The day began with that eerie drive to Christ Hospital at 5 a.m. This time though, Juliana was in the car with me and the outcome was more predictable. Today was the baclofen pump insertion surgery. Since I made you live the details of the baclofen trial with gory detail I will cut to the conclusion of this one and say the surgery was fast and successful. Juliana turned to her left to see Chris sitting there and asked if she could wear his hat. Not sure why, didn’t much matter, Chris the dutiful fiancé simply put it on her much smaller head.
We were home just after noon and Juliana spent the day resting and healing and coming out of the fog of anesthesia. The dosage is started at 100 micrograms per 24 hour period, the same amount that was given to her in full injection for the test so as you can see, they start slowly and build up. She will be evaluated by the rehab doctor for the next few days and the dosage will increase as appropriate. In a perfect world, (which we don’t live in) in a few days she will be free of the spasticity and tremors that have prevented her from doing the everyday things like eating and typing on the computer. In THIS world what will likely happen is that the dosage correction will happen over multiple weeks, the spasticity will decrease slowly but not completely and the tremors will improve but not disappear. Then we will resume her schedule of physical therapy and braces but hopefully with a fighting chance of her recovery. Time will tell on this one.
The pump is likely to be part of her anatomy for life. With advances in medicine and technology however, we really don’t know what will be available in 7 years when this pump is supposed to be replaced. Now that Juliana has ‘replacement parts’ (VP Shunt and now this baclofen pump) that need maintenance I am going to have to keep a log like I do for my car and make sure we get her parts tuned up and replaced in time. Just kidding. Although I should, I don’t have a log for my car maintenance but I promise to take better care of my daughter.
We are reasonably sure this medication, delivered in this precise way will offer us the best results out there so far. Goodness knows I have tried to avoid this for 18 months and tried every alternative and prescribed option available yet, here we are physically not much closer to the end. The next 48 hours will include watching Juliana for a spinal headache, nausea (again?) and pain or infection at both of the surgery sites. Her ‘pump bump’ on her lower abdomen currently has her whole abdomen a little swollen and I couldn’t help but think that is the way she might look 4 months pregnant. No sooner did I see it and smile with the anticipatory thought then I caught myself stifling the sadness of a heavy secret. I haven’t had the heart to tell Juli that actually getting pregnant while having a baclofen pump is not advised. The doctor said, "it’s been done" but he didn’t have any patients who actually had.
It was the one bit of information given to us during the trial that gave us pause in our decision but we had to think about what was right in front of us, not what might ever be and to correct this problem we weren’t left with any other options. So, if Juliana gets well enough to cross that baby-making bridge, we will figure out a way to do it then. No need buying a map for a subdivision that hasn’t even been built yet, right? At the 9 p.m. patient check, no signs of complications or side effects. Maybe this time fate checked their record books and figured the side effects from the trial was enough (maybe fate even reads my blog!)
Another positive: other than today’s momentary disruption in her speech due to the surgery tube irritating her throat, we are also seeing slight advances in her articulation. Yeah! But an even more obvious and noticeable change is in her actual conversation: it includes more moments of happiness and joking in her conversations. Her latest fun is being poked at the realization that Chris is approaching 30 (he will be 28 in November) but she took to calling him ‘Old Man’ for the better part of the morning and that seemed to amuse her without any provocation. She LAUGHED three times today and although it didn’t resemble her former laugh, it did sound natural and (dare I say it) easy. One more thing I have been allowed to be reintroduced to with my new daughter and it was warmer than the Vegas sun.
That ‘Vegas sun’ was perhaps why I am seeing the forward motion I was missing before. I took a much-needed step away from the situation as I vacationed with family and friends in honor of my son Dylan’s 21st birthday. (You recall that traditional ‘Vegas vacation’ I told you about?) It wasn’t at all relaxing in the traditional sense but it was joy and laughter and free from weighty obligations. The cast of characters was comfortable and familiar and we had just a complete blast. And to come back after that trip to tales of Juliana’s witty conversation, pleasant disposition and see for myself her fragments of happiness, solidified the importance of the occasional absence. The vacation punctuated by the surgery to change Juliana’s course feels a whole lot like a brand new chapter. I hope you look forward to reading it as much as I look forward to writing it.