer friends who they spent the evening decorating crowns and eating treats with so when we took her back with the stander they helped her decorate the wheels with stick on jewels :) 

She stands up well in it and just getting the hang of wheeling it with her arms (her right side is a bit slower as expected since this is her CP side).

Day 13 - SDR

Advice to girls pre-SDR surgery, cut your hair short ;)
The struggle to brush out her hair right now is still a problem since she has minimal time sitting up the back is a matted mess every day and this usually starts our morning off with tears!  She may have dreadlocks when we leave here...
It probably didn't help she had a bit of a rough night last night- we decided not to give her Tylenol before bed to see how she did and ended up calling a nurse in after midnight to give to her.  She was extremely restless, whining and crying in her sleep something hurt.  We got her to wake up and take it and was much better the rest of the night.
She had a long day of therapy  - psychology, 2 PT & OT sessions, 2 School sessions and therapeutic recreation.  I didn't see first hand but am told she did get in the stander today at PT so looking forward to seeing this! Somehow with all of this we got her time in on the wheelchair and prone cart also.
We are going to try weaning the Gabapentin down (she is getting 3 times per day right now) and will see how she does with this, hopefully all goes well and she doesn't start complaining of tingling or pain in her feet/legs.  Also trying tonight without Tylenol again so we'll see how it goes!

Day 12 - SDR

Uneventful day.  No therapy on Sundays and the hospital is pretty quiet and boring.  We got her 3, 1/2 hour wheelchair and 3, 1 hour prone cart rides in although she would much rather sit up on the wheel chair than go on the prone cart - bribery with phone time worked.  We had visitors most of the afternoon/evening and lunch down in the cafeteria to get out of the room.  She also pointed to the couch in the room and said "I have never sat there" so was pretty excited to sit up at the couch and do a craft.

Day 11 - SDR

Morgan had OT & PT sessions this morning and continues to work hard!  She is sitting up better in the wheel chair/more comfortable and she is working on wheeling it herself (see movie and ignore her goofy brother crawling behind her :)).  We did step outside with her for a few minutes today to get some fresh air and sunlight, bummer the outdoor park area at the hospital isn't open yet.  She also joined the afternoon Child Life activity - decorated a pot and planted some seeds for a grassy plant and they painted.  On our evening prone cart stroll she told me "I don't want to go home, its fun here"...haha, we'll see how much longer that lasts!

Day 10 - SDR

Mostly uneventful day today.  Morgan had a couple OT & PT sessions and therapeutic rehab.  They continue to work with her on core and trunk strength (rolling over, playing games on her tummy and side) and trying to push herself to sit up.  We got a few walks around the hospital in her wheel chair and prone cart.  I think she is glad to be sitting up (assisted) and we did some writing and craft in the room but also making her back a little sore!

Day 9 - SDR

Morgan spent last night and today with Grandma today who tagged along to some of her PT & therapy sessions- all is going well (some fun with music therapy & PT together) and her PT told me this evening she is doing great and getting stronger every day- rolling over & trying to sit up & build her core muscles! As most of you know she never crawled (butt scoot only) as a baby and hated laying on her tummy so her core muscles have always been weak!  She got her wheelchair today and did great sitting up in that- we have to chart her time on these and the goal is to get in 60 mins of prone cart time 3 times a day and 15 mins of wheel chair time 3 times a day (eventually adding a stander and trike to this).  The environmental services lady who cleans her room likes to leave her stuffed animals and dolls in fun/funny places around the room which Morgan gets a kick out of, amazing the little things hospital staff does to entertain kids! Tonight her brother pushed her around in her wheel chair for 15 min and then we switched over to the prone cart to watch the dog show in the lobby.   Tonight was also bath night again, the nurse made her a small bath tub for her doll to take a bath with her and thankful I happened to keep the blue waterproof cast cover from her last serial casting :)

Day 8 - SDR

Today's therapy sessions were pretty light - just 1/2 hr of school, and 2 OT & 2 PT sessions.  She had a pretty good day and we got the head of the bed up to 45 degrees, nearly sitting up without any complaints of pain.  They put her cast on her foot this afternoon - will remove it in a week to see if that is long enough.  We did have a pretty rough evening meltdown (understatement) - not sure if she is just tired of the hospital or just frustrated she couldn't sit up to play BINGO :(
Tonight she was excited for Grandma to sleepover with her!

