Tuesday, March 20, 2018

Post-Op Days 24 - 27

Sunday, March 18

Saturday night, after I posted my last blog post, Harlie made me very nervous. Her trach was not secure and you could see it was so close to coming out. And even though he stitched the wound above the new stoma placement, you can see the trach is migrating up. The stoma was at the lowest point of the wound. There is more wound under the stoma now.

The ENT resident came to look (he's seen her before) and after looking things over, he called one of the fellows. He ended up securing it with tape, for now. They are still working on finding a better solution. In the meantime, I'm trying to keep my PTSD at bay.

The feeling I get in my stomach when I think about all this is horrible. I'm trying so hard to not be angry that this happened (the emergency trach back in August). But it is getting very challenging. Being angry isn't helpful. But, damn, life is so much harder now. And it is heartbreaking to see her so miserable.

Saturday night/Sunday morning she spiked a fever of 103-something, she has a lot more secretions and her chest xrays lead the docs to think she has pneumonia. She is more puffy and miserable, in general. So, they put her back on another antibiotic.

Tom found a hair salon and if you can believe it, I got an appointment for Sunday.  So, he took me to get my hair cut and colored. So, at least I have that going for me.

She was awake all day on Sunday. And, the night nurse said she was awake a lot of Saturday night. Despite how tired she looked, we managed to get a few smiles. We could definitely see more of her wonderful personality. Man, we miss our amazing girl so much!

But, when we left that night, she cried sad tears. That was so hard. And it makes me cry just thinking about it. She said clearly through her silent sobs, "I want to go home." It was so, so hard leaving her that night. Sometimes, I feel like my heart just can't handle anymore. But, life doesn't give me a choice.

Tom and I went to dinner that night and he decided to stay the night and leave to go home early in the morning. It is so hard for him to leave when I/we are sad. He is still really good at making me smile...

We thought she would get a good night's sleep after being so awake for the past couple of days, but she awoke at 2am, and didn't fall back asleep. Apparently, she is totally fine hitting the nurse call button and asking for a movie, or to be suctioned.

On Monday, a nurse we haven't had yet, came by to chat with Morgan, our nurse and she told us both that she was walking by Harlie's room the other day. She just happened to look in, and Harlie got her attention, and asked her to help move her up in her bed. Then, in the process of doing that, Harlie told her she wants to be a doctor. Can you believe that?  She is so funny!

Tom left early in the morning on Monday. And I went in to the hospital early.  She started vomiting a bit sometime during the night. She had a nissan when she was about 18 months old and has only vomited a few times since. She is having serious GI issues due to the three weeks plus on paralytic and sedation medications, plus all the pain meds.

This has been an ongoing issue since surgery, of course. The team has been trying everything, and we just can't seem to get her any relief. So, I asked them if we should get an x-ray, just to be sure all is ok.  I'm so afraid something out of the blue is going to sneak up and scare us. They got an x-ray in the morning and then came again later to get another one, but a side view. I worried about it most of the day. I just knew they saw something concerning on the first one, which is why they got the second view. I try to tell myself to chill out. But, that is much easier said than done. I have my fears based on years of experiences, or PTSD. Turns out, everything is fine, she just needs a lot more help getting things moving along.

They tried getting her off the vent and switching her to trach collar a few times. Getting her on trach collar will really help her trach site heal. The vent tubing is just so unforgiving.

ENT came and changed her trach ties from the twill ties to the standard velcro ones. They put some protective dressing  on her neck before they put the twill ties on, so that had to be removed first. She was not cooperative at all. She was moving way too much and he couldn't do what he needed to do safely. So, they had to give her sedation and pain meds. Several times. But she still kept fighting. So, they had to give her ketamine. Twice. That girl! As soon as he was done and the ketamine wore off (fast acting), she woke right up and stayed awake all day, despite how tired she was.

Tired eyes!!
Speech therapy came by and tried a speaking valve (PMV). She tolerated it for about 10 seconds. She seemed totally comfortable and didn't try to remove it. I only got her to say "hi" but she was super tired. The only reason we didn't go over 10 seconds is because she needs oxygen and she was desatting without the trach collar.  I am very hopeful that when she is better and stronger, she will be able to tolerate it just fine. If she could go home with her voice, that would be amazing (she hasn't had a voice since the emergency tracheostomy in August).

Later that night, before I went to bed, I called her nurse to check on her. She told me that Harlie rolled over while sleeping on the vent and must have injured her wound again, because she bled quite a bit from her site. Ugh! This site is never going to heal if it keeps getting disturbed! So, the attending put her back on sedation for the night. ENT came by and packed the wound with some kind of dressing.

We need to get her off that vent asap. But, that is not up to us, it is up to her lungs.

Today (Tuesday) after they tuned off the Propofol and let her wake up, they put her on the trach collar. Then they got her to sit up on the side of the bed. Once her feet were on the side, she started to try to scoot off, to stand up. PT and OT  had her, so they helped her into a standing position. Needless to say, she is incredibly weak. Her whole body was shaking. She is amazing and didn't let that stop her from wanting to get into the chair.

So many docs and nurses stopped in their tracks when they saw Harlie in the chair. It is so wonderful to have them be so happy to see her out of bed!

She wanted some water and refused to let me help her hold the cup. She was very shaky, but did it without spilling. She is so determined!

She spent about four hours sleeping in the chair. She is wiped out today. She was off the vent for most of the day. Her nurse (Erin) asked her physical therapist to come up with a vest thing to hold the vent to her chest when she sleeps. That way she could move more without hurting herself.

This is what they came up with...

Pretty cool! She looks more comfortable, which is nice to see. So, good job, Erin! Her nurses (and docs) have all been so wonderful. To be stuck in a hospital, this one is a good one to be stuck in.

So, her recovery isn't consistent. In some areas she progresses, while in others she regresses. It is a crazy dance. Tomorrow will mark four weeks here. I feel like the hospitalizations aren't separate times. Instead, they build on top of one another. When we arrive, we are still carrying the last one with us. It is no way for a little girl to live. Yet she does, usually with a smile. Even when she's miserable. And she makes those of us around her smile, too.

Thank you for continuing to think of her, and our entire family. I promise you, we feel the love and appreciate it so much!

Much love,
Christy xoxo


Anonymous said...

Harlie, I think you'd be a great doctor :)

Annie said...

Hi there, I just wanted to mention that they have little O2 adapters that clip on the passey Muir valve so Harley could maintain her sats.

I pray for strength and peace and healing for all of your family <3

Unknown said...

Love to Harlie, and you & your family from mine.

AKRou said...

I am continually praying for and sending so much love to you, Harlie, the rest of your family, her doctors, and everyone that loves Harlie! Thank you for the updates... keep them coming.

Unknown said...

Sending much love and prayers of comfort and strength to all of you!

AnnKvedaras said...

Want you to know I'm thinking about you all and praying for all of you. Sounds like everyone there is taking good care of Harlie and you. Made me smile to see the picture of you in the snow. Looking at the snow has always made me feel happy. Hope it helps your spirits, too. So glad you are updating us. Lots of love to all.

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