Thursday, April 12, 2018

Rehab Days 5 - 8

Rehab Day 5 - Monday

I don't remember much about Monday. She had a full day of therapy (8:30 - 2:30). And did it all while smiling..

Her OT had her stand on this plate and she had to lean left or right to make the basket catch the apples.

She also sat on it and had to lean left, right, forward and backward to play the game. All good core stuff.

And lots of stretching. Her hamstrings are so tight that her knees stay bent all the time.

The atrium was pretty sunny, so she asked for my sunglasses.

Rehab Day 6 - Tuesday

She started a group speech therapy session called Convo Club. She wore her speaking valve and sat at the table with some other kids here. It was SO awesome to see her in a more social situation. The SLP had each of them say their name and say hi to each other. They discussed what month it was (I'm sure that was confusing to Harlie given that it was February last she knew). I forgot to tell you that her OT asked her what season it was. Harlie answered winter. Her OT said it was spring, and I told her, in her defense, it was winter when she got here.

Anyway, they also talked about their favorite holidays. I was surprised when Harlie answered Halloween. And I just keep thinking about how freaking cute she sounded when she said it. I am LOVING hearing her voice again!

But seriously, I'm so surprised. She doesn't even get to eat the candy. She gets very tired with having to walk up the walkways and stairs to the doors. She must really like the dressing up part.

She used a cool touch screen to motivate her to stand up and reach high and to the left and right.

And she did an obstacle course.

I have found a new routine. After she is done with therapy for the day, I walk back to the RMH, shower and pack clean clothes for the next day. Then I walk back. This day I stopped at a restaurant on my way back to eat and have a beer. The cafeteria at the rehab center closes at 2pm!

Rehab Day 7 - Wednesday

Yesterday was another good day. She's such a happy kid!

In PT she went up four stairs, three times. So, that's awesome. And she got to exercise on a machine, which she clearly loved.

She had Convo Club. It was really funny. They had show and share. That was cute. The SLP started with the normal hi's and the date. I was so surprised that Harlie volunteered that it was April. She must've remembered from yesterday. I love hearing her volunteer information and answer questions.

The boy in the group kept pretending that he had fallen asleep. So, the girls would yell for him to wake up. Harlie started this thing where she would count down 3, 2, 1 and they would yell. I know it sounds so silly, but it was so wonderful to see her having fun with kids. This may come as a shock, but as amazing and funny as Harlie is, she doesn't have many friends. So, it is a rare occasion to see her in that setting. So, I just soaked it up. She looked like she was really enjoying it and it was so great to watch her.

She had a follow up appointment with her ENT, Dr. Preciado. So, they sent a van to take us over there. When they told Arlene (her nurse) that they were downstairs, I realized I didn't pack up anything. I'm so out of practice! So we quickly grabbed the oxygen tank, go bag, suction bag, my bag and her tablet, put her in the loaner wheelchair and headed downstairs. On the first floor, I realized I forgot her speaking valve. Ugh! So her nurse ran up to get it while we were loading her in the van.

Then, we got out of the van at Children's and I after I walked her down the hallway, I realized I left my phone in the transport van. Great. I am just all out of whack. I am soooo ready to be home and feel like myself again. Everything about our life is different here. I'm ready for our crazy normal again.

Anyway , the appointment went well. He measured the pressure while she wore the speaking valve. The pressure was low, which is great, so we know she can wear it safely. Yay!! He changed her trach so he could make sure it is easy to change, and it was. So, all is good there. Whew! Also, her wound is healing so well now. So, that's awesome. He has high hopes as far as her airway goes. So, I do, too!! Oh, what a good feeling! It has been eight months since I've felt hopeful about her airway.

After her appointment, I took her upstairs to the CICU to see if any of our nurses were working. The girl at the front desk said the unit was really busy, so I didn't want to bother them. But, she called Erin for me and she came out to see us. Love her!!

Then we headed back. Oh, and while we were getting back in the van, we saw her PT, Mandy. So, that was great. I forgot to mention that she came by to visit Harlie on Friday. Isn't that so sweet? We have had so many good people help us. It has been amazing.

Once we got back, I was done. I don't know about Harlie, but this rehab is wearing me out!

But, we are scheduled for discharge on SATURDAY!!! Woohoo!! I am more excited than I can put into words. For real.

Arlene said goodbye. She isn't working again till Sunday, so it was our last day together. She is a wonderful nurse and she worked really hard to get Harlie what she needed. Harlie often creates new rules wherever we go. She is not your standard anything. Arlene rose to the challenge.

