Posted 2/7/2016 11:33 PM (GMT -7)
Made it home-finally.
For some reason, this surgery has kicked my butt, far more than any other. Not quite sure why, since I should basically be eligible for a free surgery, if I had one of those punch cards.
The Nissen I had done a few years ago definitely did the job of preventing reflux/aspiration and the revolving door of pneumonia admissions, but swallowing is always something nice.
Drs here at home and down at Duke had a pow-wow and decided that partially undoing the Nissen might be the answer. With my cornucopia of medical fun, my nutrition had to be way upped. After a few months of tube feeds with an added protein supplement, it was time for the fun to begin.
Surgery began around 10ish and I woke up in recovery around 4, quite a bit later than I was expecting. Surgeon explained that the surgery took much longer than expected, due to the amount of swelling and tissue involvement. The end result-hopefully just enough of the nissen has been loosened to prevent choking, but it is still tight enough to prevent the aspiration/pneumonia cycle.
Now it's time for me to lay low and heal, which is so hard for me. I did make it to my little man's basketball game this morning, but that was about it. He and I vegged out watching hockey and then the super bowl,nothing too exciting.
Little on the calendar for the next 2 weeks in regards to medical stuff. I see the hematologist Wed for blood work and a port flush(exciting times I tell you!), and the eye dr Fri to make sure that the shingles that popped up while inpatient around the eye is resolving. I ALWAYS develop shingles after an operation, without fail. Luckily while I'm inpatient it can be hit hard with IV meds. I have a huge bottle of meds at home that I can take as soon as I feel that telltale tingle.
Surgical recheck is in 2 weeks, and if that goes well, then I will head on down to Duke to chill with the team and start up the next course of treatment. If everything heals well, I will begin Cytoxan and Rituxan-Fun Times:)
I feel like my life is one never-ending checklist of medical procedures, appointments, tests, and so on…
One box gets checked off, and there are an endless number that follow.
Thanks for the kind thoughts and prayers, I really appreciate them.
Please know that I think of all of you, as well.
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD