We’re coming down to the wire….


Mariella started her inhaled steroid taper yesterday.  We’re getting her off QVAR first, then off the Symbicort.   It will take about 2 week.  By the day she’s admitted (July 5) she will be steroid free.

I need to start thinking about packing.  Her other stays have only been overnight, one or 2 nights…and she was happy to stay in a johnny.  I’m pretty sure she isn’t going to want to stay in a johnny for a week.  I did pick up some nice short and tank sets that can double as jammies…so maybe I’ll just pack those.  She can sleep and play in them.

Entertainmentwise, I think we’re covered.  I got her a new game for her DS (plus all the other ones she likes) and I’ll get her a new movie.  I’ll pack both laptops so that she can have one too.  I still have to get a few craft kits to bring.  I also know they have a great playroom for the kids…and I’m sure there will be a Child Life department as well.  We’ll go to the library next week, and she can get a few books to bring too.


As for me, I don’t want to pack to heavily, but I don’t want to NOT have what I need.  Mariella and I can share shampoo/conditioner and soap.  Neither one of us NEEDS a hair dryer…though I DO think I’ll pack my straightener.  I’ll load up my kindle and hopefully, the hospital doesn’t block social media sites. (I don’t know what I’ll do without Facebook and Twitter to keep people up to date on what’s going on.


Right now, I’m most nervous about the taper.  I know it’s safer than just cutting her meds cold turkey in 2 weeks, but I’m just very nervous about being home as we decrease her dosage.  I KNOW that the risk of anything happening is SO slight that it’s nearly non-existent, but I’m still nervous.  I often feel like “other people”…you know…when people say, “oh, that can’t happen to me…THAT happens to ‘other people'”  Yeah…’other people’…that’s me.

So, my list for Mariella is

  • pajama/clothes
  • robe (she loves her robe)
  • slippers
  • flip flops or sandals
  • lap top/charger
  • DS and games/charger
  • ipod/charger
  • books
  • craft activities
  • easily packed games
  • toothbrush and toothpaste
  • comb and detangler (darn curls) and hair ties

For Me

  • clothes for a week (my clothes are SO much bigger than hers, they are going to take so much room)
  • laptop/charger
  • ipod/charger
  • kindle/charger
  • other personal care stuff

For both of us

  • shower stuff

Does that look like a good list?  Is there anything that I’ve forgotten?  For those of you that travel, any tips on how I can keep my stuff light…I’m not used to traveling to a place where I don’t have access to a washer and dryer…and a weeks worth of clothes just seems like a whole lot of stuff.

10 Responses to “We’re coming down to the wire….”

  1. 1 wheezyheron June 22, 2011 at 3:30 pm

    Hmm, can you get R to bring a change of clothes part way through? That would lighten the bulk a bit?

    Uh, what’s a johnny? I can only think of john, as in slang for toilet, which clearly makes no sense!

    Probably obvious, but don’t forget meds for yourself…what with the additional stress and all.

    Really, really hope you have twitter and fb access… either way, know that we’re all thinking about you ❤

  2. 2 Kory June 23, 2011 at 5:48 am

    Will it be one week for sure, maybe less or more? I’d pack some snacks for M and yourself. My iPad, videos, etc. keep me pretty content for extended stays (6+ months), so not sure if the laptops alone can function as your kindle, iPod, etc. just for space-saving. Treatments, tests, sleeping, etc. really make the time fly in itself. But snacks are a must for me! 🙂

  3. 3 Kory June 23, 2011 at 5:52 am

    Also, if M does airway clearance, may want to bring your own Vest or Acapella, even if the hospital can provide one.

    • 4 Sara C. June 23, 2011 at 9:58 pm

      Good point…I’ll be sure to throw it in…especially if she really craps out…she’ll need it.

      will the hospital staff get pissy at me if I’m the one telling her to do it. THIS pulmo wasn’t the one who ordered it, and her orders are really PRN.

      Also, I’ll have her rescue inhaler and chamber…but they’ll want to know that stuff. Also, our insurance co doesn’t pay for Prevacid, so I’ll want to bring that, because it won’t be able to be ordered…probably.

      Ugh…I’ll have to call tomorrow to ask about her gastro meds.


  4. 5 kerri June 23, 2011 at 9:55 pm

    snackssnackssnackssnackssnacks :].

    i think ya got the bases covered otherwise. I’m with tash, though, if you’ll be having visitors, maybe get them to bring you new clothes and take your others with them so you don’t have to pack as much?

    i wish you could bring ME so i could help you out/give you a break. Hugs.

  5. 6 Sara C. June 23, 2011 at 10:01 pm

    I’ll have to see if Rob is going to be able to come out one morning, mid week. It’s about a 2 hour drive…but he might actually be heading that way one night for a ball game…If it’s like Wed, we can totally plan for him to bring me clothes…GREAT idea.

    I’ll have to plan on snacks too…I really wish the doc had an email, so I could just ask everything at once…I’ll have to ask when I call tomorrow.

  6. 7 Kory June 24, 2011 at 12:25 am

    Won’t hurt to leave her airway clearance in the car, but I think the doctor needs to order it technically. If she needs it, the hospital will provide it, but with the Vest, particularly, some people like using their own machine but it likely needs to be cleared through engineering or something to plug it in.

  7. 8 Kory June 24, 2011 at 12:29 am

    Won’t hurt to leave her airway clearance in the car, but I think the doctor needs to order it technically. If she needs it, the hospital will provide it; I just mentioned the Vest, particularly, because some people like using their own machine but it likely needs to be cleared through engineering to plug it in anyways. But it’s probably best you let the hospital do all M’s treatments just so they know she’s getting worse (if she does).

  8. 9 Elisheva June 27, 2011 at 5:16 pm

    Sounds like an adventure! What does M think of all this? And what’s a johnny? Will you be able to get any breaks during this time? I hope you can get on FB. I’m looking forward to updates. I hope all goes well!

  9. 10 Kat June 28, 2011 at 12:16 am

    One packing trick I use is to bring socks and undies I don’t mind discarding but that also is more to clear room on the way back from whatever destination I’m going to. As a nomadic college student I really have it down to a science such as I bring a usb wall plug in and usb cables for all my devices saving myself some valuable charger space. If laundry really is a necessity you might be able to find a laundry mat near by to do a quick load at? My other trick is to wear my bulkiest clothing items on the intial traveling day (sweatshirt, tennis shoes, etc).

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