A compilation of several updates

Lately I've been more faithful at posting to Lorelei's community facebook page: Loving Lorelei. Here is a compilation of the last few posts there. The most recent is listed first:

July 25: "Day +2; Lorelei's bone marrow is dead. Her counts are at zero. She sleeps most of the time right now. Nausea is mostly controlled but still she eats very little; she's too exhausted to lift the fork. The PICC line put in Tuesday is working well so she can sit/stand up without occlusion but the only time she gets up is to go to the bathroom. Expending that amount of energy would be equivalent to you or merunning a marathon. At this very moment she is expecting me to applaud because she managed to take off one of her shoes! Her short chemo-curled brown hair has yet to fall out. That should happen in 4 or 5 days. It's a long boring process from here. The ultimate goal is for Hannah's stem cells to find their way into Lorelei's "empty" bones and "engraft" to make new bone marrow. Until that happens Lorelei will be kept alive with blood transfusions."

July 23, 2:30pm: "Day 0; Beautiful life saving drops of Hannah flowing into Lorelei. Amazing to watch. And to think that Lorelei will now be able to say she's TWICE been saved by the blood of another!"

July 23, 9am: "Starting Transplant Day out with a procedure to place a new PICC line since Lorelei's CVC has been very positional and nobody wants Lorelei to have to lie in bed for 30 days straight. (Talk about muscle atrophy!) The transplant will happen at 2:30. The hospital chaplain offered to pray a blessing over the cells just prior to transplant. I said sure, why not? Those cells are probably already the most prayed for cells on the planet!"

July 21: "Day -2; Doing chemo like a boss! Got all four pumps running at once. Lorelei is feeling awful already and knows it's only going to get worse. I don't know how she does it."

6 comments (Add your own)

1. Leese wrote:
Continuing to pray for Lorelei (and then rest of you!)

Just a PICC type I wish someone had told me, Glad Press and Seal wrap is THE best stuff for covering a PICC to shower or whatever.

I put the stretchy sleeve thing on it, as always, to keep the extensions from just dangling around. Then I used a piece or two of paper towel, sort of above and below where the sleeve was...just in case to help keep things dry. Then I used the Glad Press and Seal.

I NEVER ended up with any moisture underneath, and although it was a little hard to do at first (since I was having to wrap it alone) it was seriously like a 'miracle' fix/trick. I'd get a sufficiently big piece of the Glad P&S and lay it on the bed or some other flat surface, lay out the paper towel on it so it hit the right (above/below the sleeve) spot, and then rolled my arm up in the P&S. I always tried to leave it looser in the middle, though making sure it still was well "stuck" to itself there in the middle. The edges of the P&S I'd make extra tight.

Using the bags with foam tape that they had me using in the hospital really ended up with my arm seeming like it it was stuck in a bag full of water for a goldfish you win at a fair. Ha ha. I also found the way I was doing it worked better than the cast cover type things that are sold in drugstores, etc. I used that once and never again!

Also, I made myself some 'nicer' wraps using fabric and velcro on one edge and did the 'prickly' side in a row actually on the more middle part of the wrap, with the strips going long ways as in parallel to the longer edge of the fabric wrap. That made it more adjustable.

I only used it when I went out and did it just b/c I felt like it attracted less attention than using the white stretchy sleeve things you get otherwise. I did three or four in the colours I wear most (like a black and grey one that looked like sweater material, one in a dark grey velvet (for dressier things) one in a deep red (both b/c I wear it but also b/c it was near Christmas when I got the PICC so I figured it was sort of 'festive')

I got nice comments ALL the time. When I'd go in for infusions (coming from home) nurses and other patients would ask about them and said I should sell them.

If you've got sewing skilled friends, it could be a fun thing to 'cheer up' (and disguise) the PICC more. They didn't take long at all and really didn't require much sewing (some fabrics need it on the edges in they are ones prone to fray). The one place I DID sew well was over the velcro...using them much caused it to pull up eventually otherwise. I'd have to measure, but I think my covers were about 8 inches wide and 20 ish long. I could send a picture if it'd be helpful to see and/or if you've got someone who wants to make some.

Anyway, really just wanted to say I was praying, but also include my two little so-wish-someone-had-suggested-these-to-me tips!

Fri, July 26, 2013 @ 1:12 AM

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Psalm 91:14-16

New International Version (NIV)

14 “Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.
16 With long life I will satisfy him and show him my salvation."