Post-Op Day 5 - Sunday
Hi,
I'm sorry I haven't posted in a few days. There just hasn't been time. I've been writing what I could, when I could, so this post might be a bit choppy.
So, on Sunday, Tom got up early and went to the airport to pick up our rental car. I headed to the hospital and when I got there plastics was in her room. He asked me if Harlie had ever had an unusual amount of swelling post op before. No. He said that she does have more swelling than they expected. He wondered if one of her heart medications might have had a negative affect on her swelling. He also asked me if we put ice on her face after surgery.
Well, this is a real problem with Harlie's care. Because of her heart defects, she always has to go to the cardiac intensive care unit. But, the negative is that those nurses don't normally take care of craniofacial patients after major jaw surgery. So, they don't do that kind of care on a regular basis. Ice wasn't mentioned for a while (hours/next day, I can't remember) and they were not great ice packs. I really wish her care could be handled differently. There's got to be a better collaborative approach to her care.
Anyway, after they left, Harlie asked me for her tablet. I looked everywhere, but it was gone. I held out hope that her night nurse put it somewhere, or that it got mixed up in the linens, etc. I really wanted there to be a reasonable explanation that ended up with her getting her tablet back. But, that wasn't the case. Someone took it from her bed while she slept. Her room is right across from the nurses station (they said they put her there to keep an eye on her). So, it was an employee. The trash had recently been emptied, so it could've been whoever took her trash. Seems like it would've been worth asking who did the trash in that unit. Yet, no effort was made. They called security (what a joke). There are no cameras. Tom did the "find my device" thing and it was still in the hospital until late afternoon/early evening. Tom locked the device, he made it alarm, etc. Unless Tom and I searched the hospital ourselves, there was no way we were getting it back. I just can't explain how infuriating this is, how violated we feel, how incredibly awful this is for Harlie.
I know the easy solution is to replace it with a new tablet. A better tablet, even. But, it isn't that easy. Harlie gets attached to things. She doesn't go to school. She has no friends. She has no activities she's involved in (soccer, dance, etc.). When you have less in your life, what you have means a lot more.
A few years ago she had a tablet that was full. She couldn't put new apps on it and that was driving her crazy. Easy - get her a new tablet with more memory. So, Tom got her one and excitedly gave it to her. She took one look at it and said, "No. Take it back." She didn't want a new tablet. She wanted her tablet to work better. We tried several different ways to explain that it was full. I don't know why this was hard for her, but it was. Tom took a few days to think about it. He came home one day and said, "Harlie let's do an experiment." She was all about that. So, he put several different sized bowls and had her fill them up with water. He asked her to put more water in a bowl. She said, "It is full, no more water will fit." So, he reached for a really big bowl and he said, "See how much water it holds? This is like a new tablet...." And she said, "No way!" and left the kitchen. But, she thought about it and realized what she needed to do. She couldn't watch him transfer the stuff from her tablet to the new tablet. She actually sat there saying to herself, "Go to your happy place, go to your happy place. Daddy! I can't find my happy place!" Haha! The thought of letting go of her tablet was so hard for her - even though the new tablet was going to be better, and she was still going to have all of her stuff the way she wanted.
Now, her tablet is gone. Taken from her while she slept in a hospital that was supposed to be watching her, taking care of her and keeping her safe.
The realization that we had a new, huge problem that we couldn't solve, and that was going to hurt our child, was awful. There is no getting her tablet back. Period. It is gone. We will get her a new one. A better one. And she will have to get over it. She has no choice. We have no choice but to tell her. She keeps on asking if they have found her tablet yet. We don't have the heart to tell her the truth - that they aren't looking for it. They don't care. And whatever employee took it will continue to work there, with access to do it again.
We have had an amazing amount of people that think this was equally as despicable as we do and they have offered to help. My sister-in-law, Kristie, started a GoFundMe and collected just over $1,000. We received an Amazon gift card from friends. And so many friends have reached out to me personally offering to do whatever they could. We appreciate you all so much. I know it must not be easy to have to watch Harlie and us go through so much and you not be able to do anything. We just appreciate that you're there for us. However, if you still want to help in some way, you can donate to We Heart Harlie & Friends. This hospitalization cost us over $5,500. We Heart Harlie & Friends helps with costs like this, not only for us, but for other families, too.
