Home is Best!

I was finally discharged yesterday afternoon at about 2:45 pm. It was so sweet to walk out the door, get in the car, and make the lovely drive through Forest Park to our home.

There is something just so right about being home. I often think about “The Last Battle” by C.S. Lewis and all of the symbolism there about what is real, what is a shadow, and what brings us hope, peace, and comfort. I always feel a sense of my shoulders relaxing and breathing a sigh of relief to be home – with my loved ones, in a place that feels like it fits.

But I will say that being home is no easy row to hoe! Here’s what my schedule looks like:

6:00 am – Flagyl Infusion (30 minutes)

1:00 pm – TPN Infusion Ends (conclusion of 16 hour infusion)

2:00 pm – Flagyl Infusion (30 minutes)

3:00 pm – Test Blood Sugar (5 minutes)

7:00 pm – Ertapenem Infusion (30 minutes)

7:30 pm – Caspofungin Infusion (60 minutes)

9:00 pm – Test Blood Sugar (5 minutes)

9:00 pm – TPN Infusion Begins (beginning of 16 hour infusion)

10:00 pm – Flagyl Infusion (30 minutes)

11:00 pm – Test Blood Sugar (5 minutes)

I’m really appreciative all of that stuff those wonderful nurses did for me while I was in the hospital! I’m so glad I have the freedom to do all of these things from home, though. There’s not a lot of free time, but that’s okay – I’m supposed to be healing up and resting. That’s pretty much built in to that schedule, wouldn’t you say?

I gotta give a plug for the home health nurses. They’re amazing. Last evening Nurse Diane came by the house at 7pm and brought a boatload of equipment (sharps container, IV pole, all of the IV meds I’ll need until my next scheduled delivery day, TPN pump and equipment, saline flushes, alcohol wipes, glucometer and supplies, and more!) and a determination to help me get settled and set up for the night. It was a lot less daunting this time, in that I’ve already done home IV antibiotic therapy before.

Adding TPN to the set up makes it all much more complex. My TPN infusion takes 16 hours, and some of my antibiotics are not compatible with TPN, so they have to be spaced in such a way that they happen when I’m NOT infusing TPN. But, after my first 24 hours at home, I gotta say it’s going well. There was a nurse out this afternoon to double check and make sure I understood how to set up the TPN and the entire regime. I had to go show my proficiency – and was given a gold star. I’ll admit it – I was a little proud of myself. J

Tomorrow another nurse will come out to do one more teaching session to make sure I’m truly proficient with setting up the TPN and juggling all of the other meds. She’ll also draw labs to make sure my levels are appropriate and the next batch of TPN is mixed appropriately.

This is all pretty amazing, really, when you think about it. Ten years ago would they have been able to send someone home NPO for six weeks and make sure they’re nutritionally gaining ground, not losing ground? I know it wasn’t all that many years ago when prolonged IV antibiotic regimens required prolonged hospitalization. I’m so thankful that I can do this from home!

So it’s kinda weird to be home – in terms of the whole NPO thing.

The first thing I went to do when I walked in the door yesterday afternoon was go pour myself a glass of iced tea. I reached for the glass and then realized – “Um, oh yeah, I can’t do that.”

I find myself really missing food, but not tempted at all to put anything in my mouth. That’s kind of weird.

I think about all kinds of foods – at the most random times! This morning I was doing my 6 am Flagyl infusion and all I could think about was thinly sliced black forest ham, rolled up with a slice of Tillamook cheddar cheese, around a dill pickle spear. Why I had that focus at 6 am I have no clue!

I think my biggest challenge will be figuring out WHEN to shower. It will either have to be between my 1pm end of TPN and 2pm Flagyl infusion, or before my 7 pm Ertapenem infusion. I’ve always been a first thing in the morning shower and shampoo the hair girl. This is kind of sending me for a loop! But I’ll figure it out.

My big goal right now is to figure out how to get to church on Sunday – energy wise, and without going looking like a scary hair lady. I may have to break down and curl my hair or something. We’ll see! J

So that’s the scoop!

I’m pretty weak, but I feel good, and I’m continuing to pray for healing – big time!

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3 Comments Add yours

  1. Tara Schmitz says:

    Wow! What a schedule! So glad you are home and getting it all under control. I will join you in your prayers.
    God bless,
    Tara

    1. dinamcb says:

      Thanks Tara! Yeah – it is pretty daunting trying to handle the schedule. I’ve got a notecard with everything written down on it to keep me on task! 🙂

      Thanks for the prayers, they are such a blessing!

      dina

  2. Roslyn Dahl says:

    Hi!

    I found your blog and wondered if you had heard of the Oley Foundation.

    We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at http://www.oley.org.

    In particular you might be interested in the numerous articles about the TPN (also called HPN – for “home” parenteral nutrition); medical information, tips for daily living, and coping strategies.

    Newsletter article index:
    http://www.oley.org/newsletter.html

    You might also be interested in meeting other people who have been there, done that — including people who are NPO. You can try these links below — or feel free to contact me and I can make a more personal match.

    • Meet Patients Section (try all three links)
    http://www.oley.org/volunteers.html
    http://www.oley.org/call.html
    http://www.oley.org/forum.htm

    Finally – a great resource for home TPN.

    • TPN Complication Chart
    http://www.oley.org/charts/newHPN.pdf

    If you have any questions or would like to be introduced to another family, feel free to contact me.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    dahlr@mail.amc.edu
    (800) 776-OLEY

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