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Sunday, February 8, 2009

Today's update--no better, but no worse

Today went okay. Kyle isn’t getting better, but he isn’t getting worse. He started the day off in high spirits. We borrowed toys from the play room and he had fun sitting in his Boppy and playing with them. His fever is pretty high, when he has one, though, and he has phases throughout the day when he feels icky. But he still doesn’t require an IV, which is great news, and he hasn’t required oxygen since early this morning. And we found out that he can order unlimited ice cream cups, so he’s been enjoying that!

Lauren, too, isn’t getting better but isn’t getting any worse, either. She is struggling to keep herself oxygenated still, and she spends most of the day sleeping with her bipap machine or getting her chest percussion/Cough Assist treatments. The great news is that she hasn’t had a fever in about 48 hours, so maybe just maybe the very worst is over. She still has lots of gunk in her lungs, though. I would venture to say that she probably has four more days to spend here. Maybe just two days, if we have all of this equipment delivered to our house in time.

Lauren hates getting her treatments from the respiratory therapists. Every three hours, they spend 45 minutes beating her lungs with the chest percussion, doing 5-7 rounds on the Cough Assist, and then deep suctioning the secretions. She now knows who the RT’s are and the minute she spies them in the room, she cries, “No, no, all done, all done!” It was funny the first time, and then just sad. She’s such a sweetie. Kyle has started some Cough Assist therapy, too, and he has tolerated it so far surprisingly well.

Right at this minute, Kyle is feeling cruddy in his bed. He’s watching his Ocean Wonders aquarium fishies that we attached to his bed rail, grasping the ribbon of his Pooh bear balloon tightly and trying to take a nap while he waits for his fever to go back down (he was just given some Tylenol). Lauren is sitting here next to me in her bed, wearing her new (and joyously smaller!) bipap mask while she plays with some blocks and books and watches Stuart Little. Her eyes are shining and bright and her color is good. Sort of the opposite of Kyle right now, but these roles have been reversed all day, so it was about time that the girl got some happy time.

Chris was supposed to start his new job tomorrow, so we hope that they’ll allow him to defer one week without firing him before he starts. Like he needs the added stress of starting a new job amid all this drama at home! What timing. Oh well.

More updates tomorrow.


  1. We've been thinking about all of you. Thanks for the update.

  2. My heart goes out to you. I can't imagine having two SMA kiddos sick at the same time. Sounds like you're doing a great job of being the mommy bear for your two little cubs. Our prayers are with you.

  3. BIG HUGS Cass. I hope you're all feeling better ASAP!

    I teared up at Lauren's reaction to the nurses. A year ago when Dot was in the hospital also with RSV was the week she learned to shake her head no no no! She didn't like the chest percussions either.

    HUGS honey, wish I could make it all better

  4. I"m sorry that they aren't feeling better but happy to hear that Lauren isn't getting worse and happier still that the fever has stayed away. THAT looks promising.

    Poor baby girl.

    You hang in there Cass. I"m thinking of you and sending you lots of love and well wishes and energy.

  5. Yikes!! I just saw your Twitter! Two more weeks??!! I know you're short on time, but seriously, let me know what you need and I'll try help out as I can! ((HUGS))

  6. Julie, we could really use a to-scale cake of Hogwart's. Delivered across country, in person. Can I sign you up? ;)

  7. LOL! To scale? Well, you have to remember I'm an actor by trade and therefore too pretty to do math. I'd be able to try though! :) How's next year as a timetable?