Nutcracker!

nutcracker

We were so lucky to get to see The Nutcracker this year. We were even luckier to get to see it with our good friends who happen to snag us all a backstage tour beforehand! The girls loved see all the sets, costumes and we even got to meet Karen Kain!!! It was a great day and was a lovely pre-Christmas treat to get us in the holiday spirit!

Spinal Surgery Part 2

Stella was admitted on the afternoon of September 15th. Her surgery was scheduled for the next  morning. She was most anxious about her IV but overall in good spirits. Only complaint has been the lack of miso soup in the cafeteria #nevergiveup

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The morning of, I spent most of my time with my face buried in her neck to feel her soft skin against mine and smell her sweet scent. Trying not to let her see my tears. We scratched her feet like she likes and played with her hair. They took her in at 11:30. The surgery takes 6.5hrs. 

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Out of surgery and doing very well. Stella did give us a bit of a scare with a barf the next morning. It’s always a panic as she has such poor head control and we worry about her aspirating. We think it was just a reaction to the morphine as this happened last time. At noon on day two the team assembled and we extubated her to her bipap. I was a nervous wreck, worried about her plugging again, but it went very smoothly. It is such a relief to be able to communicate again, and hear her voice. She was¬†still complaining about her back and wanting her legs stretched but we worked¬†to keep her comfortable.

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We did had to give two Tylenol and morphine boluses on top of her continuous morphine dose to keep her comfortable. But her sats were great and we got to take out the catheter and start her tube feeds up (slowly).

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She had an okay second night. Lots of air in her tummy so we kept her vented. We were still waiting for a pee…and working on taking¬†some bipap breaks and working on getting her on home feed schedule! All steps to getting her home! ūüôā

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Day three. A good day with steps in the right direction. Finally got a pee! We spent most of the day off her bipap. Continuous feeds are up to daily mL which is great! Still chasing the pain with extra Tylenol and morphine. Had some yummy miso soup for lunch by request.

Day four. And we were out/up! Out of ICU and up to the ortho ward! Great news for all (parent bed YAY)!!! Slowly increasing feeds waiting for bowels to start working again! ūüėČ

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Day five. Busy day. Dressing change. Quick try sitting up in our (way too small!!!) chair. Chair adjustment appointment requested. Visit from our respiratory team. Watching Harry Potter and eating some fibre-rific popcorn. Still waiting for bowels. 

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Day seven.¬†Hands up if we’re slowly going crazy¬†?¬†it’s seems like everything was going a little sideways today. X-ray was ordered wrong (sitting) then ordered wrong again (standing!?!) doctor who ordered it went MIA for several hours. They couldn’t¬†find any of the gtube extensions that we use (and purchase from them!?!) and then¬†they tried to half her morphine meds randomly. Cue crazy lady mom!

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four hours later…

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later we decided to go on an adventure… We find keeping Stella distracted REALLY helps, so we tried sitting up in our chair so more!

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And e found the roof garden! #secretgarden  #nevergiveup

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We’d never been up and had lots of fun…for about 5 minutes and then needed a rest! ūüôā

14425378_10154305443850813_8046336445405596291_oDay 8. Home! No nursing all weekend¬†so mom and dad were still be VERY¬†busy and VERY tired but so glad to have some sense of normalcy back. Stella still has lots of recuperating to do and Myles and I have lots to sort out including new lifting techniques, all her chairs need to be refitted, and getting use to this 2lb heavier, 3″ longer Stella Bella!¬†Thanks to everyone for keeping us in their thoughts and the lovely presents, treats, and visits to keep our spirits up!¬†#iamtitanium¬†#nevergiveup

Rebecca Run 2016!

#teamstella¬†biggest team of the 2016¬†#rebeccarun¬†so proud and grateful! Unfortunately our team captain is cheering us on from home resting up and fighting a cold! ūüôĀ13640747_10154088732105813_2918158569535709587_o

An extra round of applause to these three who all won in their timed categories of the 5km!!! Way to represent Xavier, Melissa & Mike!!

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Go #teamstella we are so thankful for such supportive and amazing friends and family! Thank you for helping us fight SMA!

Spinal Surgery Part One

I’ve been meaning to write down our experience with Stella’s spinal surgery. One so I remember, as it is already quickly becoming a sleep-deprived blur, but also for others, as I know how valuable others’ personal experience is to us.

Stella had the first (plates installed at top c1-3 and bottom of spine L1-3) of her surgeries on May 18th with Dr. Zeller at Sick Kids. The thought is that these plates will be given time to bond with the bone so that when the rods are placed in the fall, and the massive amount of tension put on them to straighten her severe c-curve they will not fail.

It has been very hard, but we are happy with how things are going. We were also terrified, especially of how to explain it to her as she has severe anxiety.

For us its¬†been difficult as it feels like a very big decision. What we’ve tried to remind ourselves is that its not really a¬†decision. Stella‚Äôs scoliosis is so bad that it is now negatively impacting her bowels and respiratory system as it is so compressed and distorted. She¬†had to have the surgery. And¬†although scary, at least we¬†are seen by the best doctors at the best¬†hospitals in the country. We do know some older teens who have had similar surgeries so we did get together with them beforehand to talk to Stella a little about it. For us, we avoided all talk of incisions, cuts, or plates or rods. We just kept and keep saying “surgery” and “fix your back” with very little details to not overwhelm her. Because she can’t see the wound this helps.

Another heartbreaking realization is that any spinal surgery will void Stella from any of the current medical trials for SMA as they are all administered via a spinal injection. The children we have seen doing so well on the various treatments give us great hope for the future, but we aren’t sure if that will ever include Stella. As a parent this is devastating. To know that there will be a treatment hopefully/probably in our lifetime, but it may be too late to make any great impact on Stella’s condition. The most we’ve ever hoped for is to pause the degenerative effects of SMA and maybe hopefully improve her respiratory function.

We had pre-arranged with Anesthesiology to have Stella pre-admitted the night before to start IV and TPN/lipids. This is so she does not fast, as SMA patients have no fat reserves and her body can quickly move to metabolize the small amount of muscle she does have. Stella is also now very afraid of needles and IVs so this gave us some extra time to spend with Child Life services to help her through that as much as we could.

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She went in for 10 am the next day. The surgery was 7.5 hours which was agonizing to wait through. They had to finish up quickly (and close her with staples)¬†as they were having some trouble with her airway (due to her being on her stomach, which she never is). She went immediately to the PICU (pediatric intensive care unit) with a breathing tube, catheter, 4 IVs and on morphine and Tylenol. During the surgery they had her in traction and halo so there were also small wounds on her head and legs in addition to the two very large bandages on her back. The Morphine made her very sleepy at first which was good as she hated the breathing tube when she was conscious. We did have trouble with her secretions those first few days and had to use the cough assist machine and suction quite a bit. This was probably from being on her stomach during the surgery and having mucus build up (which is why we have the cough assist machine as she can‚Äôt always clear them herself). She did have a couple of really bad plugs, and as a result, very bad scares. I‚Äôve never seen her oxygen so low (9% when she should be above 95%), and ended up working with the team twice to save her. This is not something I would ever have imagined being able to do before having Stella. And I wouldn‚Äôt say we are ‚Äúused to it‚ÄĚ but we both do go into survival mode and act quickly and intuitively as we know her so well.

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After two days, and weaning back on the morphine they removed the breathing tube and she went directly to her bipap (which she is on normally at night or when ill). We found her quite loopy (and funny!) on the morphine when she was awake. She had a low grade fever for a few days that we treated with Tylenol. After a few days they removed her catheter which had cause a UTI (but she was on post-op antibiotics anyways and cleared right up). They also removed all but one IV. We began her back on her Gtube feeds slowly.

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We were then moved up to the ortho floor in the constant observation room (multiple beds in one room with several nurses) They changed her dressing which was very painful the first time. Subsequent dressing where not been as bad. We began trying her up in her chair. I was very anxious as I thought it would be horrific. She did very well though and enjoyed getting up and about. We increased the time she spent up. The morphine unfortunately constipated her very badly and we did have some very messy days afterwards while we used a laxative to relieve her. The most painful part was when we had to change the dressing for the first time. The tape was very sticky and pulled at the small hairs, skin and incision. She was in agony and it was awful to have to hold her down and subject her to the pain. I always worry she will feel betrayed by us. I feel its our duty to protect her when we can, but in instances like this it has to be done. I am always so grateful for a (very gentle) hug and kiss when its over.

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She spent two nights in constant observation as she still had a low grade fever and was still working up her full feeds. Over the five days we were in ICU and two in constant observation, Myles and I did 12 hour shifts with her so she wouldn’t be without one of us. We also went home to oversee the renovations, and spend a little time with Oliver, who was in the excellent hands of a myriad of friends who graciously stepped up to help. We are also so grateful for the friends and family that kept us so well fed! The care packages we amazing and so appreciated!!!

We then 3 days in her own room on the ward – with a parent bed!!! Unfortunately I had to go back to work on the Tuesday and Myles then did 72 hours straight. We were able to bring Oliver to the hospital to visit his sister for the first time. We normally don‚Äôt risk him picking up germs as we‚Äôre typically on the respiratory floor, but since post-op is ‚Äúclean‚ÄĚ and she was recovering so well we thought it would be nice for both of them. It was wonderful to see her acting more like herself again!

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She was discharged 9 days after her surgery. We continued to give her Tylenol every four hours for the pain and removed her dressing completely as airing it out will speed up the healing. She was sitting up her in activity and power wheelchair for about 2 hours a day. They both need to be re-adjusted to accommodate her new posture and a small increase in height. The rest of the time she preferred to lay on the couch propped up on pillows. It was most difficult to keep her occupied as she missed school and her friends immensely and were lucky to Skype in a few times to school. We were all a little nervous for her first shower (just with water) as she was very anxious about it hurting. We just have one of us hold her, while the other washes her hair and gives her a bit of a sponge bath on her body. We are SO looking forward to having her accessible shower completed to make all of this easier and safer!
She went back to school for a few hours last week Thursday and Friday. She also got the first 1/2 of her staples removed which I thought would be very unpleasant. Myles took her, and said that she did very well. It was the first time she had known they were there as we were previously careful not to scare her. She had the rest removed this past Tuesday and was excited to tally her count ‚Äď 51!! Her doctor says she looks so good that they cancelled her post-op visit that was scheduled for the end of June!¬† She also started back at school full time this week and is doing remarkably well with her diligent team of EA‚Äôs and nurse.

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Her second surgery (rods) will be in the fall (which will be crazy with back-to-school and back to work). We are obviously still very nervous for her, but she has done so well this time that we are hopeful she will do great again! Thank you for all the kind words, flowers, balloons, care packages and amazing food! We are so thankful and humbled by your love and support of our family. xo