Happy Valentines Day to everyone or " Happy Valentines Birthday" as Alicia has been telling everyone all day. I laugh ever time I hear her say it. She has had a very uneventful past two days. She is feeling like her old self again and she is getting very hyper stuck in this little room.
I am very tired, as I usually am being in the hospital but this time around is three times as bad. I am having to sleep with one eye open. This floor we are on is driving me nuts. The nurse's are very nice but when it comes to caring for a BMT patient they lack alot of knowledge. The past two nights they have been late giving her her meds, so I have had to set my alarm for three and four in the morning just to make sure it is getting done. Thank goodness I did last night, her Zocin, which is the anti-biotic that is fighting the many bacterias in her blood was given over an hour late. I pushed the call button three times before they finally came in. On top of the meds I have to watch every nurse coming in. They hear the machine beep when it is finished and anyone of them just walks in, leaves the door open and has on no gloves, mask or gown. I am going crazy watching them and correcting them. Then the worse happen this evening. One nurse was about to hook up her fluids and meds and I could not belive what I was seeing. She was cleaning Alicia's line with an alcohol wipe. I about freaked. I said STOP. She looked at me strange when I told her she needed to scrub it with a chloro scrub. She said well it only an IV, I said are you serious. I told her that we are here for a line infection, that this was nothing to play with and yes I was serious. I asked her how many BMT kids she had cared for and she said only a few. I will be so glad when Alicia gets her Mediport Wednesday so we can get as far away from this floor as possible.
Thank you so much Dianne, John, Michelle, Tina, Jo and Jacy, Jenny and Tana, ans Steve and Shawn for the many valentine gifts you sent to Alicia. And thank you George and Anita for the gifts as well she loved all of them. She kept saying it was her Birthday and I told her no it was Valentines Day so I believe that is where she got the Happy Valentines Birthday.
I will update more hopefully with a lot more rest.
ALICIA'S JOURNEY WITH FA
Welcome to our blog where we try to keep family & friends updated on our daughter/granddaughter, Alicia, who is one of the most adorable five year olds ever! She was born with a very rare & aggressive disease, called Fanconi anemia, which causes bone marrow failure, as well as different cancers . She is currently undergoing a bone marrow transplant to try to cure her bone marrow issues. If you'd like to gain a little more background, please visit our first entry HERE.
Saturday, February 14, 2009
Day + 240
Posted by Michelle at 9:18 PM
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5 comments:
Oh I'm sorry you're having such a horrible time on that floor! Why did they put Alicia there if they don't know how to take care of her?!
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Psalms 121:1-4 I will lift up mine eyes unto the hills, from whence cometh my help. My help cometh from the LORD, which made heaven and earth. He will not suffer thy foot to be moved: he that keepeth thee will not slumber. Behold, he that keepeth Israel shall neither slumber nor sleep.
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I am so sorry that the staff on this floor are so out of it, when dealing with the proper care for Alicia. You are doing just a great job keeping on top of EVERYTHING!!! Hang in there. Thinking of you!! Love, Dianne
Hi Michelle,
that sounds a bit stressful. AS I mentioned, normal nursing is a lot different to BMT nursing. On a normal ward, the protocol is to clean the line with an alcohol swap if it is just an IV. In case anyone is wondering, I am an RN....not just saying things....hehe...haha. SO on normal wards if it is just an IV we clean with an alcohol swab. However, if we are connecting up a special like like a PICC line or a medi port or something like that then we use aseptic technique and scrub with that other stuff :-)
Alicia obviously just has a normal jelco in place which is usually cleaned with just an alcohol swab and doesn't usually need aseptic technique.
However, the nurses sound like they needed a little bit of education on the care of someone from a BMT and that put as a sign on her bedroom door. That would help them remember. Unless the care like the iv has changed....then a doctor would have needed to tell you so you don't feel panicked. The BMT ward will automatically use aseptic technique no matter what line because they are used to taking extra precautions. How come Alicia is on the normal ward? Sorry for the rave on!
Love Charisse
I regret that I have been able to follow your blog as much over the last five weeks as my own son with FA was in the hospital for non-FA related reasons. I was very upset to read your post and the difficulties you are having. We too had similar problems at our hospital. The sad thing is reading your update made me wonder if a hospital exist where you don't have to watch everything like a hawk? Certainly you expect there to be individuals that can not meet expectations, but not entire units or teams. I think maybe parents with chronically ill children are so overexposed to the hospital culture we begin to know what we are looking for to be done and not to be done. We begin to learn the protocol and expect it to be followed, simply. we do not expect more than that. I certainly pray that you can get off the unit and somewhere that will be more suitable. These children deserve devoted care, not just someone who is doing a job going through the motions. Kudos to you for remaining diligent and advocating! Stay Strong and best wishes for a quick journey home. Prayers for you all!
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Isaiah 26:4 Trust ye in the LORD for ever: for in the LORD JEHOVAH is everlasting strength.
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