Today the hospital celebrated Halloween by having the children trick or treat around the different units. Child Life did a wonderful job coordinating this event and went out of their way to make it extra special for our little one and her brother and sisters. Megan and Jack were in school during the festivities; however, Sophie came with my mom to partake in some of the fun. Special treat bags were made for all, even for those who were in school. Lucy’s friend Abby and her mommy Beth came for a visit and trick or treated with us. Lucy went as her favorite sesame street character, Elmo. Tinkerbelle was our other option, but the costume hurt her “berry”. Sophie was the most beautiful “Punky Breusterish” purple fairy who kept complaining that her costume was too itchy. Abby too was a beautiful fairy.
We had PT and OT added to Lucy’s care while here at the hospital, more for something to do. At home we have therapy four days a week and attend music class one day during the week. Lucy has been very weak and has spent most of her days laying, leaning, or sitting, she has lost her ability to stand. It will come back, we just need to get her stronger and feeling better.
Today, and really all weekend, the plan is to try and go up in her feeding rate to see how much she can tolerate. I am sorry to say that it was not much. Every two to three hours we bumped up her feeding rate by one ml per hour, we started at five and we got to seven. Lucy woke during her nap retching and in pain. We shut her feeds off for an hour and restarted them back at 5ml/hr. This is the minimum rate we need to run her at to keep the walls of the intestines and bowels coated. We discussed the situation with the nutritionist and she and I shared a similar frustration about trying to get Lucy’s feeds increased, she said that mito kids are tough in that they can not handle very much in the the way of change. You really need to try and keep things status quo with their bodies.
We are having trouble with Lucy’s femoral line. One of the lumens, or ports of access, is leaking and is no longer able to be used. The other lumen is still working but we are holding our breath that this will hold until Monday when we need to schedule a line placement for Lucy. We have had trouble with her line all day, first with the patch leaking, then the site bleeding, then the lumen leaking, and now we are getting alarm bells every so often that are saying the line is occluded, meaning there is not flow going in the line. We redressed the site three times, which just opens up the risk of infection the more times you need to do this. Please pray that we can make it through the weekend with one lumen on this line. Lucy’s peripheral IV in her leg also stopped flushing today, so we are again worrying about access if we lose her femoral line. Lucy’s PPN can only be run through a central line, her PPN is her only source of nutrition for now. Ugh… if it’s not one thing it’s something else.