GI Update: Kali will keep her tube despite Hematology not wanting it in anymore. She does not meet the requirements to graduate from that quite yet. They upped her Omeprazole (Prevacide) to two times a day to see if this will help her throat and if there is no change in her intake in 2-3 wks, they would like to do an Endoscopy to see if the acid is causing damage. We will be adding a 1-2 tablespoons of chocolate syrup or powder to her formula to see if there is anymore interest in it. They will be shortening the length of her tube since it sticks out so far. It will go from a 2.0 down to a 1.7 cm. We also got a prescription for a Mini tube (g-tube that will sit flatter to her stomach). They will also be running labs to check her vitamin levels since that has not been done for over a year. Hematology: Bone marrow biopsy showed no changes thankfully! They are sending some things out just to make sure and we will have those results in 2-3 wks. They will be doing labs just to make sure everything looks great. She did get her injection today. Urology: Things are starting to look up and we may get to go home tomorrow! Fingers, toes and anything that can be crossed, are most definitely crossed! She has more urine coming from her right kidney vs her bladder but still good. Kali: She is doing pretty good despite it all. She ate some ice chips (2 cups worth) and has been on a slow, continuous feed and has held it down. She has gagged a few times but nothing has come up! Her oxygen levels still seem to dip into the mid 70s-mid 80s while crying and her pulse seems to take a big leap to mid 180s-mid 190s. At rest she is about 120s-150s. Today we received a couple totes from Fionas Hope Totes! They are honestly filled with everything you need and then some! Plus Kali had a blast going through hers and finding all of the cool toys, coloring book, crayons, pjs, bracelets and so on. So awesome! A friend of mine ended up finding this for us! I will be sharing Fionas Hope Totes here in a few moments so you can all read her heartwarming story! She was a beautiful 19 month old when she gained her angel wings. Last but not least Pulmonary: We will be seeing them before we (hopefully) leave tomorrow. The staff here at the Childrens Hospital have been trying all day to get in touch with them but havent yet.
Posted on: Tue, 19 Aug 2014 23:26:55 +0000
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