Mallorie had a rough start, but was watched so well by her nurses yesterday and last night, so her morphine was increased sufficiently to manage her pain. Just as Dr. T had been concerned about, the amount of medication Mallorie needed to keep her pain well-managed did seem to impact her breathing a little bit, because her bloodwork done to monitor how well she is breathing shows she might have been a little bit lazy about her breathing, although she definitely hasn't required a lot of support from the vent.
The plan today is to cut back on her morphine and see if she can breathe better and still be without signs of pain. If not, they can always go back up on the morphine and adjust her vent settings to help her. Since Mallorie's nurse last night was so much of a "hoverer," so careful about watching for signs of pain or fever, John and I felt comfortable leaving her room to get some sleep last night. Definitely, her face and eyes look more comfortable today, so we are comfortable with testing out to see if she can wean a little down on the morphine. I should say that I am comfortable with that; John is pretty anxious about Mallorie experiencing anything that resembles pain, so he's made it pretty clear that he'd rather see her dose get increased. :) Nothing is more beautiful than a father's love.
It was difficult last night to see Mallorie a little feverish and in pain, and everything looked sort of not-right. She looked puffy around the abdomen, flushed, and her face looked distressed (to me). Today, her heart rate and blood pressure are a little lower, and she just "looks" more comfortable. She doesn't seem to be as troubled by me cleaning and suctioning her mouth, or putting drops and ointments in her eyes, and I feel confident that she will do better and better as the day progresses. Dr. T had mentioned that the first 24 hours are hardest, but that healing begins right away, so we can hope for steady improvement. Funny how important it is to have what to anticipate actually spelled-out for us. Otherwise, it's easy to be anxious in the present, instead of fixing our hopes on what is to come: healing, less pain, overall improvement.
They were commenting this morning about those crazy "Fluid Balance" charts, so when I heard she was "positive" (more going in than out), I made sure to mention that I'd found a significant diaper leak onto her bed pad when I changed her last night. I'd shown the nurse, but maybe it wasn't charted. My goodness, what we don't need right now is for anyone to think she needs some "drying out." :)
So what we need prayers for today are less pain, good breathing, no fever, no infection anywhere. And of course, no seizures. Less pain will hopefully mean our girl needs less morphine, which not only can impact her breathing, but it also slows things down in the intestines, and when she starts taking things by g-tube again, she needs her intestines to be moving along. Right now when they listen to her belly, they don't hear a lot of sounds, meaning not lots of movement inside there yet.
If she doesn't have the breathing tube taken out today, for sure it should be by tomorrow. From there, clear liquids, milk, ..... home! Of course this is all my guessing, but I believe she can continue to heal from the surgery at home, provided there are no breathing issues, and she is able to take enough fluids and nutrition and all her medications through her tube. I can't really make a guess about the time-table, but I think we are on the home stretch. And there is just no place like home! Mallorie, John, the other kids, and I are already stretching and getting ready for the sprint home.
The Trisomy 18 Connection
1 month ago