Thursday, May 5, 2011

Waiting for Monday.

We moved today.  We are officially in the Heart and Kidney Unit (HKU) vs. the CICU.  We had one of our favorite nurses today in the CICU and our nurses on the HKU seem to be really good, too.  We still have a private bath and shower so I'm pretty comfy, all things considered.

Last night was our best night yet (no beeping!).  We both slept really well.  Our night nurse said that neither one of us moved all night.  And he tried his best to do as little to Harlie as possible.  He said that she kicked the blanket off her during the night, so he could see all of her IVs without having to wake her, which is great.  She normally doesn't like blankets on her - but she is using it as a shield to protect herself and hide.

Since I got a good night's rest for once (and had a nurse that I know is great), I went for a run outside.  Wow - did that feel great! The weather was perfect - a little chilly at first, but perfect once you got warmed up.  And the sun was shining.  Ah, what a little fresh air will do for your spirits!

So, Harlie is very scared and untrusting this stay.  The second anyone walks in the door, she looks at them and says no while signing no AND shaking her head no.  She is using all she's got to get her point across.  No matter what the question - the answer is NO.

Everyone wants to say "I'm just looking" and have her stop fighting and start cooperating.  But, every time she's ever heard that, it has been followed up with a stick.  It's always struck me as odd that they would say "just looking" as they are trying to find a vein to stick.  I mean, I get that they are, in fact, looking - but she's well aware that looking means sticking eventually.

When we moved to another room earlier, they put her in a different bed first.  She saw the other bed and started crying.  For all she knew she was headed back to the OR.  I told her (and signed) that we were moving to a new room but that didn't appear to bring her much comfort.  She just doesn't trust anyone - including me.  I've had to hold her down many times too many. :-(

She's not up for playing or coloring yet.  Maybe I'll work on that tomorrow.  And I requested speech therapy while we're here.  It's the first time I've done that.  The reason I did it is because when we went to lunch yesterday, there was a table set up displaying hearing aids and a communication device (just like Harlie's).  So, in passing I said, "My daughter has that exact one" and then we started talking.  It was a speech therapist.  Huh.

I don't know why I've never thought of that before.  We walked away and I started to think that maybe it would be good for an ST to come and show her some things on her device - medically related, or hospital related.  Maybe things she could say to a nurse?  And maybe it would be good for someone to come and play with her - that's not me.  She loves her therapists at home - all three of them.

So, an ST came up earlier, but she didn't know that device - so she's going to send the same girl I spoke to at the table yesterday to come up tomorrow.  It would be so good to see her play a little.

Three more days of just hanging out.  Waiting.  Hopefully it will stay like that - with no more unexpected trips to the OR.

The surgeon's PA (physician's assistant) came by to see Harlie today.  She said that if everything goes well on Monday and the wound looks good and she can close it as planned, we should be able to go home Tuesday or Wednesday.  She will go home in the brace and she'll have to wear it through summer most likely.  She'll have to wear it all the time - only removing it to bathe.  She said that we are going to have to be really tough about it.  It is so important to limit her movement while the bone is trying to fuse together.

So, I'm guessing that means no gymnastics?  Darn it all.

Well, that's it for now.  I'm going to try to use the next few days to get caught up with some blog posts I've been meaning to write.

Thank you so much for reading and caring!!!


Tanya said...

I'm glad that you're out of the CICU and looking at going home next week.

I hope Harlie is up for playing soon.

Heather said...

the countdown is on. . . three more days. two more days. . hopefully they fly by. I'm counting them down too. very cool idea with the speech therapist. I can't wait to hear how that goes!

and as always- thanks for keeping us up to date.

Anonymous said...

Thanks for the update. We are keeping you all in our thoughts. Sorry to see little Harlie so scared. Marcy