Today is the day that Jaylee has waited for for 5 months! It’s Surgery Day!!
She wasn’t nervous at all, just creeped out about the IV. She has a fear of having her artery cut and bleeding out. She was actually excited for the surgery- she can’t wait to be able to run and play rugby again.
In pre-op she got her nostrils swiped with betadine, a sacral padding bandage put into place, a Baer warming gown placed on her, her IV, and her legs scrubbed with Hibiclens. And then, away she went....
Surgery should last about two hours...
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Ok... surgery took 3 hours.
Dr said “wow, that was a tough tough surgery!”
She was in recovery for over an hour and then went up to the floor before we could even see her. Recovery nurse said she was very emotional and crying the whole time. We found her bawling on the pediatric floor. It took until 6:30 to get her comfortable. Then at 9:30 she called the nurse for pain meds and she said “I can only give you Motrin because your pain is only a 3/10. Once it gets back up to an 8/10 I can give you morphine.” *#%@!!!!!!!! We finally got it under control and she made us go backward. So at 10:20 she was bawling again, and finally got pain medicine. Poor girl. Then she told me that I was being rude to the nurse, while I was trying to explain that I wanted a better pain control plan. Ugh.
In her distress, she made us laugh when she screamed out
”What idiot put speed bumps in the hallway? It’s the 21st-century!”
She slept better than I expected last night. We’re waiting on PT to come eval her this morning, and ortho to come pull her drains.
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PT got her up but after shuffling 18 inches, she about passed out. So she’s here for another night. Her pain medications got changed up so she’s much more comfortable now (off or oral morphine, on oxycodone). Her 4 drains got pulled out this morning. The kids came to see her. Jason will stay with her tonight, so I’m sure she’ll have a blast. Here's Jack sweetly checking on her...
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Sunday she got to come home around noon. With her walker, she’s been able to go 20 feet round trip. She got the best Home Health Nurse around!! (😜) Jason carried her on his back, to get her up the entry steps! Liv came to visit her, but she slept all afternoon... finally. She needed it. Each trip to the bathroom is 20 feet each way and ends in her being exhausted, nauseated, hot and in pain. She makes it there with the walker but then I push her back part way on a kitchen chair. With her HUGE bandages on, she’s finally taller than me! We’ll be roommates in the TV room for a few nights.
Jason tried to talk her into a race...
The PJs she picked out for surgery🤣
“LIVING THE DREAM”
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Monday we ventured to the Surgeon’s office. They removed her big bandages and placed smaller ones on for 10 days. Here’s what we found underneath...
Six incisions with inside stitches and butterflies, 4 drain holes left open to heal, bruising and lots of swelling. She wasn’t really able to move her ankles. There’s a lot of numbness to both of her legs. She says that her legs already have less pressure inside of them, even with all of the operative swelling! Her feet quickly get cold when they’re not elevated.
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Tuesday she slept until noon and had a slow start by then she had visitors and she seemed to turn the corner. I hope that she didn’t overdo it. She was even sitting up for an hour playing scrabble and cards. Nan and Poppop brough morgan, Carrie and Edan Lawson brought dinner and Liv spent most of the day.
Liv even sent flowers!
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Weds was her first day of PT. It seems that 0900 was too early for her. She was nauseated and in pain and generally not feeling well. The PT unwrapped her to look at everything and then showed her some ankle exercises and stretches followed by walking with a walker and crutches. I think the part that wore her out too much was attempting stairs. She tends to always push herself just a little too much.
This is WHY they worked on stairs already...
this was Jason carrying her down the steps so that we could go to PT.
4 of her friends came to hang out with her that afternoon while I had JB and Jimmy at other Dr Appts. And then... she slept.
4 of her friends came to hang out with her that afternoon while I had JB and Jimmy at other Dr Appts. And then... she slept.
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Thursday was a rough day for her. I think she overdid it a little at PT. Her legs cramped/spasmed and her left ankle to started to swell. The left leg was really sore on the outside. We scrubbed her feet, checked her wounds because she thought they were bleeding, and washed her hair. Her left foot was very pale while checking cap refill, so we’re keeping an eye on her.
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Friday AM was terrible for her again. Her left ankle got even more swollen. Her drain holes have been pulled open to 1/4 inch from the swelling:(. Her left calf was slightly warmer than the right. Her pain was an 8.5 out of 10. She went to PT where some exercise and stretching helped, but only minimally. We tried to get in with her surgeon for an eval, but he’s out of town. His colleague ordered a stat bilateral ultrasound to rule out DVTs. Thank God it was negative!!!
