Livvy had a really good afternoon and night last night. The GI doctor came down and we discussed her g-tube issues. He asked how we came to the conclusion that she wasn't tolerating her feeds. I told him that the nurses pull back fluid from the tube into a syringe and if it's "too much" then we stop feeds and start over. He said that doesn't work in pediatrics. He watches for vomiting, distention or bloating, and pain. Well, since they loosened the clamp on her g-tube, she's been pain free. She's had no vomiting. Her belly does expand when she gets food, but who's doesn't? So, I'm thinking we are going to be making some headway here! She is up to 20 ml an hour this morning and tolerating it well. The hope is to go up to 30 today and give her a while to adjust to that. Then to 40, etc... I think when she gets to 45 or 50, they will stop and try her on bolus feeds. If we can get her on this schedule, we would be halfway out the door!
I haven't heard anything from the cardiologist about her broviac placement. If it's not in a "comfortable" place, I believe that they will remove that one and put in a new one before we would go home.
Her platelets are holding their own at 29,000 and she hasn't had a transfusion since the day of surgery. Usually they would transfuse at this level, but she isn't symptomatic, so they'll wait.
She has been much more alert and happy, which is great to see. She did get to eat by mouth again yesterday - a half a Nutrigrain bar and some Cheerios. We are praying for one whole smooth day today. Keep you posted...
5 years ago
3 comments:
Sounds like Olivia's immediate medical problem is the lack of communication between her dr's & nurses. How frustrating.
K~
Glad things are improving!! Have you heard anymore from Dr. Al? Anymore thoughts on the platelet issue or are we going with the wait and see plan? Are Olivia's increasing need for platelets related to the 10% blasts found in her marrow?
Judy - as of yesterday, Dr. Al was very pleased with her platelet counts. He said if she was transfusion dependent, we would start chemo in a couple of weeks. If not, we would watch and wait. In a roundabout way, the blasts are related to the need for platelets, but only in the sense that it's all due to the pre-AML. It's confusing.
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