Micromanage or bust — 5 Minutes for Special Needs


                               

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.

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 fellow blogger Blossom.

Originally posted at Three Ring Circus

Email Author    |    Website About TiffandIvy

Bringing up seven kids has led to in depth knowledge of asthma, autism, fetal alcohol syndrome and drug induced developmental delay, immune deficiency and autoimmune disease, ectodermal dysplasia, neonatal death and cardiac defect. Despite all of that, I didn't know I was about to start the ride of my life with the illness of my youngest daughter, Ivy.

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