Wednesday, June 3, 2009

Not The News We Were Expecting

Well, I heard from Mae's doctor this morning. The blood work from Monday looked great, but when she called down to Children's to talk with the Infectious Disease doctor to get the go ahead to switch to an oral antibiotic, he told her that it would be best to continue the IV antibiotic treatments for another 2 weeks to make sure that the infection is gone for good. The infectious disease doctor claims he never said that Mae could switch to oral meds after 2 weeks but I know the other ID doc did. Another case of poor communication I guess. Anyhow, Mae's doctor agreed to follow the ID doc's recommendation of another 2 weeks, and they also decided to change the type of antibiotic so that it will only need to be given twice daily through the PICC line. No more 1Am or 1PM infusions which means that we can all start getting some sleep and Mae can return to school all day for the rest of the school year.

This is disappointing news and I hated having to tell Mae that the PICC is staying in for another 2 weeks, but she took it well and is jazzed about not having to get manhandled by me in the middle of the night anymore. I guess sleep will be our compromise for now.

She will still have to go in for blood work and another dressing change for the PICC on Monday. This past Monday it took an hour and a half to get all of the tape and dressings off and replaced. The worst is all of the adhesive goo mess and cleaning everything properly without disrupting the entrance of the PICC. After I suggested for what seemed like the thousandth time that they use the adhesive remover (conveniently supplied in the PICC dressing change kit) to get the sticky off of Mae and the tubing rather than just pulling, they finally listened. And wouldn't you know? It worked great! I know the nurses at the clinic don't care for PICC lines very often but heck, I know I could do it just as well myself with less discomfort for Mae but of course they wouldn't go for that.

Tonight the Gardener is going to take Mae to the clinic for the first dose of the new meds just to make sure that she doesn't have have any allergic reactions. I have to work tonight otherwise I would go too, but the home nurse is coming tomorrow morning for the 7 o'clock dose to show me how to give the new meds. Of course the new medication will be administered differently but rumor has it, this new one should be easier.

I am so ready for this chapter of our lives to be over. This morning when I was up to give Mae her meds, I was so exhausted physically and emotionally to the point that I was trying to wish this all away. I wished that Mae would have never pulled her tooth out on the bus which allowed the strep A bacteria to enter her body and settle in the bones of her foot. I wished that the first doctor we saw would have listened to me and not sent her home with the diagnosis of a common virus. I wished that the staff down at Children's had their crap together. I wished that Mae didn't have to be poked and pulled and miss so much school. Most of all I wish that she wasn't the sick kid. The kid who gets all of the attention for being ill and feeling crappy. I know we can't turn back the clock and make this all go away, but I just want it to be over.

9 comments:

Kelly said...

Sending virtual hugs your way.

;)

skyewriter said...

Hang in there, Aliceson.

You are a great mom, with great kids, a great husband and family. Give yourself a hug from me.

That little Mae is a brave girl. And determined it seems, too.

All my best to you and yours.

Riot Kitty said...

I am sorry you have to go through this, but glad it is treatable~! Did the note with the stickers arrive?

Bonnie Domrois said...

Ali, we wish you and the Gardener the best. We also wish you and Mae didn't have to go through all of this. Skyewriter is right...you're a great mom and you have great kids. You'll all get through this and be stronger for the experience. (Hopefully now she knows not to let her friends help her pull her teeth out.) :) You also find out who your friends are...and you've got a great many of us.

Blonde Goddess said...

There's a light at the end of the tunnel. You'll get through this and things will be normal again.
Just hold on and it will soon be over...

Out in Them Sticks said...

Oh girlie, hang in there! Big hugs,
-m

Rachel said...

Oh my gosh. Aliceson, I'm so sorry. I haven't blogged in so long and I've missed this whole saga. I feel horrible for you and for poor Mae. I'm so sorry your family has been going through this. It sounds like Mae's on the road to recovery, but it's been a long journey? Good luck, I hope everything is back to normal just as soon as possible!

melodyofamom said...

I haven't been on your blog in several weeks, and either I missed something the last time I was on here or A LOT has happened in the past few weeks. I am so sorry your cute little Mae has to go through this ordeal. I am glad that things are starting to look up a little, at least.

Funnyrunner said...

awww. Hang on... almost over!