Rehab Day 8 - Thursday

Only two more full days of therapy to go and then we get to go home!!!

She has another busy day scheduled. Each night they bring me her schedule for the next day.

Her day starts with a swallow study. A few times, she has coughed after drinking water. Considering she had major airway surgery, they just want to make sure she can swallow safely. So, hopefully that goes well.

Okay, I have to get up and get ready so I can get some coffee before her swallow study.


She did well for the swallow study. With water, she had "penetration" meaning it started to go the wrong way, but then fixed itself. She feels it, which is why she coughs. So, no aspiration. They think she will get stronger over time. She swallowed some yogurt and there was no penetration, so that's great. The water is thinner and moves faster. Once it corrects, she's fine. So, that's all good.

She had a session with the teacher (unfortunately she had been out sick this week and today was her first day back). That went well. I think she really liked being in that setting again.

I'll go on ahead and wrap this post up now. Thank you for all the love and support. I can't believe we are almost HOME!

Much love,
Christy xo

Sunday, April 8, 2018

Rehab Days 2-4

Rehab Day 2 - Friday

Friday was a busy day. She had a total of four hours of therapy. She wasn't shy anyway, but man, she is getting a ton of practice talking. She had her teacher eval. She was really nice. And when she told Harlie she was a teacher, Harlie said, "I love school!" Then the teacher said that she would be working with her next week, and Harlie said, "I'm excited!"

It is "funny" how so many things make me so happy, so proud and so sad at the same time. This was one of those times. Here is a kid who loves school, despite the fact that it is very challenging for her. She has had to learn while hurting and recovering from painful surgeries and complications. Yet, she still loves it? Isn't that crazy? And she hasn't been to school one day of her 4th grade year. I am thankful for the homebound program and her homebound teacher for maintaining her love of school even though she can't go.

A different speech therapist (SLP) came to talk with her. I am so excited to tell you that she wore her speaking valve for at least an hour! With no problems! She told the SLP all about her dogs, their names and ages, her brothers, their names and ages. She asked for my phone so she could show her pictures. It was amazing! Honestly, I think she could tolerate a cap. But I don't have one with me. I asked her if she wanted to smell something and I told her to plug her trach with her finger and breathe in through her nose, and she did! So, that is promising!

Her PT did a series of balance tests on Harlie. She did pretty well, overall. She couldn't stand on one foot for even one second, but I know she will get there soon. She tested as a moderate fall risk, which was a better score than I expected.

Of course she had OT and TR, which is recreational therapy. They played games and she got out of the room for a bit.

A wound care nurse came by to look at Harlie's trach wound. It is getting better, but still has quite a bit of healing to go. Her wound care can be confusing. Every time a wound care person looks at it, they change our wound care regimen and the products we use. Each person has their own opinion, and of course, the wound is changing, so the way you care for it changes, too. It makes learning what to do feel impossible. At this point, I just do what I'm told.

Harlie received some gifts from my friend Susan. I've mentioned her before. Her daughter is Ainsley, and she was trached (she's decannulated now). She sent these great Troll gifts to remind Harlie to be the brave warrior princess she has been.

And it plays her theme song!

She also got some Legos from Cooper and a cute bag with some pens in it from my friend Robin, and her daughter, Faith. Robin sent me some gifts, too. Faith is 11, (her birthday is the day after Harlie's) and has Goldenhar Syndrome. She is trached, as well. I met Robin through Facebook years ago. They live in Colorado, but Robin is from northern Virginia. She was here for Spring Break a few weeks ago, and stopped by to visit me and Harlie at the hospital. We have wanted to get the girls to meet each other. I think it would be amazing. Too bad Harlie was in no condition for that a few weeks ago. Thanks for the gifts Robin and Faith!

Tom came up Friday afternoon. We hung out for a while and then he took me to do dinner.  Thursday night was rough since I had to get up so many times to suction her. So, Tom slept in the room with Harlie so I could go back to the RMH and sleep.

Rehab Day 3 - Saturday

She had a light day, only 30 minutes of PT and 30 minutes of OT. But, Tom played with her a lot and got her moving. His version of ladder golf was pretty funny.

He had her get on this thing and he rocked it like a horse. She had to use all her muscles to stay on.

She was laughing so hard. She said, "I can't get the smile off my face! Seriously!"

She cracks me up. She was exhausted after that.

We played some video games in the playroom.

