I was able to get Kiley out of her room and up on her feet for a little bit by letting her have a bag of candy (thanks Kylie and Allie!) that she wanted to use to hand out candy to all the nurses. She looks so cute in her bunny robe going up and down the halls finding all the nurses. She was adamant about making sure she did not forget anyone. Today is a jam-packed 24 hours... Starting with a platelet transfusion last night, a blood transfusion right now, skin care regimen 2-3x each day including wash and cream on burns, IV Benedryl every 4 hours, (she still stays wide awake tho!), then we need to de-access her port and then re-access it again, (the needle in the port needs to be changed at least 1x/week to avoid infections). But before we re-access her, the plan is to TRY and give her a bath if she can tolerate it with her skin. I ended up having to take a shower here yesterday, and believe it or not, I actually did feel a little better after! Desperate times really do call for desperate measures I guess, lol. So Im hopeful Kiley may feel a little better after getting clean too. The last thing that we are debating doing is putting her on a 24hr pain control option where she just pushed a button if she needs it. Ive been fighting giving her this much because I dont love the crazy side-effects it gives her, (itchiness, angry, sweating, etc.), but not sure it outweighs when shes in pain and a mad rush ensues to get her the pain meds asap. Obviously our goal is to keep her as comfortable as possible. I will say proudly that Kiley is becoming a very good advocate for herself... The things she says are pretty funny because its not everyday you hear a five year old tell a nurse please tell me before you flush my line with saline because I dont like how it tastes so I like to hold my nose., or are you going to my night nurse or PCA?, and then,could you please come back later to take my vitals because now is not a good time. :) Lastly- thank you to everyone for your kind words in response to my rough night- but please know that while I am sharing this experience with you, I am not looking for sympathy in any way. When push comes to shove, each and every one of you reading this would do the exact same thing Im doing, which is doing whatever needs to be done to help your children. That being said, all of your support is so appreciated, because in this situation it makes that saying, it takes a village, so much more than another cliché. :)
Posted on: Wed, 05 Nov 2014 19:14:48 +0000
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