I’m happy to say that Namine is safely home, and she’s asleep in her own bed again.

I could tell the day – and the whole hospital stay, even though it wasn’t that long – took a toll on her, since she fell asleep within 10 minutes of laying her in bed. She’s sound asleep now, and her O2 is nice and stable. I just ran in the bedroom to check on her, and her O2 is at 88 right now.

We were a little late leaving for the hospital, but we got there around 10 after 10 in the morning. We checked in through Admitting, which we almost never do. Of course no one knew which room we were supposed to go to (or even which floor), so we had to wait around a bit while they sorted things out. We eventually got up to the PICU, where we had to wait some more.

They only let one parent in – Jessica sent me – while they hooked Namine up to all her monitors. I don’t know why; both of us have been there for prepping her for staying at the hospital before. At any rate, after they got her all hooked up, they let Jessica and my grandparents in. Then, we waited some more.

It was a good hour and a half, if not two hours, before doctors came in for the actual decannulation. But that’s the way things go at the hospital, as well we know; the machine moves slowly. But the actual deed came and went with little fanfare. They told Namine what they were going to do, they had her lift her chin, and they took out the trache tube. Then they taped a piece of gauze over the stoma (tracheostomy hole). Fin.

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Of course that’s not the end of things; that may have been it for the actual procedure, but the true test is how she does, now that the trache is out. So the rest of the day was really keeping an eye on her numbers – heart rate and oxygenation, mostly, but also the rapidity of her breathing. We had lunch in the room, and she ate fairly well. (Not the greatest, but it was hospital food.) She took a nap around 2:30, I think, and her stats stayed good while she slept.

She did exceedingly well overnight, as well. Namine did pass the sleep study, but she also destatted at least once. (This means she went below her lower limit.*) So her doctors really expected her to destat over the course of the night, and also expected her to need oxygen at some point. They said, though, that they wanted to first give her the chance of sleeping without oxygen, just to see how she did. It has been Jessica’s and my theory that Namine destatted during the sleep study because she was unhappy. Scratch that. She was all-out, full-on pissed off. You stick a nasal cannula up your nose, and see how well you sleep. Well, Namine proved us right. Not only did she not destat overnight, but she never even went below 83. Take that, doctors.

Someone came in at 6 in the morning to take a blood draw. I really, really wish someone would tell me about these things before they happen. I didn’t really yell at her, but she definitely knew I wasn’t happy, and I don’t think she left happy either. I don’t care. I told her she could wake up a very unhappy Namine at 7 if she must, but not a minute sooner. She did, and Namine wasn’t happy about it. She also would not go back to sleep. On the other hand, though, she wasn’t fussy, and she lay in bed playing with her Glo Worm.

And the rest of the day today was pretty much the same as yesterday, only now we were armed with the knowledge that Namine is doing well with her recent lack of trache. Dr. Denny came by with the results of Namine’s blood/gas draw (the one at 7am), and nothing but good news. One of the reasons for having the trache was because Namine was retaining too much CO2; this is no longer the case. So the trache, along with the purpose it served, is no longer needed. The other doctors on the floor rounded on her later (much later; I think I’ve made clear how the hospital’s machinery moves slowly), and declared her fit to go home. But that’s not the end of it, kids! We had to wait for pulmonology to sign off on her as well.

I think you can guess the end of this story. Pulmonology did give the okay for Namine to go home, and go home we did. She’s glad to be home, I know. And with the air compressor happily in it’s “off” state, it’s much quieter around here. I think we’re going to have to buy one of those big turbine-grade fans, just so we can have some of that noise back, such as we’re used to. (But without such a high electric bill, please.)

*To give you an idea, the average person has 100% oxygenation. Due to Namine’s heart defect, her lower limit – the percentage that is the absolute lowest her cardiologists are okay with – is 75. During the day, she averages between 85 and 92. 88 without the trache and without oxygen is excellent.

This post is part of the timeline: Jaw Expansion – an ongoing story on this site. View the timeline for more context on this post.

  • Congratulations! I am so glad you found my blog so I could find yours! My dd got her trach out 2 months ago…..life changing. I am so happy for you and your family!!!!!!

  • Jessica

    It was Dr. Gordon, not Dr. Denny that came back with the o2

  • Congrats to you and Namine, I’m happy that everything went so well. Did you get to keep the trach vent?

  • We still have all the trachs (including a brand new one that came on the day of removal O.o) but I think we got rid of the vent a while ago.

  • Yeah, you’re right. Getting my doctors mixed up again!

  • I’ve finally gotten over to see Namine…how nice she was recently decanned! That’s one less thing to worry about. Sorry you’re having problems with the nurses at the hospital but I must say it’s quite normal! Have you ever had a nurse tell you “this is a hospital, NOT a hotel!”? I just think some of them could be a bit more subtle when doing vitals.
    My twins were decanned this summer (trached for 8 yrs) after a reconstruction of their airway (LTP w/rib graft).

    Nice to meet your family!