We had Stella’s first spinal rod lengthening – called a distraction. We were pretty unsure how the whole process, especially recovery would go as we don’t know many other families with the type of rods Stella has. Most of the older SMA “kids” waited till they were older and just had spinal fusions that is a one-off surgery. And most kids in the U.S. have the option of a new magnetic type of rod that doesn’t require surgery to lengthen, instead it is done externally, with magnets, and done in a doctors office.
I took the day before off as its quite the production to get her packed. We have to bring almost all our own machines – bipap, cough assist, plus clothes and entertainment for a few days.
We were pre-admitted the day before as usual to start TPN and lipids before her surgery as Stella cannot fast. Since this was our third time on the Ortho ward, everything went super smoothly. We got our room, IV started without too much fuss, and settled in. We managed to get a decent night sleep despite the noise and interruptions. Even with our ear plugs and white noise machine 🙂
Early the next morning Myles arrived, and they brought her down to the OR. He always does the hand over and goes in with her until she’s out. This is when I lose it. I hate to have her out of my care. I hate the lack of control of the situation. And I hate how hard this is on her. And that this and will be an ongoing part of her life. They told us to expect her back in 4 hours.
Its hard to keep our minds off her, but we grabbed some breakfast and then tried to grab a quick nap back on the couch/single bed in her room back up on the Ortho floor. We are lucky that they have been able to keep this for us in the past, otherwise we become “homeless” and the parent accommodations down in surgery/PICU are terrible. Its become my little superstition, but I always wear my Never Give Up gear on surgery days. It helps me keep my spirits up, and feel like I’m doing something. Even when I can’t.
She was out a little earlier than expected. Her surgeon said she did great and that they were able to grow her rods 10mm. He expects they will do this again in 9 months or so. When we were allowed back to PICU they already had her extubated and on her bipap! This was a huge shock and relief as it is normally a couple of days before we even think about this with Stella. This was due to the shorter surgical time, as well as the lung capacity and overall straightening benefits of the previous surgery. She was alert and wanted to be entertained so we obliged her with some Youtube and a couple games of Heads Up. She did had a little barf, but attributed it to the morphine. We decided to switch to Tylenol if possible and see how it goes. By Dinner time she was feeling even better, and her sats were stable so we took the bipap off and she did great! We were amazed at her rapid recovery!!!
Dad stayed with her overnight (the worst in PICU with only a chair to “sleep”in) and the next day while I went to work. They had a great day and since she was at her baseline for using bipap (only overnight) and has resumed her feeds and was tolerating her usual daily calories (continuous not bolus) they were able to move back up to her room on Ortho. We were thrilled! She got to FaceTime her brother and the dog back home as well as her whole class who she misses terribly! This is way faster than we had expected and are so pleased!
Dad did the next night too and very much appreciated the parent bed up on the ward. He pushed hard the next day since she was at home feeds, bipap and managing the pain with minimal medication he asked to be released. They initially resisted, saying they had booked us for a week. However, Myles was able to pull in the head nurse practitioner who knows us, and she agreed, that because of our history, we’d be fine to continue care at home.
So TWO days after surgery she was home! The only hiccup in the plan was that we had cancelled our in-home nursing wile we were admitted and because we were home so much earlier than expected had to manage without any nursing all weekend overnight. That okay, mom and dad are happy to at least be in our own beds, even if we aren’t getting much sleep! 😉
She just has to take it easy for a few days, no baths, and hopefully she’ll be back to school for at least 1/2 days next week. Maybe sooner knowing our girl!