Thursday, August 8, 2013

Health Updates On Mommy And Avery

The cool kids historically make really poor choices so...not buying it.

I went back to Chemo yesterday.  BOOOO!!!  Yay.  No seriously yay.  The sooner I start back up again the sooner I'll be done.  Here are some updates on me:

1.  I had a PET Scan last week.  It was a pretty straight forward experience.  Being stuck in a tube was not as bad this time because I was smaller and more agile and felt capable of scooting out of there if things hit the fan.  Plus, the part in the tube was only 25 minutes.  In case you're unaware, when you have a PET Scan they need to inject you with a RADIOACTIVE SUGAR (or tracer) and you have to sit around and let it circulate through your body but not move too much so that you don't metabolize it before the test.  It is very odd to sit there and be casual while radioactive stuff that came in a giant looking syringe THAT IS ENCASED IN LEAD is circulating through your body.  There is no lead in my body so...that's math you shouldn't do when you're about to be injected.  Overall though, it was pretty easy.  At least I wasn't getting stabbed in the butt.  Any results?  Well, it turns out that I really do have cancer and this was not all just an elaborate misunderstanding hinging on the mass overreaction and systemic incompetence of multiple medical organizations that I was hoping for.  They feel it showed signs of progress, but really this needs to be looked at as a baseline because it is the best imaging I've had done since this started.  

2.  I went back to Chemo yesterday.  Did I mention that yet?  Ugh.  It was really hard.  I can't begin to tell you how hard it was to go back.  I was coming off of a 4 week break and during the last 2 weeks I've had the most energy I've had since this started.  I could think so clearly.  Chemo Brain is real and it is so annoying.  It was so nice to have the cobwebs cleared away for a while.  I don't want to go back to that and I already am and yuck.

(This is a warning to my brothers: this next section is about veins, skip this and go to the part about Avery)
3.  I need advice from Chemo Veterans and Medical Professionals about my veins.  I have terrible ornery veins.  There are the expected effects of the chemo on my veins which is that they get hard and yucky at each site I've received chemo, but my veins are apparently just really a puzzle.  The nurse always gets excited because they put heat packs on them and they jump right out and look good, but that means nothing.  The nurse will get the line in, get a great blood return, and then it doesn't work or it is really painful when the meds start pushing or the line blows.  Yesterday was my second chemo day where it took 4 tries to get a line placed.  It rarely takes less than 2 and I won't even count the day she "got it" in one try because after how well my veins tolerated the actual chemo yesterday I realize the day the line went in on the first try was way too painful and I had nerve pain in that arm for the next week and a half.  A Medi Port is not a great choice because I should only have 5 treatments left.  It doesn't seem like the best idea to get something surgically implanted that I will have to keep for a minimum of 6 months for only 10 more weeks of treatments.  A PICC line is out of the question because I just can't have that hanging from me with little kids around who could pull it out of place.  I know that the first thing I have to do is be more assertive with my care givers, but, if you know stuff about veins...is this something you're familiar with?  I know it has something to do with how I'm put together, I'm really full of extra valves or something.  Avery was a similar puzzle when they tried to get her PICC line in.  Any tips on how to communicate this situation more effectively with my caregivers?  I'd appreciate it!

Enough of that, here are some updates on Avery! (Let's face it, that's what you're here for and I don't blame you!)


That's her IV pump TURNED OFF!!  She is not receiving any IV medications, nutrition, or fluid anymore so her PICC Line is out and her IV pump is GONE and has been since Saturday!  She is getting all her feeds from her feeding tube and will be able to try a bottle this weekend!  She has stayed on her nasal canulla and is getting a medium flow of air but she is doing great with it.  She's also gained back the weight she lost initially after birth and has now exceeded her birth weight tipping the scales at a whopping 4lbs5.5oz as of today.

Avery Hope, 13 days old
She's so alert after our Kangaroo time and we are so happy for the progress she is making.  We still have a long road ahead but our precious girl is doing beautifully!  Thank you so much for your continued prayers and support!

25 comments:

  1. Will keep praying for you dear. You are doing AMAZING. Thank you for taking your precious time to update us! Hugs!

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  2. Nella getting a port would be Sooooo much easier on you rather than them trying to find you vein every time. I AM so glad that you are both doing so well!! I will continue to pray as always!!

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    1. Thanks Michelle, for the prayers and the advice!

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  3. Prayers for you Nella and precious Avery. I'll send this to Emily. She has a port and maybe that would be easier. Hugs!

    Anna

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  4. BABY! She looks like Anna. :)

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  5. I understand your fear of the kids pulling on the PICC. But what if you got a really tight garment to wear over that arm? Steve has these arm sleeves from under armor to cover his tattoos that are very snug that might work. If the line and clave were covered completely the kids would have nothing to grab onto. Valves are tricky but sometimes you can feel them before inserting the IV and pick another spot. Maybe tell them you are extra valve-alicious before they start. Hugs for you both :)

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    1. I knew you'd have some advice! Hope you're feeling good and I'll definitely be asking about the PICC with sleeves at my lab check Wednesday. xoxo

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  6. Thanks for the update on both of you. Avery does look like Anna - another beauty!!

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  7. Good luck with those veins! I agree would second the advice from Kate- perhaps a PICC with a tight fitting long-sleeve exercise shirt (if you have AC!) Don't be afraid to tell your nurses ahead of time that you insist on trying/not trying certain spots that you know work/don't work and that under other circumstances you would be a candidate for a medi-port/PICC. A good nurse should (hopefully!) know that usually the patient is the expert!
    Avery is just beautiful! Congratulations on all the progress she is making!

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    1. Thank you! I'll definitely be asking about the PICC line and you're right about the nurses, the great ones make everything so much more bearable and the not as awesome ones make you feel like apologizing for needing healthcare. Luckily the vast majority of nurses we've had have been so wonderful.

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  8. Oh, she is just awesome. So beautiful. Praying these next sessions go easy on you. We're here for whatever you may need!

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  9. Oh my gosh, what good news about your baby girl! I just want to scoop her up and bring her home. Not that you'd let me. You just keep doing what the doctors tell you and know we are all here praying for you. I'll be offering up my morning sickness for the two of you.

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    1. How about some day your could scoop her up but just not take her home? Thank you so much for your prayers and wow, morning sickness? Thank you. so. much.

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  10. Nella, I jump to your blog when reading my niece Theresa's Ordinary Lovely... I have followed you for months and will continue to follow AND PRAY!!! Congratulations to you and your family on your new addition Avery...God Bless !! Aunt Claire

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    1. Thank you and nice to meet you Aunt Claire. I appreciate you stopping by and most especially I appreciate your prayers!

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  11. Payers and Love for you both. She's so beautiful :)



    - Jade

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  12. A PICC or a mid-line (catheter goes in the same place but is shorter) really is probably your best bet. I have had both while caring for lots of kids and the only time it got pulled was when *I* got it caught on a chair and ripped it out. I slapped a dressing on, went to the hospital and they stitched it back in.
    There are nice snug knit covers available to go over the whole package, not all THAT much is left hanging out. If you wear a sleeve, some women just use a cut up tube sock and long sleeves it is highly unlikely that the kids will yank your line out.

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    1. P.S I've never had chemo but have hyperemesis and have dealt with long term IV therapy and infusion pumps and such. What is going in is totally different but the mechanics are the same.
      I can give you dissertation on any anti-emetics they are giving you too :D Zofran and I have a long, rocky relationship.

      Take care, cancer sucks, but you've got this and your little one is amazing, just like her momma

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