Namine is being discharged from the hospital this evening. Much has happened since the last post, not the least of which is the foot surgery schedule change.
When Namine’s ortho doc consulted with us after completing her first foot surgery, he told us that each incremental surgery would occur every two weeks. Now, it has become apparent that her feet are growing and healing fast enough to warrant a surgery every week. So, I think you can guess where we’re going to be every Monday. It’s unfortunate, but it also might speed up the whole process of fixing Namine’s feet. It all depends on how resilient and strong her feet really are.
I’m pretty sure I wrapped up last night’s post around midnight, because I vaguely remember going to bed at about 12:15. I say “bed,” but I really mean “unrelentingly uncomfortable bench that passes itself off as a couch.” Of course in the PICU at Children’s Hospital there are no beds, not for the parents. I would argue that even those beds are not the most comfortable for the patients, but I digress.
When I finished up the post, Namine had been asleep for a couple hours. Last week, the first night in the hospital was a grueling ordeal – every 15 minutes, sometimes less, Namine would start crying from the excruciating pain in her legs. (We’re pretty sure she gets muscle spasms. Thankfully, the pain meds she has now keep that in check.) By comparison, this was nothing. Namine didn’t cry at all, her oxygen saturation was staying in the mid- to upper-eighties, and by midnight, her heart rate had come down from 160 to a nice and easy 110. It seemed to me that it would be a calm and peaceful night, one that would allow Namine to get some much-needed rest and speed us on toward going home the next day.
I could not have been more wrong.
At 3:00 in the morning, Namine’s night nurse decided to go against our firmest rule when we’re in the hospital: do not bother Namine. (That is, unless she’s in distress. Use your common sense, kids. I don’t think deep sleep with good stats constitutes distress.) She decided it would be a good idea to get Namine’s blood pressure, which she doesn’t even like when she’s awake. So of course Namine started to cry; since by this point her pain meds had worn off, I’m sure she became aware of her legs hurting, and this probably contributed to her crying as well.
The nurse helpfully asked me if, since her pain meds had worn off, I’d perhaps like to give Namine more. Well, isn’t that convenient, I thought, fighting to contain my anger. I’ve blown up at nurses before for stupider infractions, but anger would solve nothing. Since she was now awake and in pain, I decided that yes, giving her something for the pain would be the best option. Namine took her meds nicely, as she always does, and I sang to her and rocked her until she fell back asleep.
The rest of the morning is pretty much a blur to me now, but it will suffice to say that Namine desatted – that is, her oxygen saturation rate dropped below its lower limit – for the rest of the morning, until 6:45 or so, when the nurse gave her a breathing treatment. I know now that it was because I gave her the pain medicine, which includes a muscle relaxant, at 3:00.
Normally, we’d have given Namine her pain meds when she went to bed – between 9:30 and 10:00, on a typical night. If we don’t wake her, she sleeps through the night. I remain convinced that is exactly what would have happened if not for Namine’s nurse. But because Namine was woken, she was given more meds. As the special needs doctor explained to me, this resulted in Namine taking shallower breaths, and this in turn led to lower O2. (Trust me, I don’t think this will happen at home.)
Another side effect of Namine’s extra relaxation is that she developed a raspyness to her breathing. Thankfully, this went away once she was awake, breathing, and coughing the crap out. (It’s so wierd to not have to suction her. Just sayin’.)
Anyway, Namine should have been seen this afternoon by ENT (just to make sure her sutured stoma is healing as it should) and I think respitory, maybe pulmonology as well. We want to set up a swallow study for Namine, just to make sure her pipes are behaving themselves.
Never a dull moment, that’s for sure. Time to go pick up my wife and daughter, and take them home. Until next time.