Ainsley's Scoliosis Surgery

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Ainsley wasn't exactly thrilled about having to be up super early for her post op appointment but she has been fully cle...
25/04/2024

Ainsley wasn't exactly thrilled about having to be up super early for her post op appointment but she has been fully cleared! Just has to go slow, but beyond that no other restrictions! On top of that, xrays show everything is holding great and she only has one minor curve at 10°, compared to her double curves prior to surgery that were 47° and 52°!!

Today is the 2 month mark for Ainsley's tethering surgery. I never shared those surgery scars because, honestly, they we...
21/04/2024

Today is the 2 month mark for Ainsley's tethering surgery. I never shared those surgery scars because, honestly, they were pretty rough for a while. She had several entry points -- 1 for the chest tube, 2 for laproscopic entry to place the hardware, I have forgotten what the other smaller spot was for, then the larger incision where they finished up the tether.
I love that she has embraced every single one of her scars and and wears them with pride. 💚

Ainsley's fusion was 2 months ago today and she had her first full day back in school today! She is definitely tired and...
15/04/2024

Ainsley's fusion was 2 months ago today and she had her first full day back in school today! She is definitely tired and sore but such a trooper! She's had a couple bumps in the road healing but she is making great progress. We head back out to Philly next week for her follow up and (hopefully) she is fully cleared for more physical activity!

25/02/2024

Ainsley has been discharged, we are heading home!!! Praying we can keep her pain controlled on the long car ride, but we are both so ready to be back!

23/02/2024

Post op day 3 (take 2). We both slept a little more last night, her chest tube was removed, got xrays to make sure her lung was re-inflating, so far walked 13 laps with only 2 more to go before bedtime. Still dealing with some discomfort and pain from the surgeries, but that is to be expected. Overall she is doing really well, but honestly the worst part right now is the homesickness. We are both really ready to be home so that has been the motivation to keep her moving.

22/02/2024

Post op day 2 version 2. Ainsley was a champ and walked 2 laps in one attempt, changed into regular clothes, started drinking fluids and has nibbled on some crackers! She is struggling with her respiratory exercised and having significant pain breathing thanks to her annoying chest tube, but hopefully she can ditch that tomorrow and it will help her feel much better. Prayers for an easy and restful night tonight so she can tackle her goals tomorrow.

Ok... so here's the big reveal... I had to wait for Ainsley to wake up so I could show her first and get her permission ...
22/02/2024

Ok... so here's the big reveal... I had to wait for Ainsley to wake up so I could show her first and get her permission to share, but you guys... look at this before and after! Also, they only had to tether down to L3, not L4 like Dr. Samdani originally planned. Not a huge difference, but one less screw. I can't wait to measure her and see how tall she is now! 💚💚💚

22/02/2024

Ainsley had a good night! Her arterial line blew, but her BP hasn't been concerning so they opted to pull it vs replace it and will just stick her for blood draws and manually check her BP as needed. She is already off of her supplemental O2 also! This is all much faster than last time so things are looking good!

21/02/2024

Ainsley did great in surgery and is back in PICU for at least a night or two. Based on her last response to coming out of anesthesia, the doctors are choosing to go ahead and keep her sedated overnight before trying to wake her up. This will keep her the most comfortable to avoid another dangerous situation and I appreciate that that are looking out for her best interest rather than try to just rush her along with "normal" protocols. Prayers for a very quiet night and an easy wake up for her tomorrow.
Side note: I cannot praise the staff here enough. Everyone is genuinely interested in her progress, from previous nurses to even the cafeteria staff. The care everyone has here for the patients (and parents) feels more Midwest nice than unfriendly New England that I expected.

21/02/2024

Dr. Samdani just came in to let me know he is done, the surgery went perfectly and the team is closing her up now! They only had to do 2 laproscopic incisions to place the screws then another larger incision on her side to finish up. He was able to get her a bunch of good pictures from both approaches that he thinks she will like. Just waiting for them to finish up then pray she comes off of anesthesia easier this time.

21/02/2024

She is headed back to the OR. Today's surgery is the VBT (vertebral body tethering) portion, tethering where the fusion stopped at T12 down to L4. They will attach hardware to each vertebrae and then use a strong cord that goes through that hardware to pull the spine straight. This will allow her to maintain the majority of her flexibility through the lumbar area so she can still bend and twist. The procedure is normally done on younger kids with growth left where that growth will continue to pull the spine into alignment but her doctor has started doing the fusion/tethering hybrid a few years ago on more mature (but still pediatric) spines and has had a really good success rate, which is why we chose to come out here. The hope is to help her have the best quality of life long term.

Pretty quiet day. It feels like being back in the newborn stage with her days and nights flipped -- the last couple of d...
21/02/2024

Pretty quiet day. It feels like being back in the newborn stage with her days and nights flipped -- the last couple of days have been good but the nights are so hard for her to get comfortable. Today she took it easy, only 11 laps so far but she had her OT eval and passed with flying colors, got a shower and will get her bandages changed soon.
Surgery time for tomorrow is 8am, his first of the day again. This will be a slightly shorter surgery and should be an easier recovery.
I'm including a chart because I personally have a hard time visualizing all of this and like being able to see what they are talking about. Her first surgery fused from T4 all the way down to T12, which is kind of the ribcage area so she shouldn't lose much mobility there once she is fully healed. The tethering tomorrow will start where the fusion ends at T12 and then go down through the lumbar area, stopping at either L3 or L4, it will depend on how it all looks when he gets in there. Those scars will be smaller and on her side because of the different approach needed to place that hardware.
I will post as we get updates but I really don't expect any big news, the hardest part should be behind us -- at least that's the hope!!

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3551 N Broad St

19134

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