Having Lucy home has been wonderful but has also been extremely stressful. Lucy is now on oxygen in addition to a feeding tube the runs 22 hours a day. I hate having her tethered. The worst part about the oxygen is that it keeps us from going anywhere. She needs so much that she runs through a tank really fast. At home she using a compressor that is battery powered but when we leave she needs the tanks. We took her to the pediatrician the other day and during the appointment Chuck had to run out to the car to get the back-up tank we'd brought. I guess the thing that's really the worst about the oxygen is how dependent she is on it. If it slips off her nose she desats really fast and her oxygen sats are really low, worse than they were when we got to the ER two months ago. She wears an oximeter at night that alarms if she drops below 85%. The first night she was home the alarms probably went off a dozen times. Chuck and I now split the night sleeping outside of the girl's room, waiting for the alarm to go off. It's getting easier. Lucy is getting more used to it at home too. This was only her home for three weeks before she was admitted to the hospital. We are anxiously waiting to hear from cardiology to see if Stanford had approved the insurance. We have an appointment with Lucy's cardiologist on Tuesday. We're really hoping we'll be going to Stanford sometime next week. Sometimes I'm horrified at how things are turning out but most of the time I just feel really grateful that we've been allowed to keep fighting for Lucy.
3 comments:
Yay! Glad she came home!! I totally remember the oxygen days for Whitney, that oximeter would always beep at night and I could hardly sleep without thinking about her desating or getting all tangle up in the three lines/tubes. How many liters is Lucy on? Whitney was on 1/4 L and sometimes 1/2 L. flow. Hopeing the feeds are going well and praying for Lucy. Sorry you have to deal with all this but like you said, very grateful! I hope you have lots of support.
Alicia, I remember reading you're blog and feeling so grateful we didn't have to do oxygen. I guess I should've known. Lucy is on 1 1/2 to 2 liters. I hate it because she goes through a tank so fast. I hope you continue to update news about Whitney. I feel like I know that little girl.
Look into the availability of liquid oxygen tanks. Sooo much quieter, more reliable, cooler, less electricity, than the compressor and no worries in a power outage. Also, the portable unit that comes with the liquid tank (you fill it from the main tank) holds a lot more than the green portable. At six liters, my mom was able to get three hours on the portable, and the main tank lasted a full week. All in all, a better home solution.
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