11/24/22

 When Taylor was in treatment I struggled with updates when things were bad… like how honest and raw do I get?  I didnt want to be too much, but I didn’t want to sound like a Pollyanna either.  Anyway, I’m dancing that line with this whole situation again.  I also don’t want to bash medical staff who are helping us, but I feel led to say a bit about yesterday and last night.  When we got admitted they put us on the oncology floor because of Taylor’s history.  The cancer team was communicating with the GI team and things took forever and got lost in translation, and I think very overlooked at times because the oncology nurses didn’t know what to do??  I’m not sure, but yesterday during the day, I feel like Taylor was taking a nose dive because of nurses and doctors not being on top of the situation, because of all of the above.  Again, I’m not bashing anyone, but we were frustrated.  Her doctor and nurse last night were truly an answer to prayer, the doctor came in and had blood and fluids ordered STAT, he had her blood pressure being checked every 15 min and her blood being checked routinely too… and he was just ON IT.  He was really worried and had our sweet nurse at Taylors side most of the night.  We voiced our need and want of the scope being done today (like why have her off fluids and food and bleeding for an extra day if she doesn’t need to be??), and he said he would be our advocate— and several hours later he had a scope for her ON thanksgiving afternoon, a holiday!  He also has a CT scan lined up if the scope doesn’t find anything.  I feel very much like he kept her out of a dire situation that was about to happen, by swooping in and getting her what she needed!  Our team this morning is wonderful, I think we are headed in the right direction!!  Taylor is feeling well enough to be very unhappy with her IVs— she was very out of it when they put the second one in last night, I don’t think she really knew what was happening.  She didn’t know she had it until she was rolling over later and saw it and said “What?! I have 2 of these?!” Not impressed.  Everytime she wakes up she complains and is mad at them.  Whenever she feels well enough to be mad, that’s a good sign 😂


Follow up comment 1 yr later 

I’m not going to continually share stuff from last year… but I did want to share that the night I’m talking about in this post, I felt like Taylor was slipping away.  I remember going into the bathroom and crying really hard because I felt like we were losing her.  The nurses on the day shift after we got to children’s mercy, weren’t ordering the blood that she was supposed to get, and they didn’t seem to take the dire situation seriously- until she had a bleed (HOURS after she was supposed to get her second infusion), which was about the time the doctor came in and set everything right- finally.  Anyway, rereading these posts has me 😭 that was such a scary and stressful time, and knowing what she would still go through over the next few months gives me a good bit if PTSD 😬

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