Day 7 - SDR

Morgan slept much better last night with some Tylenol before bed! Another day of several therapy sessions and a session for school.  I didn't attend these but she seems to enjoy going and from what I am told she had a tea party in OT and colored at school :) - hopefully they covered more that she is not telling me!

I spoke with her rehab doctor today and I believe they will serial cast her right foot again tomorrow (we tried this for 4 weeks several months ago which is in prior posts), this time for only a week then take off and check if 1 more week needed.  This will help stretch her muscles which are still very tight/short due to several years of spasticity! She was also molded for new orthotics this evening and excited for the new pink unicorn print she picked out. We had some more visitor fun this evening and more amazing gifts - this girl is well loved and spoiled! We got another hour on the prone cart which her little cousin thought was so fun to push her around on and we joined child life for a cute wash cloth bunny project and ice cream cake! Raising the head of the bed above 30 degrees still hurts but trying to push her a bit to get up to get to 45 degrees tomorrow is the goal.  She ended the evening with a bath and have a cool contraption for this - they put her on this blue flat plastic stretcher like thing and lower into a huge bath to wash her - took a picture of her after all wrapped in heated towels. This is also what the incision looks like on her back - it is several inches long covered with steri strips (no stitches to remove). 

Day 6 - SDR

I am not quite sure if Morgan slept more than a few hours last night :(

She kept waking up whimpering, asking to be moved and for things and seemed very uncomfortable.  I finally got her to agree to more medicine at about 4am and the nurse gave her Tylenol and Valium (I didn't realize until after) and then she slept soundly until a little after 7am when a doctor came in.  I think she must have been really sore from sitting up most of the day, moving around and a few hours on the prone cart on Sunday and she hadn't taken anything for pain all day.  She was a little cranky and had a rough morning (toileting, dressing and hair situation is not fun at the moment) but got better after she got out of the room! 

Today was her first day of therapy and it went well- mostly meeting everyone and talking about goals and interests.  PT & OT worked on her rolling over by herself- from the prone cart to the raised mat, stretched her legs and feet quite a bit and just keeping her up on her forearms playing on her stomach to strengthen her core.  For the first time could really see the results of the surgery and the reduced tone/spasticity in her right leg/foot- she can now easily flex it to neutral/90 degrees which she was never able to do before!  The Physical therapist did mention potentially serial casting her right leg again for a week or so to stretch the muscles even further which we didn't have much luck with before SDR but would have more lasting impact now (and easy time to do it while she is here and not walking etc yet). Dr Sinner (her rehab Dr) is the person rounding this week so chatted with her about this afternoon also and she is going to discuss and revert back tomorrow. I think her favorite was music therapy - he was really fun and had creative ways to get her reaching to play instruments and she seemed to love it :)

When we got back to the room about 3pm and she said "whew, I am exhausted"..

I let her rest for a bit before dinner then we got another 45 mins in walking around the hospital on the prone cart tonight and Child Life had "green & gold" sugar cookie decorating in the lobby area so her and her brother had fun doing with that!  

Here is the schedule tomorrow (I think these build up and get a little longer after a few more days) and a pic of her and Max ending the night playing with new gifted toys!

Day 5 - SDR

Busy day today!  Dad finished building the Lego Hospital for Morgan this morning which is a big hit!  She took a bath this morning- lifted her onto a stretcher like platform and brought her into a room with a big bath with hand shower.  Apparently this was a little traumatic at first but then at the end she was like "ahh this feels good", I bet after 4 days!  She increased time on the prone cart today- we went on it three times about 45 mins each - walked around the hospital and spent some time in the rehab unit playroom on it.  They also started raising the head of her bed slowly all day- started at 10 degrees, then 20, then 30 (which hurt a little bit), then later in the afternoon removed her knee immobilizers so she could bend her legs and had her head up past 30/almost 40 degrees and she did great!  She is so happy to be able to play with things on the table now with her head elevated.  Will continue to increase this to get her sitting up!
We had visitors all afternoon and evening which was great entertainment and she was so excited to have her Kindergarten teacher who came with bags full of cards and gifts from her class!  She has the nicest friends in her class & the whole school sending so much love and we are so grateful for this! We wallpapered her room wall with cards and she is sleeping with all of her stuffed animals tonight :)
I received her schedule for tomorrow this evening- she starts at 9am tomorrow with different therapy & evaluation sessions all day until 2:30- Psychology, OT, PT, break for lunch, Therapeutic Recreation, Music therapy and PT again.  I will join these tomorrow for her first day and each evening she will get a new schedule for the following day (I believe will start to get longer and mostly consistent).

