Wednesday, October 26, 2011
October 25-26, 2011 - Day 24 & 25
4 months, 3 weeks since diagnosis
day #34 of current hospital stay
X-ray is clean. Cultures are clean. Riker continues to be a coughing faucet of mucus but it is not an infection. She is tired and sleeps a lot but her poor body has been though a lot and is healing. Overall, she's doing well. Her x-ray showed that she is retaining a lot of fluid still and that it is putting pressure on her lungs. I didn't need and x-ray to tell me that. She's still up over 2 lbs over what she should be. I know my baby. The good news is that her weight was down today. She was down over a quarter of an ounce from yesterday and over 6 ounces from her largest weight. We're headed in the right direction.
Today they went down on her morphine to begin the weaning process. She seemed to tolerate it well. They will keep her at this dose tomorrow and we will continue to monitor.
Still, the only major issue that remains is getting Riker to eat. She continues to show no interest in a bottle. I have my brother shipping me the sippy that I got for her but I have doubts that will help. I also have my breastfeeding support group looking into syringes and tubes which might just work since she has an obsession with her tubes. In the meantime, the doctors suggested I try to get her interested in solid food as an intro to food. Mind you, Riker has not had any solid foods to speak of. These are exciting times for us and I will try not to be discouraged when she does not enjoy/take the food. Counter intutively, they suggested puffs or teething cookies. The doctor said, "we encourage junk food on this floor." Typically, it's the only first foods they can get BMT patients to eat. Here's hoping.
I have a very ripe banana in my room so I tried rolling it in some crushed cheerios for her. I don't have spoons and I highly doubt she'd be receptive to them at this point. I am trying very hard to make this an enjoyable experience for her. I have heard horror stories of children so sick of the spoon coming at them they they refuse to eat for months. Thankfully, she did enjoy the experience. I don't know if she actually ate any of the banana but it's a start.
Later, I ran over to Whole Foods and picked up some other supplies - puffs and teething biscuits (the least I can do is get her the better ones with less ingredients), an avocado, some whole milk plain yogurt and some dreaded jars of baby food. I made all of Valentine's baby food and I intend to do the same for Riker. Unfortunately, that's just not practical here in the hospital. One jar of sweet potatoes won't hurt :) We'll be out of here shortly and I can make her baby food til my heart's content.
So, we'll see what tomorrow brings. We'll keep offering a bottle and try the sippy or even a regular cup. I will keep offering food both for her to self feed and on a spoon. I will do my best not to push any of these as not to create an aversion. This is the last threshold to overcome before we can leave the hospital. If I have missed anything I can try, ideas are welcome :)