I am home now. The plan is to get some sleep – actual sleep in my own comfy expensive bed – before going back to the hospital tomorrow morning, then going to work. But first, an update! Because much has transpired in a single day, and it feels like we’ve been there a week.

We started out the morning with Namine’s heart rate over 170, which is very high for her, and it eventually topped 190. Supposedly she was medicated all through the night, and by medicated I mean morphine. Turns out that sometime during the night, she blew her IV, thus making unknown quantities of the morphine injected into said IV moot – we have no idea how much she actually got, and that would explain all the waking up and squirming and fidgeting.

Once that was figured out, they gave her morphine in her other IV, the one that had not (yet – but I’ll get to that) blown. She calmed down quite a bit and slept. Her heart rate went down to 130, which is still pretty high for a resting state, but a whole lot better than 190.

They let the sedatives wear off, and she slowly woke up – discovering something new and distressing. Her lips were held together by the dried blood in her mouth, residual from the surgery. Once Jessica cleaned most of that off (some would not come off without tearing her chapped lips, so we left it alone), she could open her mouth, becoming once again the girl we know. She half-smiled at people (still rather awkward due to the distractors), pointed at things, and indicated that she wanted water. I can only imagine how thirsty she was!

As afternoon gave way to evening, it became time for her nightly cares. I did her G-tube cares, and we decided we’d do her trach cares, then give her some more morphine before doing her distractor pin cleaning. From the moment we sat her up, that proved to be a mistake. She has not cried like that in a long, long time, and now we know that she is in quite a bit of pain yet from the distractors being in place. “All they feel is pressure,” my ass. I think it’s more than just added weight and pressure. I mean, they did drill through bone to place them, after all. All that said, we finished her trach cares while causing as little pain as possible, then laid her back down. Then the nurse tried to give her some morphine, and discovered – you guessed it – Namine had blown her other IV. The nurse removed all the tape and needle and tubing, and went ahead and did the pin cleaning. Then I held Namine (more like held her down) while she and another nurse inserted another IV line. Talk about misery. I thought I hadn’t heard her really cry in a long time? That was nothing compared to reinserting the IV.

After all that misery, they gave her the long-awaited dose of morphine. Namine fell asleep shortly after that, and I kissed her and Jessica goodnight.

One final note before I close this particular chapter. I don’t feel I need to defend the position, but I want to explain something. Jessica and I are normally quite against medicating children, particularly our own, as opposed to comforting them, holding them, and talking them through. But I swear to you, I have never heard such pain in my daughter’s cry as I heard tonight. It broke my heart to hear it, and I think that a quick fix to numb the pain and distance her a little from it is justified. It’s not something we’d like to repeat, but we deemed it necessary, and we’d make the same decision again.

  • Michele Eiche

    You did the right thing. Don’t feel you have to justify yourselves. She’ll heal faster if she isn’t in pain. I’m sorry this is so hard on all of you. Hopefully the pain will ease for Namine soon. Love you all.