Listed – Weeks 1 & 2

Not much has happened over the past two weeks.  Our dog, Remy, ate an entire box of cookies, which put him into a food coma for 2 days.  Our other dog, Rudy, somehow got his lower canine embedded into his lower lip, which resulted in a trip to the vet.

Photo Oct 30, 8 00 12 PM

Definitely guilty.

Photo Nov 21, 4 11 22 PM

Get your hands out of my mouth!

Sleepy head.

I’m on drugs.

Anya’s mom and I spent Thanksgiving with Anya in her room.  Jocelyn and Patrick sent us Thanksgiving dinner in a box from Omaha Steaks (thanks for that!).  Becky, Lauren, Stephen, and Luke stopped by to say hi on Thanksgiving evening.

Photo Nov 27, 6 00 29 PM

Thanksgiving dinner

Photo Nov 27, 6 52 29 PM

sorry, i didn’t get Luke in the picture

Not much else has really happened since Anya got listed two weeks ago.  We’re just waiting for “the call” now.  As of November 28th, there is still only one other person with the blood type B and an LAS of greater than 50 in our donation service area, so Anya is most likely second in line right now.  She may even be first in line, depending on the size of the incoming lungs.

Anya is continuing to get stronger every day.  The occupational therapist comes in daily to do breathing and weight exercises for about 30 minutes.  The physical therapists take Anya on walks at least once a day, but usually twice a day.  Anya’s been doing great on her walks lately.  Yesterday, she walked 1,200 feet without stopping to rest.  It’s probably the best she’s done since we’ve been here at Kindred.  She walks anywhere from 900 feet to 2,500 feet daily, the length of 3 to 8.5 football fields.  Post-transplant success is directly related to physical strength pre-transplant, so that’s why every doctor has been stressing the importance of exercising daily.

Anya’s weight has been steadily increasing too.  She weighed 84 pounds yesterday.  Last week, she was 88 pounds, but we knew that something was off because she was putting on a lot of weight, quickly, so we told the doctors and they prescribed a diuretic (Lasix) to help reduce some of the water weight.  Her arms and legs were swelling a little bit.  We figure that her real weight is probably around 80-82 pounds, which is great considering where she was just a month ago.

Anya’s feeding tube twisted inside of her stomach last Wednesday, so the GI docs had to replace it.  This is the second time that it’s happened.  The first time, the entire tube came out, so they had to wait for the incision to heal before replacing it.  This time, the tube was still in place, so the docs just had to pull the old tube out and thread the new one back in, which was much less invasive and much less painful.  Unfortunately, Anya lost about 5 days of weight gain during that time because it happened the day before Thanksgiving and there were no doctors able to do the procedure until the following Monday.

Anya’s hemoglobin fell below the critical level (7.0) a few weeks ago.

“Hemoglobin (Hb or Hgb) is the protein in your red blood cells that carries oxygen. A low hemoglobin count is a below-average concentration of the oxygen-carrying hemoglobin proteins in your blood.”

— http://www.mayoclinic.org/symptoms/low-hemoglobin/basics/definition/sym-20050760

The low hemoglobin is most likely the result of the nutritional problems that we’ve been dealing with.  The doctors are giving Anya intravenous iron to help with the production of the red blood cells.  It’s going to take a few weeks, but hopefully it’ll help with the blood problems.  The doctor explained to us that her levels are not at a “severe” level yet because she’s been hovering around 6.8 to 7.5 depending on how they draw the blood, but he wanted to see what they could do before it got to a bad level (below 6.0).  The alternative would be to have a blood infusion, but the problem with that is that antibodies could build up causing post-transplant rejection problems, which is something the doctors want to avoid.  The doctors are keeping a close eye on it, but as of right now, it’s not a major concern.

That’s really about it for now.  Anya’s doing pretty good.  The good days seem to be way more frequent than the bad days now.  Being here at Kindred has really been the best thing for us.  I feel that Anya is the strongest that she’s been for the past 3 months.  Just waiting for a good set of lungs now…  I have a feeling that they will be coming soon…

3 thoughts on “Listed – Weeks 1 & 2

  1. June Deem says:

    S glad Anya is getting stronger! I will continue to pray! Marion looks great! Please let her know that I will lit more candles!

  2. Heather says:

    Glad to hear things are progressing. Love to see the pictures and getting the updates. You are always in my thoughts. Love you!

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