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!
First, let me say what an awesome patient Chloe is. I mean it is a bit ridiculous. Is it because she has been so used to being a patient in her short life (which is a sad thought, but maybe true...) or is it because she is so darn easy going? There is this vet kit my parents have at the house, and Chloe over and over again wants me to take her blood pressure, check her ears, check her reflexes... so you can imagine how much she loves being in the hospital right now. This gets done at least twice a day. Most kids in this program have to go through part of their therapy using the play doctor items to releave the anxiety for things as simple as getting their blood pressure taken. Nooo, not Chloe, she signs more after the nurse is done. Oh, and don't even get her near a hospital scale, the one she can step on to get her weight, exciting stuff let me tell you. Wish I felt that way every time I passed a scale, eager to jump on, hold on and wait for the digital number to pop up. So, my daughter loves being a patient, which I guess at this point, is a good thing!
At least being here has given me a break from feeding her (other than bottles), which is nice, I get to step back from the fight and take my gloves off. I fed her her first 3 meals, then the therapist have taken over from there. I don't even get to sit in the room, I am off in an observation room watching the action. For those of you interested in psychology, especially behavior psychology this is the place to see it in action. I can't help going back to my short stint as a dolphin trainer and now watching Chloe in that room I am hearing dolphin squeaks in my mind. Using the same psychology they use to train dolphins. The first two weeks are supposed to be assessments, assessments for toy preference, for eating preference, and more. Watching them hold a spoon in front of Chloe for a half an hour, and Chloe just staring at the wall or falling asleep. I can see how some parents are like, "What the___?". Which, I guess happens often. But all of this is gathering info for what the child refuses, how she refuses, what motivates her to eat, what motivates her not to eat to build the program that will help Chloe the most. So many kids with this problem, and so many variations of this problem. They ended all the data collection early and went straight to treatment because they weren't getting a lot of variations on their "graphs" because Chloe was so passive. I mean she would just refuse the food by turning away, staring them down, falling asleep, but no way was she gonna break! I knew I had observed this behavior in action...she for sure gets this behavior from her Dad!! :) Haha! (Slightly kidding my darling!) This determination of course has helped her in other areas in her life, but is not coming in handy at the moment.
Treatment has begun, they have introduced two new foods, so she is eating black beans with cheese, applesauce, pears, mac and cheese, carrots and green beans. And when I say eating, I really mean they are shoving it in the back of her mouth with a NUK brush. But she is not putting up much of a fight. At least she is swallowing, and not spitting out. She may gag on carrots and the green beans but is getting them down. She loves her therapists and is quite the flirt. With the way she is acting I think she thinks she is going to marry Kevin the therapist who feeds her half the time. She loves being with the other kids, there is time for her to play and interact with them and she is just a riot to watch. Tonight she was chasing and being chased by Max, a fellow patient who uses a walker. She would go hide behind the corner and jump out at him leaving him in giggle fits. Her and Max are quite the pair. Her obsession with spiders has continued and Max gave her two spider rings one night, sealing their friendship forever. She also loves playing cars and trains with Mason, and loves taking all of Cody's (our roommate) toys if she gets the chance. We get to play in the therapy garden when the weather is nice. And Chloe loves riding the buggy that fits all the kids so they can scoot them all over the building. She loves music therapy and one night we had music in the lobby and she kept rushing the stage. We have been able to get to the aquarium, where Chloe's favorite thing was the jellyfish, which she continually called spiders, but what the heck. They keep us quite busy day and night which is good.
The therapists, such as the OT, PT and Speech are amazing and amazing to watch. They basically solely work with kids and this problem so they know what they are doing and get right to it.
One thing I can say for sure, for sure is I AM SO GLAD WE DID NOT GET THAT FEEDING TUBE! Period, end of story, have my reasons and there are a few. Of course if she hadn't improved, we would have had to have gotten it, but thank goodness she improved and gained weight when she needed it. It adds a whole other set of problems for these kids and I think, makes this process even harder.
Tomorrow is the big meeting where we get to meet all the specialist working with her and find out the big plan, the goals, where we are and where we are going. Here's hoping Chloe will be cured by next week!
LASTLY, THANK GOODNESS FOR MY PARENTS!!! I would not have been able to get through this experience, even these two weeks and kept my sanity without them. They have driven us out here, given me breaks, a chance to get away from the hospital, helped me get us adjusted to the new schedule and been a great all around support. Chloe and I are so lucky to have them here. It is nice to know I can take breaks and she is with someone she loves (I would say probably more than Evan and I...)is comfortable with, and sees as a big playmate, which she does with my parents. It is true that I might have had to hold Nana down a few times from keeping her from running into the feeding room grabbing Chloe and getting as far away as possible from these mean, mean therapists... but we have all stuck in there. Thank you and I love you!