Day 4 - SDR

We had a little bit of a rough morning, again the diaper situation and I think she is very uncomfortable with it (can't blame the girl!) and for a little while we were concerned if she maybe has an infection from the catheter but by the end of the day thinking she is OK.  The highlight of the day was getting up on the prone cart though and finally getting out of the room, and of course more visitors & gifts!  We might need a U Haul when we leave this place!  We got her dressed this morning and brushed her hair (the back of it was crazy matted from laying on it so long so that took about a half hour!) and got her cleaned up which was a bit traumatic.
Physical Therapy (PT) came in about 11 am to show us how to get her onto the prone cart.  We have to have one person roll her into another persons arms on her tummy then transport over to the cart to lay on her stomach.  She can lift her head up a bit if she is on her elbows this way and it strengthens her back and core.  We took a walk around the hospital and skyway, her (4 yo) brother insists on pushing her which is slightly scary but he got the hang of it going slow and watching out for bumps in the floor without running her into anything!  Day 1 of prone cart they wanted her on it for 20 mins per time, 3 times a day and will gradually increase this.  The second time we went out, Child life had some play doh activities going on in the main area of the hospital so she got to do that for a while with her brother which was fun!  So grateful for these volunteers who come in to entertain kids!
I finally got out of the hospital myself for the first time since Wednesday and in true Minnesotan fashion admittedly had my sunroof open (its 32 degrees outside) just to get some fresh air and sunlight in the car :).  Dad is spending the night with Morgan in the hospital tonight with tall orders to put a million piece Lego Hospital set together and have movie night!

Day 3 - SDR

They said this would be the hardest day - 2nd day post op...we did have a bit of a rough morning but really only because she is getting bored and a bit stir crazy/tired of laying flat!  Several hours of trying to occupy her with Mary Poppins, crafts, play doh, cartoons, we made this butterfly craft, etc - thankful for Child Life at Gillette who came in with some activities!
She was able to have both IVs removed and her Catheter (cord free now!), she is diapered which is a bit of a problem but managing.  Still laying flat and just roll her on her sides to reposition every few hours.  She is just taking Tylenol and Ibuprofen now orally to manage pain all day and hasn't needed much!  She hasn't complained about her legs and says her back hurts only when we move her.
Thankfully we had visitors starting around lunch for pretty much the rest of the day to occupy her with conversation & new fun toys.  She had a little break and took a short nap in the afternoon which was perfect.  Tomorrow I believe we are able to get her on the prone cart and at least get her out of the room and did receive her schedule for her first Physical Therapy session at 11am.

I have two recommendations for anyone getting SDR - invest in an Amazon stick for the TV to watch movies, Netflix etc which has been great here and lots of new small toys/activities and space out giving to them :)

Day 2 - SDR

Morgan slept pretty well overnight last night, just woke up a couple of times whimpering with a little pain which medication helped with.  They did have to come in about every hour and check vitals and open her knee immobilizers to make sure they weren't rubbing & breaking her skin down so wasn't the most restful night!  
This morning she woke up and we finally got her to drink a little bit of water and ate a little breakfast.  She needed a couple of extra bumps to manage the pain and took a couple of short naps but mostly did great the rest of the day!  Grandparents occupying her with new toys helped and a visit from her brother this evening as well as Child Life crafts we brought to the room.  She is laying flat on her back and they do rotate her a little on her side but cannot sit up at all so we are feeding her, etc.  They stopped her continuous pain medicine drips and moved to oral which she is doing great with.  It is common during SDR recovery to experience tingling in feet/legs for a couple of days and they explained this sensation like after you hit your funny bone.  They are treating this with Gabapentin now and must be working because she is no longer complaining about the knee immobilizers being too tight or her feet hurting.   She is snuggled in her bed now watching E.T. (she has an "ET finger" with the pulse oximeter on it so this prompted :)) and just about to doze off!

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 ;)