Adjusting at home

Monday, September 11.

So, I get asked how we are doing a lot. And I really wish my answer could be more positive. But we are struggling. And it makes me not want to leave the house. I don't want to be a downer, but I can't lie, either. Life is hard right now. Harlie is hurting, both physically and spiritually. And we are not good either.

While the days are no picnic - for me, the nights are far worse.

There is no one around for me to be brave in front of, so my true feelings come to surface. And I am so incredibly sad and I feel like I'm in shock.

The hum of the air compressor that goes to Harlie's trach collar sounds really loud. When I get up to suction her, I can't believe I'm doing it. I look at the suction catheter and I just can't believe it is in my hand again.

Her voice sounds like it is getting weaker each day. And she tried to tell me something at bedtime tonight and I couldn't understand her. She runs out of breath before she can get the words out. I had to say goodnight without knowing.

Tom made her laugh earlier and it made me happy and sad at the same time. It was so good to see her smile. But it was so sad to not be able to hear her laugh. And she knows. Over the weekend she asked me why she sounds funny. She looked in the mirror and then covered her neck with her hand and said it was ugly, she didn't like it, didn't want it and wanted to know when we can take it out.

She told Brandy all the same stuff and said she wants to feel normal again, that she wants to swim and have fun said something about friends, and then she cried. She's so sad. It kills me.

On Sunday I had to send a picture of her trach site to her ENT in DC. I brought him up to date last week. But on Saturday I noticed her site looks kinda bad. The skin looks like it is stuck to the tube and I am afraid to change it. We are going to see her local ENT on Wednesday and she is going to help me change it.

Anyway, he told me to tell Harlie that he is going to work hard to get that trach out as soon as it is safe for her. So, I told her what he said. She cried, but nodded like she understood.

Today I had to take her for blood work for the third time in less than a week (Wednesday, Friday and Monday). Needless to say, she didn't want to go. We are honest with her and tell her up front. I have tried every way possible to get her to stop fighting the sticks, but she still fights like crazy. Not that I blame her. After the last month she's had, of course she just wants to be left alone.

So, we went again today and I asked her if she wanted one stick, or two. I've tried this before, with no success. She answered one, of course. But she fought and fought and I had to squeeze her tight and put my legs around hers to keep from kicking. They got it, but quickly lost it, and didn't get any blood.

So she had to get two sticks. I told her that I knew she was smart enough to  get this. If she would just hold still and try to relax, it would be so much better. I've told her this every time.

I got back in the chair and put her on my lap. And she said no, cried and then held out her arm and looked the other way.  It was amazing. Finally! I just couldn't believe it. I am so proud of her! But, of all the things you should be proud of your kid for, this one kinda sucks. Can't help hoping this one is a game changer, though.

So far, we have seen her pediatrician and have appointments with GI, ENT, Pulmonary, wound care and our insurance person (a Medicaid thing) this week. I've talked to her physical therapist, speech therapist and her school - and it is only Monday night.

Tomorrow I'm going to try to make it to work. Then Wednesday and Thursday are super busy with appointments. And then back to school night is Thursday night.  And I'm going to try to go. But it is hard to be out and about with my conflicting feelings. I want to be the Christy I was five weeks ago. But, I'm not right now.

Okay, it is late and I need to go. Thank you for continuing to think of her. Even though we are home, there is still so much healing to do.

Much love,
Christy xo