Night went about how nights in a hospital go, not much sleep and an early morning with shift changes. In the morning things with his trach didn't seem to be doing well and he wasn't able to get air very well again. The ENT resident came in the morning for rounds and did a scope. Sure enough even though the ties were super tight, it had slipped out of place and he wasn't getting much air through his trach. The surgery hadn't worked. They said he most likely would need to go to the OR again to change for another trach. Having just had breakfast and OR time typically always requires fasting, we weren't quite sure if that meant we would stay another night and do the surgery tomorrow or have to return next week. As a kid I loved riding roller coasters, but as I got older they lost their thrill. Being on a roller coaster full of difficult medical challenges is a ride no one wants to be on, and this latest loop of made us wish desperately we could get off.A while later Dr Smith came in and discussed our options. There were so many things to consider. Because of the bone structure of his skull and a large tongue, his airway is very small to begin with. In fact almost every time we meet with anesthesia prior to a surgery you can tell they are panicked about the complexity. It's primarily their job to keep him safe so the surgeon could operate. Needing a trach that was MRI compatible due to an upcoming MRI to check on his brain tumor limited our options. Dr Smith proposed his suggestion and we debated about the pro's and con's, trying to know what the best decision would be to move forward. We weren't quite sure what to do, so we asked if he could confer with Dr Brown, his pulmonologist (lung doctor). It gave us time to discuss alone what we should do. There was a lot to consider and a big decision. Chris shared with me that he was confident in what Dr Smith and Dr Brown would choose. A close friend had shown up on Thursday prior to his surgery while I was still at my meetings and offered Chris a blessing. Because of what was said, Chris was at peace and it also gave me the peace to accept their recommendation.
When Chris was diagnosed with his brain tumor five years ago, it was like we were handed a heavy book with information to factor in when trying to make important decisions. When he developed the tracheal stenosis because of the surgery for the brain tumor, an even bigger book was added to the pile. This one even more vital and something we needed to carry with us always. Not just for us, but also for us to educate others, including those in the medical profession. So many of the people treating him were unfamiliar and afraid of a trach, we were too at first. We often were educating even respiratory specialists. Being educated, asking the right questions and being prepared with supplies for the trach has been essential in his survival. The additional complications that came with the diagnosis of myeloma has added more heavy books to the stack and our pile was heavy.
A couple hours later after discussing with Dr Brown, Dr Smith returned. They both agreed on the same treatment and so we felt comfortable proceeding. Moments later the trach was removed. Yes, you read that right. Removed. No additional surgery, no new trach. We have been told on several occasions that he would most likely have a trach for the rest of his life. In just one quick motion it was gone. Dr Smith is astounded with the stenosis in his airway. He thinks the treatment for his cancer could also be helping to soften and improve the scaring . He didn't have to treat it yesterday and he feels comfortable with the tracheotomy closing and for Chris to return to breathing through his mouth and nose. That heavy book which we've been carrying around for the past 18 months was suddenly and unexpectedly taken and placed back on the shelf. Still there as a reminder for us to so carefully guard his precarious and precious airway, but miraculously not a burden to carry with us everywhere. The wound will take time to heal as they do not stitch the stoma (opening) closed. Instead they simply let the body heal on it's own which will likely take several weeks. Relearning how to breathe normally is something he was constantly reminding himself of the rest of the day. As you can imagine, it's quite a shock and we aren't sure when it will sink in that it really happened. We spent the rest of the day thinking about how things will be different, and honestly easier for us going forward. One obvious one, talking will be so much easier. Among one other biggest improvements, able to shower without fear of accidentally allowing water in his trach. He'll also be able to go back to wearing some of his favorite shirts. Last year we changed his entire shirt collection for ones with button up necks so that things weren't tight and irritating or blocking the trach. We had contemplated trying to cut and sew many of them into a v-neck but had never had the time.
They got things rolling for discharge and eventually we were on our way home. We picked up a prescription for an antibiotic as they discovered he had an infection. Then took a nice nap at home. Chris hasn't had a decent hair cut since last May since inhaling any small trimmings directly into your lungs is typically best avoided. Being able to put a hot rag on his neck as I finished was a moment of pure happiness for both of us. Today we are back at Huntsman for another calcium check and possible infusion.
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