I sit here wide awake as Lilly is getting her sleep study done... What better time to do an updated blog post, right? A pulmonologist came and evaluated Lilly today and decided that a sleep study was needed to determine why she's having sudden drops in her oxygen saturation levels. Hopefully they'll be able to determine a cause and we can fix the problem so we can go HOME! I have a feeling it's going to be a L-O-N-G night. Lilly is going stir crazy. (I am too). Because Lilly's ANC is zero, she can't leave her room. It's hard to stay in one place all day, every day. But, we haven't had to have a blood or platelet transfusion in the past two days, so that's great. Lilly's doctors gave her the ok to eat food again, but she still has no appetite. They've started her on an apptetite stimulant, so hopefully she'll start to get hungry soon. Today she had a tiny interest in food. She had a few bites of fruit for breakfast, and a half of a grilled cheese sandwich for lunch... That's huge for her lately. Unfortunately, she got some pretty severe stomach pains after her grilled cheese sandwich. I'm assuming it's because of her gallbladder issues. That thing has gotta come out. I'm afraid stomach pains after eating is going to get really old really fast! Plus, Lilly isn't a very good eater. Carbs and candy and breads and fatty foods are what she craves - that's not a good combo for an angry gallbladder. She's also being treated for a yeast infection, and she doesn't have C-diff! HALLELUJAH! I'm definitely happy about that! Lilly has already had cdiff twice since diagnosis, we don't need it again. Lilly was "suppose" to start Long Term Maintenance today, but she didn't make counts and she's been extra sick so it's going to have to wait. I secretly hope she doesn't make counts next week either because she needs a break. Too many things have gone wrong lately. She is so sensitive to everything... Just like Dr. Doug says - Lilly is a delicate flower! It's the truth!
There is no way I would be able to sleep with all of this equipment on my head and face. But Lilly is... She's such a trooper. And most of the time she does it with a smile on her face! She's gone through so much this week... Chest X-ray, abdomen X-ray, abdomen ultrasound, 5 blood transfusions, 6 platelet transfusions, echocardiogram, ER visits, sleep studies... All of that in one week! We need a break! Thank you all for your love and concern. We can feel your prayers and we know there are angels on the other side helping Lilly along the way. We have felt them too.
My heart goes out to ALL of you!! I know all of these set backs are hard..... hang in there!!
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