Day 3 has been a little rougher on Ruby. Thankfully, her body is handling the formula pretty well, her blood sugar is low (like it is supposed to be) and her body is producing ketones (which we want) but all of this has made Ruby very, very sedated and lethargic. For awhile this afternoon we could not get her to wake up; she was sleeping so hard that she slept through a half an hour of physical therapy and a blood draw! Finally we got her awake enough to take her next bottle and most of her medicine. I guess this is normal as her body adjust to the diet, but it is a little tough to see her so out of it. The doctors seem very glad that she is doing what she needs to do and they assured us that a lot of kids are lethargic at first and then after a couple of days they adjust. I am hoping that is true for Ruby.
Ruby saw an ear, nose and throat doctor this morning because she is a very noisy breather and we wanted to know what was going on. He put a scope down Ruby's nose/throat and saw that things look normal, but her trachea is fairly weak. Kids' larynx and trachea harden as they grow up, but Ruby's is still rather soft. He didn't seem too worried by this. He told us that hopefully as Ruby gets stronger she will grow out of this. It is nice to know that she is fine and her breathing is not dangerous, just noisy :)
Mark slept here last night and I slept at home and drove up early this morning so Mark could go to work. It was nice to sleep in my own bed. We are not sure who is going to sleep here tonight; we will have to see how the evening goes.
We are tired, but overall pleased with how things are going. We haven't seen much change in Ruby's seizures, but again, it is pretty early to be expecting any change. We were hoping to be home by tomorrow night, but one of the doctors said we might have to stay until Sat. A lot will depend on Ruby's blood sugar and ketone levels over the next day. If she has stable levels for 24 hours then we might be able to leave tomorrow....here's hoping.
Thanks again for your prayers and support. We will keep you posted.
3 comments:
I can see how you would be very tired! I pray that Ruby becomes more alert tomorrow and that you start to see a decrease in seizure activity soon. Still praying!
Glad to hear that everything seems to be very normal and expected (from the doctor's standpoint). Great news! Now we pray for precious Ruby to be more alert and get all those ketones stabilized (or whatever they need to be).
Praying for the health of all 4 of you, and for no seizures!
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