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Saturday was a slow day, so to brighten Jaylee’s day, we SLOWLY ventured out for a family + Liv trip to Olive Garden. Jaylee held up better than I expected.
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On Tuesday her left foot was still swollen badly, but she was able to get around better. After shampooing her hair at Meg’s, she was up for a trip to the grocery store via a motorized cart!
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Weds we saw Dr Carroll’s PA. He says her legs look good, even the swelling and painful drain holes. He removed her big wraps and cleared her for showers!!
Thanks for the BELL Becca and Audrey!!!
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Thursday she surprised me by side-stepping upstairs!!!! She took a shower on a stool and is currently hanging out on her extremely-comfortable bed. A few friends visited and (literally) 7 seconds after they left she said that she felt “lonely” up in her room. I have no idea how we’ll get her down tomorrow!! Doing steps is HUGE for her! She can still barely move her left ankle due to swelling. And steps used calf muscles!! She’s off pain meds usually because when she’s sitting still she’s quite comfortable.
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She missed our beach trip to OCNJ. She and Jason did come for 1 day. She was doing so much better on Sunday than when I saw her last on Friday night. She’s always so good spirited!
She even walked the beach with me (with a shovel for a crutch)!!!! She took lots of videos during the day and spent her time home alone making a super cool video.
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Friday was 3 weeks post op!! She’s really coming along. Her PT told me today that she’s doing very well. She can walk without her crutches most of the time. Her swelling has gone down a lot. She even tried to jump, which was hilarious because she did not leave the ground. She can independently, slowly, get up and down the stairs.
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Monday she did awesome at PT, even went without crutches. The PT re-evaluation showed that her swelling has gone down everywhere, except in her knees(?). We didn’t even know her knees were swollen!
However, her right lower outside incision looks like it’s getting infected. It’s a little more yucky today than yesterday, so we have an appt with Dr Carroll at 2:30. 🤞
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There was no infection:) the fluid is edema seeping out of her. Her left leg is oozing a tiny bit too. Once they heal up (probably by next weekend) she’ll be able to swim! This really excites her! Her surgeon saw her twice this week, to keep an eye on her wounds. She’ll see him again right before school to decide what she can/can’t do at school. PT changed her down to only twice a week since she only gets 30 visits and she’s coming along so well. They want to be able to help her get back into shape with intense exercises a month or so from now. She attempted to skip and run, which was hysterical. I just cant figure out how to put a video on my blog anymore.
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Five weeks post op and she’s walking all over the place! She’s even jumping -and getting air- at PT.
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6 1/2 week post op appt...
GRRRRRR!!!
I am SO annoyed right now. Jaylee’s calves hurt her a lot but she also had terrible foot pain. This was an issue years ago so the Pediatrician did an X-ray and told us that it was completely normal. We brought this up to the surgeon at every visit- except one. Every time he acted like it was his first time hearing it, which was annoying, but he kept insinuating that it was the high pressures causing pain to radiate down into her feet. He never looked into it, despite us asking if tests needed done before her surgery.
The first four weeks after surgery she was foot-pain-free. Now the pain is creeping back. We brought it up yesterday. Again, he was hearing us for the first time.
*#%]!!#%^
He says that she probably has an extra nevicular bone (like I do and we told the Pediatrician) on exam. I mentioned the X-rays from 2015. He peeked... “OH! You have a HUGE Accessory Navicular! “Hmmm... we’re in a pickle because treatment for that is 8 weeks in a boot, where treatment for your MAJOR surgery is to keep moving. Hmmm...”
He could tell I was annoyed so he assured me that he never would have done both procedures at once. Ok- but maybe the FOUR months that she was sitting around doing nothing... AAARRGGGHHH
I just want to punch something- and then sit and cry for a while.
We think we will try to transfer her to my Ortho Dr after my appt next week.
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September 25
9.5 week post-op appointment
Man, oh man. Jaylee’s foot has still been bothering her, while her calves have zero pressure pain! We thought the Dr was going to clear her to start practicing rugby today.
We thought.
Instead, he casted her right foot and wants her in a boot for 2 weeks to see if we can get her foot pain under control. If not, she’ll have to have the surgery.
She’s bummed. I’m a little in shock. Her PT is pissed.
Let’s hope this works!!!!
When we were leaving the appt, we noticed some clear yellow oozing from a surgical wound on her left leg- hope it’s nothing.
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October 2
10.5 weeks post-op
I’m in Hawaii!!!
My Mom has to take Jaylee to the Dr today for an obvious infection since yesterday.
They started her on antibiotics and did a culture to check for a staph infection.
She says that her right foot feels no better yet- 1 week down, 1 week to go...
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Well, antibiotics are working:)
Culture was positive for staph and strep!!
