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Micromanage or bust.
June 17th, 2009 by Tiff

nurseratched

For the last week I’ve been giving Ivy her intra venous antibiotics. One is a slow push and the other is a pump that infuses the medication over 24 hours. I clean the area and flush the line.

It’s been great at home.

I set it all up. Ivy knows the order they go in and within half an hour we are done and she is off and playing again.

flushmedsflush2

Short and sweet and easy.

She feels good and looks good, despite having picked up some viral respiratory thing that was wafting around the hospital and despite us being in the thick of meltdown week.

The paed has never seen her ear look so good and is optimistic that things will  go well when she loses her PICC.

Me, I’m not so sure.

I have seen all this before and the infection always ultimately comes back.

So forgive me for being a little wary.

Today we had to see him and then go for a check up with the Out and About team, who are managing the home medication and the PICC.

It was so long and stressful, an hour from home and it was pouring with rain.

We arrived at 10 and didn’t  leave until well after 1pm. Most of it was sitting around, waiting

and we have to do the same thing next week.

Next week on Wednesday, after the IVIG on Monday, where they will canulate her otherarm for the Intragam because, God forbid, we interrupt the antibiotics for four hours while she is infused.

That would upset the applecart too much and mess with the orders of the infectious diseases doctor.

On Wednesday they will decide whether to stop the IV antibiotics and move to oral again but we still have to go into the hospital anyway, just to have a check up and either get more supplies or be discharged from the program.

That doesn’t mean she will get the PICC line out on Wednesday.

Nothing so easy and organised.

She is considered a paed surgical patient and the out and about team don’t ‘deal’ with kids and PICC removal.

It means she will have to go back on Friday to have it removed, by another doctor, who doesn’t know Ivy at all.

Friday because that is the only available day for this to happen.

So in a nutshell;

 the micro managed girl will be in the hospital three out of seven days next week and, after seeing at least four different doctors and various nurses, all with differing opinions, we may be on our way to finding out if this month’s medical intervention has worked.

I am hopeful but not getting my hopes up, if you know what I mean.

happyathome

Happy at home. The pump lives in this little bag made by Blossom.

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20 Responses  
river writes:
June 17th, 2009 at 17:48

I thought a PICC line would stay in longer, like a month or two, making sure all deep infections were well and truly gone. Ivy looks happy to be home.
In the previous post, Noah looks very much like Lily. He’s a beautiful boy.

Mandy Smith aka Small Threads (2 comments.) writes:
June 17th, 2009 at 18:38

I don’t know how you do it all. You are an amazing Mom, Ivy is a lucky girl!

Alison (141 comments.) writes:
June 17th, 2009 at 18:58

Sending all of the good vibes I can muster.
I’m sorry you guys have to deal with so much of other people’s crap - but I’m really glad Ivy is doing well today.

Kathleen (26 comments.) writes:
June 17th, 2009 at 20:35

Hoping for the best for this sweet little girl. What a wonderful thing Blossom did making her that cute bag? Don’t push getting that PICC line out — it can be extremely helpful in Ivey’s treatment issues. I would think they would leave it in much longer also. Give her hugs and kisses please.

Trish writes:
June 17th, 2009 at 20:48

I thought PICC stayed in for a month too …why would tak eit out before making sure she was infection free. MRSA is nasty.
I hope the management improves …waiting around for nothing sux.
Glad Ivy is enjoying being home and so are you. (((hugs)))
Gorgeous Blossom bag .

Bec (24 comments.) writes:
June 17th, 2009 at 21:19

They really don’t think about your lives when they fill your world up with so many appointments :/ It really annoys me that hospitals seem to think that they’re the be all and end all when it comes to swallowing up your time - not to mention you really don’t want to be in a hospital at this time of year (if ever and by that I mean never).

Super Sarah (25 comments.) writes:
June 17th, 2009 at 21:35

Unbelievable, it all just sounds so complicated but thank God you are Ivy’s Mum!

Blossom (88 comments.) writes:
June 17th, 2009 at 21:51

heres hoping it all goes.
I am always in your corner.hugs

so glad Ivy likes her bag :)

lceel (334 comments.) writes:
June 17th, 2009 at 22:42

You are amazing. And she is gorgeous. And you are amazing.

M & B writes:
June 18th, 2009 at 00:17

I too, would have thought they would leave the PICC for longer just to err on the cautious side of the fence? Ivy is such a star dealing with all of this, actually your whole family are stars with all that you have to deal with xoxox

Barbara (156 comments.) writes:
June 18th, 2009 at 01:06

Blimey, what a palaver. Hospital’s are such a pain in the butt when it comes to appointments. They really do seem to think that people have nothing better to do than drop everything and pop in there whenever it suits the Drs. I know they’re busy and all but surely a little co-ordinating wouldn’t be that hard.

(((hugs))) to you both.

Nicole (21 comments.) writes:
June 18th, 2009 at 01:13

I must admit that I too am surprised that they went to the effort of placing a PICC line and are now thinking of removing already! I would think that it would make sense to try oral antibiotics and keep the PICC line in place for a few weeks to ensure that that the oral antibiotics are working. I’d hate to see them have to place another line. Have they ever talked about placing a port-a-cath? It was the best thing that we have ever done for Cody, makes everything so easy (they do blod draws, IV antibiotcs, IVIG…everything through it).

Ivy looks absolutely amazing though! She is so beautiful and does look so healthy! I always find it difficult when I try to explain how sick Cody truly is….and I feel like people think that I am embellishing my story or that I just don’t know what I am talking about because he to LOOKS great most of the time. It’s what is going on on the inside that people never truly understand unless they are in a similar situation. SO….I just want you to know that I think she looks wonderful, but that doesn’t mean that I do not understand that unseen things may be going on still.

You are being a wonderful care provider and mommy too! Keep your chin up and give Ivy a hug from her IVIG friends in Texas. We think of you guys everyday and are always sending positive, healing thoughts your way!

Miss Ash (57 comments.) writes:
June 18th, 2009 at 01:20

I’m going to second what Lou said. :)

Guera (151 comments.) writes:
June 18th, 2009 at 01:27

Aw, man! I don’t know how you do it! Ivy is so lucky to have you, a Mum who not only does an amazing job of being a Mummy, but a live in nurse too. You are amazing. Big hugs to the brave little girl. xoxo

Marylin (120 comments.) writes:
June 18th, 2009 at 02:55

Here’s hoping it’s worked for Ivy. xx

Veronica (506 comments.) writes:
June 18th, 2009 at 09:35

Yes, I think I know what you mean. (((hugs)))

Hyphen Mama (305 comments.) writes:
June 18th, 2009 at 14:04

You were a nurse, right? Well “were” is subjective. You ARE a nurse, either way you look at it.

I love the picture of you. It’s so telling.

I hate that this is the way it has to be for Ivy. I keep wondering if there were “something else” they could do, but I guess they’re doing everything that they can. I always think it’s lucky you’re in Australia, because in the US you’d be bankrupt by now from medical bills.

I hope that soon Ivy’s little body will outgrow some of this and she can move away from all this intervention and her body can heal itself. I hope that is on the horizon.

Xbox4NappyRash (314 comments.) writes:
June 19th, 2009 at 04:28

Wow, just wow.

Jeanette (253 comments.) writes:
June 19th, 2009 at 06:49

Really really hope that this works!!

fancy feet (101 comments.) writes:
June 19th, 2009 at 10:03

I don’t know how you manage, but you always do. I’ve said this before and I’ll say it again, you amaze me. You really do.

I hope everything goes very, very well for Ivy and you. Of course, you.

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