December 24, 2002
There was some positive news today, as I got to hold Nick for the first time. He's been doing really well the past few days, so they moved him to his very own Isolette incubator. It was my job to move him into his new temporary home, while the nurses concentrated on all of his lines. He's still under 2 pounds, so it wasn't much of a strain on my arms! I'll post photos of the move when I get a chance.
Andrea will be getting out of the hospital tomorrow for Christmas Eve. Her abscess is still being drained, but they should be able to remove the drain before she comes home. She'll need to stay on bedrest for awhile, as well as receive IV antibiotics while she's home. I never thought I'd have to worry about hanging IVs at home for Andrea too!
It's going to be a crazy few
weeks with Nick still in the hospital, Andrea on bedrest and Alex
starting chemo again. Andrea's parents will be here until the 26th, but
after that I'm on my own for awhile. I really think it's time to hire
some help, but I don't think our insurance will cover it!
|Sunday, December 22, 2002|
Andrea got to hold Nicholas for the first time today and she was just a little happy about that!
December 21, 2002
Yesterday was Nicholas' One Week Birthday and things continue to go well. He is slowly being weaned off the ventilator (the pressure is down to 42), but it could still be quite a long time before he's completely off of it. Everything else is going as well as can be expected. He remains on TPN (IV nutrition), but they're going to start feeding him breast milk tomorrow. He's up to 1 pound 13.2 ounces, which is an increase of 4.2 ounces since birth.
We were allowed to bring a CD player into Nick's room today, so Nicolette Larson's "Sleep Baby Sleep" CD is playing 24x7. Right now it's very important that Nick remain asleep as much as possible. If he's too active, he'll burn calories and not gain weight. We used this CD to calm Alex when she was going through her initial Leukemia treatments and later during her transplant. Hopefully it will have the same calming effect on Nick.
We did get some good news about Andrea's continuing fevers today. A CT scan revealed that they are being caused by an abscess in her abdomen. They're going to drain the abscess tomorrow, which should take care of the problem. With any luck she'll be able to go home by Christmas Eve. It will be nice to have most of family home for Christmas, but I won't feel whole again until Nick is home with us.
Alex is doing pretty good, but her ANC dropped from 1300 to 365 in four days. It could be that the GCSF injections were giving us a false high or it could be that yet another relapse is on the way. Her other counts are still in good shape and the preliminary results of her bone marrow aspirate showed no sign of leukemia. We should have the final results of the bone marrow aspirate in a few days. We'll also do another blood draw on Monday to see if ANC bounces back up. Even if everything looks good we will probably begin maintenance Mylotarg next week, followed by GCSF to boost her immune system.
It appears highly unlikely that Nicholas will be out of the hospital until at least March, so we're looking into the possibility of doing Alex's Cord Blood Transplant at Children's San Diego. One of us would stay up here with Nicholas and one of us would go down to San Diego with Alex. We still have to work out all of the details, but San Diego would be a lot easier to handle than Duke right now. Most of Andrea's family is in Southern California and we have lots of friends down there who could help out. Plus San Diego is a two hour flight, while Duke is at least a five hour flight. Not crazy about the idea of splitting up the family, but we may not have a choice.
have a special request this week. Alex managed to collect 5 of the 8 pieces
to complete the McDonald's Treasure Planet globe. Unfortunately McDonald's
ended the Treasure Planet promotion this week. If any of you have extra
copies of the three pieces that we're missing, please let me know. I've
marked the pieces we're missing on the above graphic. It's not a big deal,
but just once I'd like her to be able to have a complete set of one of these
It won't make up for her having to miss Treasure Island (her ANC is too
low), but she'll still get a kick out of it.
...and everyone else who has
sent gifts, cards, gift certificates, gas cards, phone cards, checks,
letters, stickers, etc... over the past four years. I wish I could thank all
of you in person, but we would need a really large room to hold all of the
people who have helped us. You've all helped to make an unbearable
situation, a lot more bearable!
Hopefully someday we can rent a hall and have a big party to celebrate Alex
and Nick beating the odds.
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