So here is an update on how Aubrey is doing, I know it is long, since I am a little behind on posts. We went to see the pulminologist on Tuesday to have a recheck. He just laughed again, because Aubrey doesn't follow the book on anything! He said that he could still hear some "goop" in her right upper and middle lung. 4 days of mucomyst at home should have been enough...sigh...but they weren't. We have moved to a SYMPTOM schedule instead of a DAYS schedule. Meaning we will do the mucomyst nebulizers until she stops coughing during the treatment. He feels that once she is able to get over that part and get all the goop out, she will be able to completely come off of the oxygen. We have successfully been able to wean her during the days, but continue to use it at night (if she keeps it on) and whenever we are away from the house.
We will still have to keep her pretty isolated until she has fully recovered, but will just have to be SUPER GERMAPHOBIC after that. She will keep doing at least two nebulizer treatments through out the season. But mostly it will be just keeping tabs on how she does. We will keep the oxygen for at least two weeks after she is done with it, since she doesn't follow the book and may relapse. We will keep the pulse/oxygen monitor for a couple months, to do frequent checks. It could be that her oxygen levels dropping is her sign that she is sick versus a runny nose or cough. So we will try it, but won't really know until she gets sick again, but hopefully it will enable us to catch her cold earlier and avoid hospital stays. If that is her sign, we will likely keep the machine.
He ordered another chest x-ray, just to keep tabs on her since she is not a "typical-follow the book" patient:) I had wanted to get pictures of this to show you what they do for her. They have this little table with a hole in the bottom and a bicycle seat for her. Then I hold her arms up and they have this plastic "tube" with hinges in the front and back and it goes around her and secures in the back. This keeps her still and positioned just right for a good x-ray. (She doesn't like it too much:) For her, they can actually tell how straight she was because of the ties they used internally during her surgery. It is kind of neat to see her x-rays.
She is doing well at home, though I think her sleeping habits are a therapists worst nightmare! But this is very typical for Aubrey asleep or awake:)
More sleeping flexability.
Here is Aubrey playing with some of her new equipment. The large tan thing is an oxygen compressor. Instead of having tanks, like in January, we have this and it compresses the oxygen in the air to deliver to her. It is pretty cool how it works, but I'm sure when all is said and done, we will need "white noise" in her room, because the machine is not really quiet.
She is facinated with herself in the mirror and loves talking to herself, though I think that she was confused at first with who this girl with the new face accessories was:)
We love the new cow jammies that Grandma Olson sent us this week...
but they were a little big and as you can see, between the big jammies and all the cords in her bed, she had some issues. (Quick take pictures...then save baby:)
Isn't it in the parent/baby handbook that you shouldn't even put blankets in their beds at night to keep them safe?!?! Kind of seems odd to then hook them up and hope they stay safe:)
Grandma Smith sent us some new leggings to keep us warm while we continue with all the cords.
As you can see, Aubrey goes with the flow and is just as content as she always was. She is such a good patient and takes it all in stride. We are so thankful that she is home for Christmas and are thankful for all of the wonderful doctors who take care of her. We are very blessed in that department and appreciate all the love and care that they give to both Aubrey and us.
(as for the other girls: Ella finally got over the fevers on Sunday and we are just treating that nasty infection now, Kate's pinkeye is cleared up...but she gave it to Alice and Aubrey first! So now we just line them up in the morning for the eye drops and antibiotices!) We are hoping for a clean, healthy start to the new year!