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More Tests & More Tests,etc.....


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Well, since my last post, Sara has continued with the intermittant fevers. She got to 104.2 on Tuesday, and her doctor sent her to the outpatient clinic at the hospital so she wouldnt have to wait in the ER and be seen by a doctor with no clue about her. The nurse did two sticks on her arm for blood and also drew from the Groshong. The thing I'm wondering about is if any of you have had blood drawn that looks "watery". When they drew from her arm, the blood that first came out looked funny, like it was thin and watery. Then when they tried to draw from the Groshong, it was very difficult to draw from, they had a hard time getting enough for the tests. When they were going to flush it after the draw, the saline solution wouldnt go through. The nurse called in someone else who was supposed to be more proficient in that sort of thing. Well, she had to work with it for quite a while. :( In the mean time, they put in a call to the doctor who put the Groshong in place. But the solution finally went in--very slowly and with much difficulty--but it did flush. This concerns me very much, I know it should be easy to draw from and to flush. :ph34r:

At least we do have one result of the tests, her urinalysis shows a bad UTI. Her doctor called in some Cipro for that and said we would have to wait for the cultures to come back to know more. Just seems to be more and more of the same. I'm afraid there is something they are not catching..... We've been through all this before and it has resulted in lengthy hospital stays. Maybe we will get to the bottom of all this soon and put a stop to it ( at least until the next time) :)

I do think her doctor is going to see about home health for her. That way she wouldnt have to get dragged around for all these tests. The nurse could come right to the house and do the draw. Also they would report any changes or problems directly to her doctor. I think this would be a great benefit. Do any of you have home health care? I'm not too familiar with it, just when my Dad had it when he had cancer, and that was 13 years ago.

Best to all--Susan

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Wow, I'm so sorry your daughter is still suffering with the fevers. I hope the source has finally been found with the UTI infection, and this can be finally cleared away.

I don't know much about home health care, other then my best friend having it when she had MS. However, I don't think they were nurses. I think they were aids from and agency, and they came in the morning, and evening.

I found this link below after I checked your profile to see which state you live in.


Your a very special person to care for your daughter the way you do. It is so important to have family support. You go above and beyond the call of duty with all that you do to make sure she is safe and comfortable------------------that's a lot of love. :ph34r:

There needs to be more people like you Susan.

HUGS to you and your daughter.

Maxine :0)

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Maxine, thank you for the kind words. It is very frustrating to see my daughter so sick at such a young age. I by nature am a "fixer" so it just makes me mad to not be able to fix her or at least find somebody who can !!!!! It helps so much to be able to come here for comfort and understanding. Thanks again for your concern. Hugs right back to you---Susan

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me again:-) so sorry that things are still so rough. not really sure what words of wisdom to offer other than to keep on hanging in there the best you can, which i know is often easier said than done from any perspective (patient, mother, etc).

not being able to draw blood out of a central line may or may not mean much of anything. most often it's just a positional glitch that resolves on it's own, though of course it can mean something more such as a blood clot. one thing that's ALWAYS true though is that if it's not wanting to flush &/or give blood for a draw that it should never be forced b/c regardless of the underlying issue - small or large - that can in & of itself cause significant problems. hopefully the nurse that was called in was truly proficient in working with lines b/c, quite honestly, no one else should be touching them if/ when they are acting up. though i know that in the midst of an acute crisis, however large or small, you're largely at the mercy of whoever is around & are thus in a bit of a pickle. and as much as i'd like to reassure you that they're catching all there is to catch, if i'm honest i'm right with you in wondering if there's still something hiding out somewhere that as of yet has escaped detection. i will definitely continue to hope & pray though that the cipro works wonders &/or that, if it doesn't, that the core issue is identified asap so that it can be dealt with.

regarding home health care, for the most part i have had largely good experiences with the nurses i've had over the past few years, though there were a few exceptions along the way :ph34r: . largely i've had a primary home health nurse each of the 2 places i've lived since first starting with home health care & both have been truly wonderful. over the years i've had home nursing visits ranging from two times a day to intermittently as needed, though if they're less than once a month generally one will be discharged from the service & readmitted when needed. i also have nursing students that i've hired myself to help with some things that i either can't do myself or else that, by not doing them, i'm able to use my limited time/ energies on other things. they have also been great. do you have specific questions? most importantly i would just encourage you to NOT accept anyone that you & sara are not truly comfortable with, both clinically & personality-wise. when i had to move home the first nurse that we tried was absolutely horrible. i was hesitant to complain but am SO glad i did, eventually causing us to not only end up with a new nurse but a new agency all together.

in terms of what choices you will have it's going to be dictated largely by sara's insurance...i can't recall at the moment if she has medicare/ medicaid? if that's the case the guidelines are MUCH more stringent such that qualifying for home care is a bit tougher, especially on an ongoing basis. qualifying after a hospital admission, related to an acute illness, etc is quite doable but having a nurse assigned to you on a "permanent" basis is less realistic without very particular circumstances. that said there are other options as well, such as having other home health professionals be a part of the home care team, i.e. phlebotomists (sp!) for blood draws. the fact that sara has a central line, however, bodes well for qualifying for actual nursing visits though since others are not certified for central line blood draws. not once did i have trouble with qualifying for my home nursing over the past several years until my infectious disease docs put the ax on our drawing blood from my central line/ port (due to the increased risk of infection). as such, i dont need a nurse to do a regular blood draw & since i'm an old hat at all my other stuff (tubes, accessing my port, wound care, dressing changes, TPN set-up,etc) i no longer qualify for any "teaching needs" that would allow regular nursing visits. any time there's something acute i still qualify with no problem, which - since i almost always have somethign acute going on - means i almost always qualify, but for regularly scheduled blood draws i qualify for a home visit from a phlebotomist now rather than an RN. confused yet?

most of my ramblings probably aren't important but let me know any questions you do have re: home nursing (or other home health care) & i'll try to help out in any way that i can.

:( melissa

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