My daughter, Haylee Kate, was diagnosed with APML Leukemia, which is a rare form, on November 21, 2011 at 8 years old. I thought this would be a good way for me to get my thoughts and feelings out and to let others know about her ups and downs throughout her treatment.

February 25, 2012

2/24/12 - She's so bored :( **new update**

She was up early this morning and I was woke up to the sound of her talking to someone - the 2 day nurses.  She was just sitting there carrying on a conversation with them like she's known them forever!  After she had breakfast, she went down to school and finished up her schoolwork from this week.  My mom and Adam were there early and walked down with me to get her.  We all went and had lunch then Adam had to go back to work.  My mom and I went back upstairs...and just sat.  There wasn't much of anything going on in the Hospital Happenings but the 1 thing that was going on wasn't until 2pm.  Bless her heart, she's just bored.  I stuck around until the doctor came in to update me on her situation.
Colleen came in and said that they determined what bacteria Haylee has - baccillus.  She could've got it from anywhere because it's one of those bacterias thats just in the environment.  As of that point (around 1pm) the culture taken on Feb. 23 has remained negative!  A full 48 hours will determine for sure, but all the positive cultures have began growing within 12 hours from the time the cultures were taken.  Colleen also said they were going to get the Infectious Disease doctors involved just to make sure they are treating the bacteria with the proper antibiotics and what other antibiotic could they give to narrow the meds down to just one...to make it easier for me to give to her at home.  As long as everything stays on this course, Haylee could go home by Sunday or Monday.
I left feeling good about the conversation, I left and went to pickup Mason.  I missed my sweet dude!!  We went home so I could drop my stuff off and then unpack before taking Mason to dinner.  On the way to dinner, my mom called and said the ID doctors came in and said they were going to change her antibiotics to something else and suggest to her doctors that the line come out.  Needless to say, my heart dropped but I figured Saturday at the earliest and we would just relax tonight. 
Mom called back about 15 mintues later to say they were going to pull the line out TONIGHT!  Really??  What a way to spring it on someone.  My poor mom was having to deal with all this and I was feeling really bad - for my mom, that I left, and for Haylee.  The surgeon came in to talk to my mom and told her they could pull the line...in her room...with just a local.  Um, ABSOLUTELY NOT!!   My mom told the surgeon 'no' and she said he acted like that didn't matter.  I told her to make sure that no one touched her without making sure she was on SOMETHING!  Propofol, or something!  They would have a bigger crisis on their hands if they just did a local...she would be screaming out of fear.  Since I thought they were going to do it tonight, I called my friend, Meth, to see if she would stay with Mason so we could go down there.  She was there in 20 minutes, but they decided to pull the line tomorrow morning so they could do it in the OR (and give her something.  Thank you to my mom for making sure my baby was taken care of!!! And thank you to Meth, for dropping everything and being there for my sweet dude on a moments notice). 

Haylee will have the line pulled Saturday morning.  It will stay out for a few days and she will have an IV in her hand so she can still receive antibiotics and other medications until they are ready to replace the line with a new one.

4 comments:

  1. Meth, you are so sweet! What a blessing you are ;)
    Glad all worked out.... Busy few days in your house! I miss ya'll so much!
    Haylee's pictures are so precious...
    Stay strong Haylee Kate! Mommy too!
    Ash

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  2. Oh Ryane, you all have been through so much. Miss Haylee, you are a VERY strong young lady. You keep fighting....you will be home before you know it to have Mason pester you :). So happy to hear that everything worked out and that Meth could come to help. Stay strong we are all thinking and praying for you!

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  3. I hate they had to take it out. Hope this helps though. Prayers going up. Love you guys! Call me if you need me. Love ya! Stephy

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  4. It was so good to see you.... I love your little man. And I think he kind of likes me too.. :). Btw... Tell Adam my arm is still twitching!! Hehe. JK lol

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