By the end of the day, she was independently walking, refusing our help, and pushing our hands away. It is not her normal walk yet, but it is progress!

Tom slept in her room again, and I went back to the RMH.

Rehab Day 4 - Sunday

We took Harlie outside to the garden today.

There's no therapy on Sundays, so it has been a quiet day. The PT gave me a sheet with some exercises that we can get her to do. Tom got her to do them this morning. We got her another Lego set today (an RV/camping set) so she's been working on that for a few hours. Our spring family camping weekend is this coming weekend. We will have to miss it - again (her and I couldn't go on the fall trip, either). But hopefully, we will be home soon.

So, that's it for today. I'm anxious to see what a full day/week looks like.

Thanks for your continued support and encouragement!

Much love,
Christy xo

Thursday, April 5, 2018

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...


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

Monday, April 2, 2018

Post-Op Day 40. And Easter.

On Friday she was transferred out of the CICU to the Heart and Kidney Unit (HKU). While this is a GOOD thing, it can be a difficult transition - for me. I mean, they saved her life, so I can't help but become attached. I spent 37 days there, in a row, so I got to know lots of nurses and doctors and everything just became familiar. It was oddly comfortable, despite the fact that the CICU environment is intense and no place you want to live. Plus, motor memory... I've taken the path more than once to the CICU when I meant to go to the HKU, which is in a different wing.

Harlie's room in the CICU...

My view each day...

All moved out and ready for the next phase...

Just some of the nurses who came to see us off..



Erin (she was with us when Harlie coded)

Me, Erin, Liza and Maria
So, now that we are settled in the HKU, I realize how much quieter it is here. It is pretty amazing how I didn't even know it was noisy there.

Harlie's hair.

Before is in the CICU. After is in the HKU, after several hours of brushing for as long as she would tolerate, giving her a break, and brushing again.

I don't care what she says, it was worth it.

On Saturday, Mary Ann brought the boys up for the weekend. It was so wonderful to have them here.

Sally and her daughter Annabelle, were in town and they stopped by for a visit. We ended up going to lunch with them and that was fun. Forgot to get a photo.

The HKU nurses hid some eggs around the unit, and gave a bucket to Tom and Murphy to hide in the healing garden.

While out there Lauren, Harlie's nurse on the day she coded, came to visit. I know some of you were afraid I would be lonely if we didn't have any visitors. But we have had such wonderful nurses and they have been so good to me. I haven't felt lonely at all.

On Sunday, the Easter bunny ran into Mary Ann at church and gave her baskets for the kids. Crazy, right?

After we had lunch, Mary Ann sat with Harlie while Tom and I hung out with the boys. I've missed their crazy antics.

The weather was beautiful and we had a wonderful time together. It was so great. 

Before he left, Tom gave Harlie a pep talk about working hard at rehab.

She acts like she doesn't like them, but we all know that's not true. She was so happy to have them here.

They left Monday morning. Mary Ann took them to Pittsburgh for Spring Break.

Mandy came and did some PT.

And look who surprised us with a visit today - Dr. Derco, Harlie's pediatrician for almost 11 years! He retired in July, 2017. What a wonderful surprise!

He was also the pediatrician for Dr. Donofrio's kids when she lived in Richmond, years ago. Dr. Donofrio is one of Harlie's cardiologists. (She diagnosed Harlie when I was pregnant with her.) So, I took Dr. Derco to the cardiology clinic to see if she was working. Fun visits!

We were supposed to go to rehab today, but we hit an insurance snag. So, we hope for tomorrow. My guess is that if we get approval, we won't be able to go on the same day. They have to schedule the transportation ahead of time, and I'm betting that won't be able to be a last minute thing. So, if we get approval Tuesday, then we'll go on Wednesday. But, I've been surprised before, so who knows?

Yes, it is so frustrating. The sooner she gets to rehab, the sooner she gets stronger, the sooner we can go home. It will be six weeks on Wednesday! We are ready to be home again.

I took this picture as I was putting her to bed tonight. She is looking more and more like herself every day.

She has cried a few times, thinking about Rooney and Mabel. We miss them so much. Mabel won't even remember us! We only got 11 days with her before we left.

And she has cried, asking when she can go home. But, despite that, she still manages to be happy. And then she makes me happy.

So, that's it for this update. Hopefully this insurance gets worked out sooner than later, so we can be working our way home again soon!

Thank you for all the love, prayers and never-ending support.

Much love,
Christy xo