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Jasmine’s Journey
We knew after Jasmine’s initial post-adoption evaluations that she would one day need a spinal fusion surgery to help correct the curvature of her spine and allow her to breathe easier. The ortho team said that we would need to proceed after her spine reached the 60 degree curvature mark.
After 18 months at home, the time had finally come to prepare for surgery. We picked a time that would allow her to heal before her sister’s wedding. January 13th was the day that was picked. We would only be home for two weeks with Max and Elyse but the surgery and subsequent hospital stay was only to last 7-10 days so we thought we would all be fine.
The children’s hospital is 2 hours away and we had to be there early in the morning for Jasmine’s surgery so we stayed overnight in a hotel in town. We let her pick how she wanted to spend her evening. She chose HuHot and a movie. This girl loves her spicy food. If you’d like to try Jasmine’s HuHot recipe add six ladles of the spiciest sauce along with 3 ladles of hot chili oil and then watch as your cook’s eyes water. You don’t even have to eat it to get the full effect. Your eyes will water just sitting next to her.
Jasmine wanted to go to a movie and she chose the movie, Annie. We weren’t sure how she would react to it, but she was adamant that she wanted to see it. Jasmine’s loved the movie and when I asked her why she said that Annie was happy no matter what, that Annie made the best of her circumstances, and Annie didn’t forget her friends. Jasmine also said she like how Annie understood family was more important than money.
Jasmine slept relatively well and said she wasn’t very nervous about the surgery. She was, however, very concerned that we may leave her alone in the hospital. This was a valid concern because it had happened to her in China on more than one occasion. I can not imagine what that must feel like as a child to go through a hospital stay alone and yet it happens to many children each and every day. The endure open heart surgeries, spinal fusions, shunt surgeries, etc. all alone. It is truly heartbreaking.
We told her over and over again that nothing would make us leave. We loved her and we would be by her side every step of the way. We would be there when she went to sleep and we would be the first thing she saw when she woke up. She would never be alone again.
Jasmine’s initial surgery went well and the correction on her spine was amazing.
She was released from the hospital six days later.
Five days later she started running a fever and had chills by the late evening we knew she had to be seen. We were hoping it was something simple like a urinary tract infection but it was a wound infection. They admitted her to the hospital and then to the PICU at our local hospital. In the morning they transferred her by ambulance to the children’s hospital.
They took her to surgery to irrigate her wound and redo the bone graft. During this surgery they noticed that she had a tear in her dura. They patched it and hoped for the best.
A few days later she started having a horrible headache, her back drain went from very little output to 350 mls and we knew that her cerebral spinal fluid was still leaking. The took her back to surgery to put in a lumbar drain and she would have to lie flat on her back for a week as she healed. For Jasmine this was torture because lying flat on her back is the hardest position, the most painful position to be in. She was not allowed to roll side to side or sit up at all.
After a week, she was allowed to slowly sit up. A few hours later we noticed leakage from her back wound. The dura had not healed over as hoped. She would need another surgery to patch the wound.
They took her back for her fourth surgery. The plan was to just open her wound a little and repair the leak but when they opened the wound they noticed that the fluid looked cloudy. They decided to reopen the whole wound and irrigate the area again along with doing the repair to the leak and redoing the bone graft.
Jasmine was again required to lie flat for a week. She was noticeably weaker and had horrible stomach pain. We thought initially it was because she really hadn’t eaten much for weeks and had been on considerable pain medication for the back and hip pain and also for the excruciating headaches caused by the spinal fluid leak. We later learned that she had pancreatitis. The poor girl just couldn’t catch a break.
The plan was to slowly introduce food, but she just couldn’t eat. She constantly said her stomach felt full and hurt so much. We had been in the hospital, during this second admission, for an additional 30 days so the decision was made to put in an NJ tube to allow her to go home and heal. We packed up again and headed for home with hopes that all would go well this time.
Jasmine came home on tube feedings and she had a PIC line for iv medication for the wound infection. She has done amazingly well and just a few short weeks later she was allowed to take out the NJ tube and remove the PIC line.
I don’t know why Jasmine went through what she went through. It would seem to me that our girl had been through enough in her lifetime. I do know that she touched many lives while she was in the hospital, many people heard her story and what it means to grow up in an orphanage.
There are many more things I want to write about her stay, but it will have to wait for another day. I am having a hard time putting into words what it meant for her mentally and spiritually to be in the hospital. There were issues with people understanding her special circumstances. The hospital stay brought up old memories and pain. I got to see first hand what it truly means to have post traumatic stress disorder. I’m not sure I will ever adequately be able to explain it but someday I will try. It’s just too painful right now.
For now, she is healing well. She will be on oral antibiotics for at least six months and possibly up to a year. Hopefully, her hardware will not have to be removed but they will decide that at a later time. For now, she is regaining her strength and eating better. She is sitting up straighter and breathing much easier. Physically she is healing well. Emotionally the healing will take a lot more time.
It’s been a hard, bumpy, long road but the journey is a lot smoother right now so we are enjoying the relative peace and quiet and looking forward to Cassie’s wedding in May.
