The Leukemia & Lymphoma Society - Fighting Blood Cancers
8 Replies Last post: Nov 17, 2009 7:17 PM by teamdonavynn  
teamdonavynn   75 posts since
Apr 11, 2009
Currently Being Moderated

Nov 16, 2009 5:55 PM

Nerve wracking and so frustrated!

Donavynn had a fever yesterday so we went to the local ER they drew cultures and labs, gave him a dose of antibiotics and we were sent home b/c his ANC was 1200.  Today he had clinic for Erwinia.  His temp has been fluctuating between normal and like 100.5, so I asked if they would draw labs again to see if he does spike what they want us to do.  The doc said no, that we would have to go to the ER if he spikes and go from there which basically pissed me off b/c we live 2 hrs from the hospital and we were there this morning, they could have at least done that to help me relax.  Consequently my stomach has been in knots all day as his temp continues to fluctuate but not reach high enough for them to take notice.  I'm still concerned however b/c his temp is still rising it may not reach that 101.5 marker but it keeps going above normal.  So I'm irritated and frustrated and want some answers.  We just got home Friday from his radiation (he had 8 days of cranial radiation) prior to that stay he was in for a fever so he went directly from the hospital to the Ronald McDonald house and now we may be heading back up tonight.  I just wish he could catch a break.  He has had a cough for 2 months that just won't let up, which is pretty typical for him during the winter months.  I'm just so irritated at this point I want to scream

mom23   68 posts since
Apr 3, 2009
Currently Being Moderated
1. Nov 16, 2009 6:43 PM in response to: teamdonavynn
Re: Nerve wracking and so frustrated!

Ugh!!  Just wanted to say I hope the fever passes soon for all of you.  I just keep thinking that at the end of the 3 years of treatment I am going to go to a beach and do absolutely nothing for at least a week.  Sleep...walk the beach....sleep....walk the beach....watch a sunset...sleep. I am so glad we have people ahead of us so we know that it is possible to get through all the ups and downs.  Take Care!

doublewishmom   118 posts since
Aug 11, 2009
Currently Being Moderated
2. Nov 16, 2009 8:27 PM in response to: teamdonavynn
Re: Nerve wracking and so frustrated!

If you really want to bring him back in (which you don't, but on the 

other hand, you do because then you'll know), just tell them his temp 

was 102. If you get there and it is only 100.5, oh well. They'll 

still do a blood culture, right?

doublewishmom   118 posts since
Aug 11, 2009
Currently Being Moderated
3. Nov 16, 2009 8:28 PM in response to: mom23
Re: Nerve wracking and so frustrated!

Oh, and mom23, I am so on that beach with you!  We have honestly 

thought about throwing a huge party when the boys reach 5 years OT. 

And then I think me and the hubby deserve a trip to Cancun.

Shakinquaker   312 posts since
Apr 5, 2009
Currently Being Moderated
4. Nov 16, 2009 10:10 PM in response to: teamdonavynn
Re: Nerve wracking and so frustrated!

How frustrating!!  I can't believe they wouldn't draw the lab.  I get it, they don't want excessive medical cost, but you aren't asking b/c you want to go to the movies.  He has had symptoms.  BTW- our magic number is 100.5.  Thinking of you- hoping the fever gets gone.  Dream of the beach...

Mary   71 posts since
Apr 9, 2009
Currently Being Moderated
5. Nov 17, 2009 7:08 AM in response to: teamdonavynn
Re: Nerve wracking and so frustrated!

I would have been hot if they wouldn't have drawn the labs.  They probably would have kicked me out.  I am so sorry you guys are having to deal with that.  I do hope his fever goes away soon.  Take care,

 

Mary

nana   158 posts since
Apr 3, 2009
Currently Being Moderated
6. Nov 17, 2009 7:40 AM in response to: teamdonavynn
Re: Nerve wracking and so frustrated!

Wow, sometimes common sense isn't very common.  Why not run labs?!?  I am thinking of you all and hoping Donavynn gets better soon.

 

Nana

King Alex   116 posts since
Apr 6, 2009
Currently Being Moderated
7. Nov 17, 2009 7:52 AM in response to: teamdonavynn
Re: Nerve wracking and so frustrated!

I am with doublewishmom - If you feel that he should  have labs drawn again and they aren't wanting to - say his temp at home was 102 or whatever - I am not generally a fan of trickery to get my way but I have been known to fib a bit to do what I think is best for my kids. I remember once when we were in the hospital for fever (the story of our life) and the nurse was supposed to give him tylenol and over an hour later when he still had not gotten it - I was mad. I had called her in a couple of times and she still had not brought the tylenol. In frustration, I kept kinking his line (it was just saline) - setting off the monitor at the nurses desk - after the 6th kink she got the hint and brought the tylenol. She commented later how the tylenol must have calmed him down because he wasn't crimping his line anymore - I think I just smiled. The tone of her voice was not fooling anyone, she had known I was the culprit. But I will have to say that our service was better from that nurse.

Gina

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