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One Month Gone Posted March 5, 2013 by Jackie Dooley

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It’s officially been a month since Ana’s transplant. A month! I feel like I’m stuck in some kind of space-time continuum. It just doesn’t seem possible that it’s been a month. If chronological time coincided with the significance of events in one’s life, then a year should’ve already gone by. Instead it feels like only a moment.

I don’t even know what the hell I meant by that.

So, good news first. Ana got her labs drawn at Dr. Denno’s office in New Paltz today by our favorite phlebotomist, Donna who informed me that she reads the blog and gave us three rolls of that non-adhesive dressing stuff that I raved about a couple of weeks ago. Turns out it’s called “cohesive bandages” or “tape” and comes in lots of pretty colors.

cohesive-bandage

Jim will bring a roll with him next time Ana pays a visit to the phlebotomist at Columbia. Oh wait – I almost forgot to tell you the good news. Her labs look good and her numbers are improving! They reduced the Prednisone again so now she’s down to 10 mg/day (she was originally taking 30 mg/day). This should help with her food cravings which include cheese, jelly beans and Chinese food. She’s also craving fruit – so there’s that. She REALLY wants a salad from Adam’s but we can’t let her have that yet. We’re also not letting her have Chinese food – too much sodium. She’s also been craving a super sweet candy called Topps Juicy Drop Pop  – specifically, the green apple flavor. I mean, obsessively craving it! After you drink the super-sweet liquified candy – you can remove the equally sweet lollipop from its hidden compartment and enjoy even more high fructose corn syrup.

droppop

Ana is feeling well except for being sluggish in the mornings, but I don’t know if that’s a normal “tween” thing or just some residual fatigue from surgery and recovery. Feel free to weigh in on this if you have an 11 or 12 year old. I mean, Ana’s never LOVED mornings, but she’s also never had to drag herself out of bed quite so reluctantly only to sit in a corner grumpily for thirty minutes. I was really tempted to give her a cup of coffee this morning.

But once she woke up, she was fine. Well, after she had her blood drawn she was fine. My lingering concern is that her stomach is still protruding somewhat which means there is some ascites still in there. She is also gradually going up in weight each day and is back up to about 66 pounds (she was 62 six days ago). She did have a very sharp drop in weight last week from about 65 to 62 pounds when she was on potent diuretics, so I’m wondering if some of that is just normal fluid retention. Still, I’m concerned. I emailed Dr. Martinez and Maria about it so they are both aware, and I’ll just keep weighing her each day.

We got outside today for a nice walk around the block.

shadows

Ana was extremely energetic. She rode her scooter while I shuffled after her like an old woman. If only I’d had my bike! It was in the shop today though, so I basically just ran after her screaming at her to be careful.

scooter

Tomorrow we have a big moment planned – I’m taking her to get her first haircut since that awful day when all of her hair fell out.

4 Comments

  • Mary-Ann and Natasha March 6, 2013 at 8:04 pm

    Hi Jackie, Ana, Jim and Emily. So glad that things are going better – is it really a month already? Wow. It sounds as though you are getting our and about a little now and I am sure that this will help Ana’s sluggishness. There is nothing less motivating than having nothing to do I find and I wonder if this is contributing to the sluggishness – hopefully this is not related to her recovery. Anyway, goal directed activities are so hard to come by when you can’t go anywhere really, cannot last too long when you do go somewhere etc. I wonder if Ana will be as sluggish when she gets up for the planned outing to the hair dresser tomorrow. Slow rising does seem to be a problem for us in our house though as well. Anyway, speak to you soon and have a good night, Mary-Ann

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  • Judy March 6, 2013 at 10:35 am

    I can’t believe it’s been a month! It was wonderful sitting and drawing with her on Sunday … Looking forward o pics of that haircut! I love you …

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  • Arielle Curtin March 6, 2013 at 8:49 am

    Just want to let you know that my husband had a heart transplant and it is now close to seven years ago. True recuperation was a multi-year process but kudos to Ana for getting through the hardest part. Now look forward to getting really well. Courage and Congratulations!

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  • Kelly March 5, 2013 at 11:20 pm

    Such great news her numbers are improving. Yay Ana! And it’s worth adding, sluggish mornings are now normal with our 12 year old tween. It has just started in the last month, Cleo has also never loved mornings but lately it’s been a struggle to get her out of bed and then once she is up she’s a grump for 20-30 minutes. This morning she moped to the table and just sat with her head in her hands. If we tried to ask her a question she’d dramatically say “Can you PLEASE just give me five minutes.” And just this morning I said to Ian, “I wonder when can we start giving her coffee?” ;-) Here’s to another healing month… and I hope Ana can get her candy fix soon!

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