Hi. Well, as I said yesterday, we finally got in to see Harlie at 7:35pm in the CICU. She was miserable. No matter how many times we have been through this, it never gets easier. In fact, I would argue that it actually gets more difficult. I've said before, that every time we come back to the hospital, I'm bringing all the other stays with me.
If you know Harlie personally, then you know that she is not an affectionate person. She is definitely NOT a hugger. But, post-op, she wanted to hug. She was complaining of a lot of pain. So, her nurse gave her Dilaudid and that seemed to calm her down. By this time, it was well after 8pm and Tom and I had not eaten dinner.
While we were waiting to see her (very irritated) Tom and I were talking about how hard this is on parents.
1. We traveled here - so we are starting off a hospital stay tired from the stress of traveling for medical care. I haven't even been able to tell you that last week we had to say goodbye to Tom's step dad, my father in law, and the children's grandfather (PapPap), Cal Bowser. He was a great man and we will all miss him very much. We went to his service in PA on Thursday and Friday. While we loved being able to see Tom's mom and sisters and family (and meet a lot of their friends), it was definitely a very sad, emotional few days. We drove home on Saturday. On Sunday we unpacked, did laundry and then re-packed for our early flight Monday.
2. You can't eat when you get hungry. All meals are eaten when time allows you to do so. On surgery day, they took her back around 10:30am, almost two hours later than expected. By that time, the cafeteria is closed for breakfast and preparing for lunch. So, we found a snack in a fast food kinda place downstairs. This is where we sat for two hours (through dinner time) waiting to go in to see her.
3. You spend all day sitting in rooms with other people in chairs that aren't comfortable. Or in our case, walking around. If you know Tom personally, then you know that sitting around waiting isn't a skill of his. I convinced him to walk to the local Athleta store (3 miles away) since I had some credit there. I bought a pair of pants that are comfortable, but look nicer than tights. I'm choosing to be excited about my new find. Haha! We were pretty tired and didn't want to risk having to take too long to walk back and miss the surgeon. So, we took an Uber back.
4. Worrying - being concerned about your child's well being takes a lot of energy.
Add all of those things up together and you can't help but be exhausted, hungry and grouchy. All of this happens BEFORE the recovery even starts!
Walking into the hospital this morning, I just felt sick. Doing all of this again, over and over (without ideal results) is like the worst groundhog day ever. I said to Tom, "I don't want to do this to her again. I'm done with jaw surgeries". Tom said, "Well, in our defense, we didn't want to do this one." Truth. Haha!
She is okay today - she is definitely hurting.
The anesthesiologist who had her yesterday came by to check on her. He told us that she signed something when she woke up in the OR. None of them knew sign, so they got out their phones and started googling. They learned that she was signing "hurt". So, they gave her more pain medicine. I love when she can communicate her needs and I love it when people try to understand her, even when it takes more effort. He also said that they were able to understand that she asked if the doctor fixed her left ear lobe. They told her yes. Cute. Its the little things. Of course after it heals, we will have to pierce that lobe again.
She got moved to the step down unit today. This step down unit is pretty impressive so far. They are being really good about managing her pain. I was so tired today that Tom made me take a nap. I fought it for a second, but when he put the couch into a bed, went and got me a pillow and sheets, I had no choice. Haha!
While the nap was good and very much needed - it is not the solution to my kind of tired. I am struggling this time around. I hate to say it (because I am so afraid I will be punished by some greater power) but I am so tired of being inside a hospital. I am tired of having the same conversations with doctors and nurses. I'm tired of watching Harlie go through too much crap. When she is miserable, I am miserable. When she hurts, I hurt. She breaks my heart. She's already asked me when she can eat. What she means is when can she chew up food and eat it like most people do. Somehow she thinks this surgery was to advance her abilities. But, it wasn't that kind of surgery. The reality is that I don't think she will ever be able to chew food up and eat it. Her teeth don't come together like that. I wish that wasn't a goal of hers. I wish that she would come to the conclusion that she can have a fine, happy, good life without eating food like most people do. It breaks my heart, and that makes me so incredibly tired.
I spoke with the infectious disease doctor today. She is adding a short term antibiotic to be on the safe side. We are going to leave her on the doxy for another 4-6 weeks, also to be on the safe side. She said that this infection is so rare that there is no protocol for it - we are just making it up. She said she found a few articles. Isn't that crazy? I don't even know what it's called. A shitty deal, that's what it should be called. Anyway, I pray that this infection is gone for good.
Well, I'm signing off for today. It is 8:30pm and we still have to walk back to the hotel.
Thanks for all the love.
Christy xo
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