ISOLATION: The pathway to your own room!

Chloe and her friend Max the night before he left KKI.

About two nights ago, Chloe spiked a low grade fever. This is a red flag in a pediatric unit. RSV, the virus we tried to keep Chloe getting for as long as possible from the moment she was home from the NICU, can be deadly in a place like this, with so many vulnerable children. The moment they found she was running a  fever, a protocol broke out in the form I have only seen in the movies such as, "Contagion" or "Outbreak". People only talk to us now wearing yellow paper ropes and masks. Chloe can no longer leave the room, everyone now comes to our room to perform therapy, we don't leave. They quickly moved Cody (our roommate) and his parents out of the room. Luckily, so far RSV tests have come back negative, as every other test performed on her, all the flu's and whatever else they have tests for. It looks like what she has is a cold or some sort of sinus infection. We have kept Chloe as isolated as possible so far in her life, to keep her from getting sick and to keep her lungs healthy. All of a sudden, she is being exposed to quite a lot being here. Playing with other kids, playing with other kid's toys, living in a room with another kid, it is just inevitable. Now that she is a little bigger, a little stronger, getting colds are not such a huge deal, and while it is still a littler earlier than I, or some of her doctors wanted to start exposing her, it just is what it is. It is interesting being here, there are a few kids are here because they caught various illnesses while a baby or toddler.  Meningitis, or other viruses which caused an autoimmune response and caused disability or paralyzed the kids. It is enough to make someone paranoid. Regular full term, healthy kids that caught random illnesses that had a serious impact. How I will get through the experience of having and raising Chloe, and all that I have learned, and not becoming OCD will be a nothing short of a miracle.  But Chloe does seem to be recovering pretty well. About an hour after getting the fever it went away, and by the morning she was up playing, laughing, and causing trouble. Fighting a cold for sure, runny nose and lethargic, but it is letting her do some of her favorite things, such as getting salt spray in her nose and then getting snot sucked out with the little nose vacuum. Yeah, no joke, she actually enjoys this, holds quite still while it is happening and after her turn, she in turn sucks snot out from Penguin, Elephant and Duck. (These are the names of her stuffed animals, I bet you can't guess who is who...) So anyway, poor Chloe and her fever, while I never have wished it on the sweet girl, has turned our closet, submarine of a room to a master sweet. Well, and also, Cody and his parents get a room twice our size all to themselves. Now that I am probably a runner up for horrible mother of the year for actually thinking we struck the lottery because we now have a private room. It has been a treat because you don't realize how much added worry is added to your day when you are worried about being too loud, too bothersome, or not giving your roommate enough space, until all of a sudden you don't have to worry about those things! At least Chloe can sleep when she wants and have the room quiet so she can recover! She has been adjusting and hasn't gotten too stir crazy yet staying in one place. She has managed to keep her self occupied moving the furniture all over the room. One of her favorite pastimes is rearranging furniture. All the attention from Nana and Money (her name for me, hummmm...)make it tolerable in the room. And after her week of attention and playing with Dada, Nana and Money will have to do!
We had a great visit from Dada for about a week over Thanksgiving, it was wonderful. Evan loved finally seeing what was going down here, and loved seeing her be goofy and interacting with other kids. He stayed at the hospital with Chloe and let me sleep at the RMH, which was, about the best gift. Evan thinks she has to be one of the funniest kids, and his words, "I watched all of those kids, she is for sure the funniest." :)It might be because she loves wearing the purple, sterile gloves that the doctors wear for half the day, or checking every one's pulse with the stethoscope, or chases Mason in hopes to catch him and hug him, yeah any of those behaviors about does it.
We have gotten in our routine, and Chloe is still doing awesome. Talking with the nutritionist today, taking Chloe's height to weight ratio is in the fiftieth percentile. Which means, she is getting enough nutrition to grow. Not looking at growth charts with adjusted and actual age, just knowing that with her height right now, her weight is great! What a relief! We are managing to do this without the feeding tube right now which is huge!
I love that they introduce new food to Chloe everyday. So far, she is pretty accepting of all food, so it kinda proves this isn't about finding a "food she likes". She likes everything as of right now! Of course, hoping she moves out of the pureed everything such as pizza, grilled cheese, black beans and cheese, pancakes, creamed spinach, broccoli and cheese and then it will be even better!
A little sad we have lost a couple of friends who graduated from the program. These kids were around Chloe's age and they played really awesome together. They left the program happy, which is great news from our end! Many of the kids coming in are older, so we have lost a couple playmates, but it won't make much of a difference anyway until we get out of isolation! We are over half way done and feeling good!