Let me back up just a little.
Last October, after Lilly’s last expansion surgery, Dr. Anari let us know that—since Lilly had nearly reached skeletal maturity—she would only have one last expansion surgery, likely to happen late in summer of 2019 to give her time to complete any growing her body still wanted to do. Hearing that there may only be ONE MORE surgery after so many years of this life was such a surreal thing.
Fast forward about 5 months, and we noticed a spot on Lilly’s lower left side of her back where it looked like one of the anchors for her rod was eroding through her skin from the inside out. This same spot had been a problem a few years ago and had required and extra clean out surgery and has necessitated plastic surgery to be involved in nearly every surgery since to ensure adequate coverage over that anchor. So we kept a close eye on the spot, and even made an extra trip up to CHOP in April to have Dr. Anari take a look at it. We decided to keep watching it and waiting, hoping it would endure until her expansion surgery a few months later.
Last week, however, the spot was getting markedly worse, and by Friday her hardware was clearly visible just under the thinnest layer of translucent skin. I had been sending photos regularly to Dr. Anari’s nurse practitioner, and she called Friday to say that Dr. Anari wanted her to come up Monday morning and probably surgery Monday afternoon or evening.
After a full weekend of fun activity, we hit the road early Monday morning (5:30am) to see Dr. Anari in Clinic at 9am. One look told him that, yes, the time had come to address this spot. His plan involved removal of all the hardware on her left side Monday afternoon or evening as an “add on” to the OR schedule. He believes she has enough auto-fusion of her spine that her body will be ok without that rod and he will not expand the right side any further since expanding unilaterally would not be beneficial without the supporting structure on the opposite side. He'll monitor her to see how she does without that rod, and, as long as her curve doesn't progress, she'll graduate to annual visits for monitoring. The bottom line--something Lilly and I both slowly processed throughout the day as we waited--is that this would today could very well be Lilly's FINAL VEPTR surgery.
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| Lilly with Emily, Dr. Anari,s nurse practitioner |
We spent the day distracting ourselves at CHOP by hanging out in the atrium, and, once we were in a room, enjoyed a visit from our friend and fellow VEPTR warrior girl, Mary, and her sweet momma, Naomi, and her grandma too. One of our favorite child life workers, Elizabeth, also hooked Lilly up with a lego set to help pass the time.
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| Mary brought Lilly a rainbow unicorn. SO sweet. |
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| We love the beautiful atrium. |
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| THis was early in the day, as we were just arriving to CHOP after a dreary, early drive. |
At last, it was go time. It was such a different experience being admitted to a room before surgery, rather than being admitted through the OR. They brought her from her room to the pre op area, and, as usual, I was able to suit up to go back to the OR with her and sing her to sleep. She fought the sleep and I had to sing nearly two whole verses of Amazing Grace before she began to drift off.
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| Dr.Anari is such a wonderful man and we are so grateful that Dr. Campbell hand-picked him to take on his patients. |
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At Lilly's request, we took a sad photo--because of her mixed feelings about being done with surgeries
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It was around 8pm that I got word that the hardware was out and they would be closing. It was around 8:45 that Dr. Anari came out to give Tom (by phone) and me a report. He was able to successfully remove the hardware on the left side without too much "digging" in her pelvic bone, and he had to leave in place a hook on her ribs on the upper left that would have been very difficult to get out and leaving it in has no risks. He had her hardware sanitized and packaged up in a Ziploc for us to take as a souvenir! We'll now watch and see how she does with only the remaining rib to rib and rib to pelvis rod on the right. As long as she's doing all right, we'll be looking at only annual trips to CHOP for monitoring, and, Lord, willing, no more surgeries.
I was able to get into the recovery room to be with her once she started waking up, around 10pm. She was so sleepy in the OR they actually had to give her Narcan to get her to start waking up. And because of that, they were hesitant to give her any additional narcotics for pain initially. As a result, when she woke up, she was in intense pain. It was difficult to watch her in so much pain. The recovery room nurses were great and quickly got anesthesia to order her some pain medication. The balance became keeping her pain managed while also trying to keep her pulse ox sats up. Eventually, we found the balance and got to go back to our room with nasal canula O2. It was after midnight before we were starting to settle in for the night, though dosing schedules and vital sign checks meant that we really didn't get to settle down for sleep until closer to 2am.
Hospital sleep is never good, but as far as hospital sleeps go, we did all right. When Lilly has daytime surgeries, she often awakens the next morning very very early, but this time she actually was quite sleepy until after 8am. It felt good to rest, even if it was sporadic.
Today, she is still in quite a bit of pain so we're keeping pain meds on a schedule. She has been nauseous on and off, so the combination of pain, fear or pain, and nausea has kept her in bed so far today. We're going to try getting her up and moving soon--I think she'll feel much better once she starts moving.
THe plan is for discharge tomorrow (Wednesday).
I'm going to wrap up this post here, and do another post at a later date with some of the emotions I'm processing. It will take me some time to find the words.
One thing I need to say is that, even though I'm here alone with Lilly, I feel as if I have a team of cheerleaders and prayer warriors supporting us. Thank you.














