Post-Op Day 2

10pm - Thursday

For the most part, today was okay. I forgot to mention that Tom had to leave last night (Wednesday night) to go home so he could work today (Thursday). I know he has to work, just part of the deal with a 100% commission job. But I loved having him with me for two solid days during this hospital stay. It’s hard to explain, but it just makes things easier to handle when he’s with me. Plus, he had to take the car.

So, this morning (Thursday), Melissa took me to the hospital and luckily, some friends of Melissa’s helped her out with her daughter so Melissa could sit with me at the hospital for a little bit. When we got there, Harlie’s eye was worse. It was turning black. Still hard to look at. It takes me a few minutes to get myself together and get used to how she looks. It’s still pretty shocking at first. Melissa is great with it because she is a post-surgical nurse – and she knows that kind of stuff. Harlie kept on rubbing her bad eye. It hurt my stomach to watch her dig at it. For a little while this morning, I just didn’t know how I was going to take care of her when we brought her home. I have to take care of all her incisions three times a day. Ugh. I don’t like even looking at them, much less messing with them. And three times a day?!?! For weeks!!! God give me strength!

But I got to hold her. She sat up in the bed and, oh boy, she looked rough. But holding her helped me (and her) a lot. They said that sitting up would help with the swelling. Her head is still bleeding a little, but hopefully that will stop by the time we bring her home. Anyway, I held her for most of the morning and then when I got back from lunch, my mom was holding her. I would say that she was able to be held for most of the day, which is great.

One thing I wasn’t prepared for was the smell of dried blood. Not pleasant. And it’s coming from her mouth. Her nurse today was awesome and called the surgeon to ask what she could do about it. She used some sponges on a stick and wet it and then cleaned what she could get to. Then suctioned out the water. Wow what a difference that made. Her lip is still very swollen, but at least it was finally “clean”.

My mom and sister came down for the day. When they got there, Melissa and I left for lunch. Then she dropped me off back at the hospital and for the rest of the day, we just switched off (because they only allow two visitors at the bedside).

Later on, her nurse showed me how to clean her incisions. All of them look a lot better now that she was able to get off all the dried blood. So, I don’t feel as afraid as I was about cleaning them. I’ll be fine. And it didn’t seem to bother Harlie at all, so that will make it easier for me, too. Luckily, during one of our switches when I was out of the PICU her nurse and the respiratory therapist changed her trach ties - they had not been changed since Monday night (and they get changed at least once a day normally - Ewwww!!!!). I was not looking forward to doing that, I can tell you. The trach ties are WAY too close to her incisions under her new chin for my comfort. But they said she did great and didn’t seem bothered by it, so I should be fine doing it next time. They also gave her a bath and washed her hair. That had to make her feel better.

Throughout the day, the swelling in her eye seemed to go down and at the same time it got blacker. And her incisions around her jaw are starting to bruise – along with her right ear – even on the inside, which is strange looking. But, everyone kept on coming up telling me how great she looks (which sounds really weird – you know, with her looking so bad and all). But I know they mean compared to what she could look like – clinically, I guess. So, that’s good.

Oh, and earlier, when the nurse called the surgeon, she told me he asked a few questions about how she was doing and said that if I was comfortable, I could take her home – TONIGHT! I was like, WHAT?! Is he CRAZY?! And for the first time – in all her many hospitalizations – I said, “no way”. She needs another night here, I need another night with her here and we need some time to prepare Murphy for her arrival and appearance. So, Tom talked to Murphy tonight, showed him her pictures and he will leave in the morning and we’ll be on the road before noon I expect.

They kept on saying that she would be transferred to the “trach pod” as they call it. But at 6:30pm, they told me that she would stay put in the PICU and be discharged in the morning from there. Which I was happy about.

In the afternoon she signed her first sign since surgery, “night night”, which is a good sign (that she wants to communicate I mean). As it got closer to 6:30, she was resting comfortably. I can’t remember if I explained or not, but they kick the families out of the PICU between 6:30 and 7:30 for shift change. Right at 6:30, she woke up suddenly and started crying (like she knew I was about to leave or something). She wanted me to hold her, so I let her sit up in bed and she went crazy trying to get in my arms. Then a different nurse (a guy) came to help (our nurse was very busy with the baby in the next bed). He said he would hold her and took her. Well, she was NOT happy about that and reached out for me. Then she signed “mama”. Oh, my goodness. Leaving her was the hardest thing EVER! I asked him if I could just hold her for a minute to help her calm down and he said NO! Jerk. And we had to leave.

Well, overall, even though the morning was rough – I left the hospital feeling pretty good (well, other than leaving my sweet girl crying for me, which was pure agony). I called the PICU after my mom and sister dropped me off at Melissa’s and her night nurse (the same one she’s had every night, which is great) told me that she was resting comfortably. Anyway, I definitely feel more confident that I will be able to handle her care now. And I have a feeling that she will look better in the morning, and every morning thereafter.

Oh, and the anesthesiologist that I loved came by to visit Harlie this morning. I was shocked. That has never happened. I loved him. So, I got a photo with him. He really made me feel better about this operation and that’s a big deal to me. It was nice to be able to tell him that.

And now, after writing this and thinking about the day, I’m excited about tomorrow. I feel like today was a big day for me. I feel like I made a lot of progress. And it feels really good to be excited about taking her home.

Oh, I uploaded some more photos. Thanks again for all your messages. I really appreciated reading them when I got “home” tonight. It gives me something to look forward to each night. Thanks for doing that.

Take care,
Christy

6am - Friday

I just spoke with Harlie's night nurse and she said that she is awake and signing like crazy. She said that everytime she goes near Harlie's bed, Harlie reaches out to her to be picked up. She's such a snuggle-bug! She said that another nurse knows a little sign language and was telling Kasey (her nurse) that she was signing "mama", "daddy", "please" (my girl knows her manners!), and "baby" (when Kasey showed her one of our family photos at her bedside). I suppose she was talking about herself. And she said she was hitting her fist on her chest - the sign for "Murphy" but of course, the nurse didn't know that one.

She also said that she hasn't given her any pain meds since 9pm last night and she's doing fine! Well, I can tell you - I won't be going that long between doses! I told them yesterday that I would need to be briefed on what is REALLY too much pain meds (you know the label is always so conservative). And if I couldn't give it to her, I would have to give it to myself! A lot for you, a little for me....

Anyway, I woke up very early this morning (around 4ish) because I am just so darn excited. Oh, and the nurse said that she can open her right eye now! YAY!

Well, just wanted to share the good news that Harlie is communicating and seems to be doing well.