Rehab Day 1, Evaluation Day

Yesterday (Wednesday) marked six weeks since Harlie's surgery. Sigh. Feels like way longer with how crazy and stressful it has been at times.

We finally got authorization from insurance for inpatient rehab on Wednesday. I guess I don't need to say how ridiculous that is. Certainly someone should realize that us sitting in the hospital for six days waiting for an approval is more expensive than sending her to rehab for that same time period. I called my insurance contact to find out what was taking so long and he said they were trying to find out why she had to go to a rehab facility in DC versus Richmond. Um, because Richmond doesn't have one? There's your answer in one second. Let's get this show on the road already.

Given that we had no idea when authorization would come through (and no guarantee it would be approved) it was torture to wait around each day. By Tuesday I reasoned that she would be more active (and happy) at home. Not to mention the longer she sits in a hospital, the more likely she is to get sick. So, I said they had until Wednesday afternoon, or I was going to take her home. Of course, late in the day, after I had made my mind up that going home was a good idea, and after I told Tom to come up, the approval came through. Such is our life.

So, we were transferred yesterday late afternoon, via ambulance.

We arrived too late to get any evaluations done, of course. Which means our first day is all evals. Which means she won't get started until tomorrow (Friday). I think Saturday is a light therapy day, and Sunday is no therapy.

Oh, forgot to mention that trying to get her discharged, and getting all follow up appointments scheduled was difficult. Apparently our insurance (she's straight Medicaid, but through Optima) is now requiring preauthorizations for doctor's appointments. And those preauths take 2-3 business days. And they can't schedule them till they get authorization.

Ahhh, if only my medically complex kid would cooperate and give me 4 days' notice when she gets sick or needs medical attention...

I'm sorry, but that's just not going to work for us. So, I had to call my insurance contact back and explain the problem. He called me back today and asked me to send him a list of the doctors, contact info and about how often she will need to see them (if only I could predict the future...) and they will set up preauths for a year's time.

All of this is because I chose to go out of state/network. And I should add that we have been coming to Children's National since the day she was born. So, we were here first, before she had Optima.

It has been 11+ years since I've had the freedom to make choices when it comes to her and a lot of aspects of my/our life. I just can't stress this enough. We are where she has to be and having more barriers in our way of caring for her feels especially burdensome.

This is a paragraph in her discharge paperwork...

It is crazy to be a mom and read all that stuff about your child. And I knew it all, was right there with her. Still seems hard to believe.

Anyway, it has been a busy day. She had evals with occupational therapy, physical therapy and speech therapy. Plus, there's been a lot of people in and out. I have had to answer so many questions.

So. Many. Questions.

Everyone wants to know what she was like at home, could she walk, could she go up the stairs, was she talking, etc. And I have to ask, do you want what she was like before August, or after? Because those answers are entirely different. So I have to give both.

Tomorrow will be a very busy day.  Here is what her day looks like:

8:30-9:30 OT
9:30-10:00 Educational Eval
10:00-11:00 PT
12:30-1:00 SLP (Speech)
1:00-1:30 TR (recreational therapy)
1:30-2:00 SLP

Whew! But, that's why we're here and the more she does, the sooner she gets to go home.

Before I forget, here are a few pics from the HKU...

Diane

June (wound care). She used to do trach care
And she is the one who trained me and Tom
when Harlie was a wee babe.

Mandy, PT

Melissa, NP in the CICU. She came by to say goodbye.

Moving into to rehab...

Another transition of learning where everything is and how it all works. I am so tired and I just want the comfort of my home. Hopefully just one more week...

Before we left the HKU, we were able to give her a shower and wash her hair with actual water and soap. That was her first proper (not a sponge bath) washing in six weeks. She hated every minute of it, but it was worth it. Just look how good she looked last night.

She did great today with all of her evals. She had to answer a lot of questions, too. The positives from today:

1. She wore her HME during the entire hour of PT and never took it off. She would not wear one before her surgery Feb. 21st. She always said it was hard to breathe. So, I'm taking that as a GREAT sign.

2. She comfortably wore a PMV (speaking valve) for at least four minutes during her speech eval. Her numbers looked great and it was so wonderful to hear her voice. She still reaches to take it off when she talks. But I think that is pure habit. She takes it off to plug her trach with her finger. I think she will get used to wearing the PMV in time. So, I feel really good about that.

3. She went up four stairs with little support today. That is awesome and such an improvement from yesterday.

Okay, I have to get to bed. I feel like this post is kinda choppy and all over the place. But, it took all day to write with many interruptions. And I am so tired and my brain is having a hard time. During OT, I said, "Isn't today Monday?" She said it was Thursday.  Good to know.

Thanks for all the love and support!

Much love,
Christy xo