Back to my story, her nurse came in to take out her IVs (the last thing they do before discharge) and Harlie said, "No!" I said what I normally do, "Harlie, don't you want to go home? They have to take them out so you can go home." Then she said, "But, I'm not ready." That is a first. Then she pointed to her face. I told her she can't stay in the hospital until her face heals. And I went on to say that we all love her and think she's beautiful and we aren't frightened or bothered by her swelling or bruises. That wasn't as comforting as I hoped. And she still protested and was extremely uncooperative, which made the nurse call for more help. So, after another nurse got there, I had to step away. Ugh, that was really hard and I had a really tough time keeping my stuff together. After they were done, I took her into the bathroom to get her dressed and she told me that she wasn't leaving without her tablet. Ugh.
That was the most unhappy, uncomfortable exit from a hospital stay we have ever had. And that's saying a lot.
We got in our rental and drove home. We had to stop three times. It broke our hearts to see Harlie hang her head, trying to hide her face from other people. The trip home was actually quite difficult. It is just very challenging to take care of a kiddo (who still needs a lot of care) in a moving car. We had a bag of prescriptions and there wasn't Tylenol or Motrin in there. Luckily Caylee had packed us some, but it was in Harlie's suitcase, which was under everything in the back of the SUV (including her wheelchair we had to break down to fit in the car). So, Tom had to take everything out, open up her case, dig out her home meds, and then put everything back in. All the effort and stress just adds up.
Anyway, we made it home a little after 8pm.
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| Oh, our sweet girl. |
That night was a rough night. We set our alarms to get up to give her meds on schedule. I took the 12:30am one, and Tom took the 4:30am one. After I got up and gave her meds, I couldn't go back to sleep. At around 1:30am she was coughing and sounded like she needed suctioning. So, I went in there and she said, "I keep hearing loud noises." She wanted me to hug her, so I just laid with her for a few minutes until she seemed settled, and then I went back to bed.
I don't like to cry and I've mentioned that several times in my blog. But, I couldn't help it. In that moment, I hurt so, so bad. And I was so afraid. What if her hearing was damaged? What was happening in her head? And I thought about the suicide of the CEO of Longhorn Steakhouse, who took his life after experiencing unbearable tinnitus. My thoughts just ran away and I was so, so afraid of her being in pain that we don't know, understand or can fix. And, all that lead me to an overwhelming feeling of regret. Complete and utter regret. I did this to her. And I hated myself. I woke Tom up, which I felt terrible for doing since I knew he needed his sleep. But, I knew he'd want me to anyway. It was a really hard night. Once I finally fell asleep, I had a dream that I went into Harlie's room the next morning and she looked totally normal, the way she used to. And I knew I was dreaming.
I keep trying to tell myself that this is all temporary and she will heal and everything will be great. But, it doesn't change how hard it is right now.
Monday was a busy day of just getting settled. In the early part of the day Harlie came downstairs to work on her Lego set. While sitting there, blood kept dripping off her chin and it was annoying her. It was annoying her enough that we were able to convince her to let us clean her up. So, we cleaned her wounds as best as we could. But, since her ear is still bleeding, it drips down and then makes the whole wound site bloody, which then dries and becomes a big, unhealthy mess.
Tom has a client who is a plastic surgeon. He reached out to Tom and asked him if we needed anything (like suture removal). So, I called him and gave him an update on Harlie and what we are struggling with (her bleeding from her ear, trying to keep her wound sites clean, etc.). He asked me where we live and said he would come by and take a look at her that night! How great is that?! As much as I feel beat up by the universe, we are so incredibly lucky to have so many wonderful people by our side.
So, he came by and looked in her ear and said he could see her ear drum, so that's a relief! He also had a tool that we don't have, that helped get the caked dried blood off. He was able to get her cleaned so he could see her sutures. The ones under her chin (that go from ear to ear) look good. Her surgeon said sutures should come out 7-10 days after surgery. He took a look at them and said he thinks they need till Wednesday or Thursday. And he said he would come to our house to do it! Yay!
A few minutes after he left, Harlie had blood dripping down her face. I took a picture and texted it to him. The good thing is that you could clearly see that the source of the bleeding is not her ear, it is the top of the incision in front of her right ear. And her drain site in her neck is bleeding. He told me to apply gentle pressure for 20 minutes. I said, sounds easy. Haha! So, I did and we all went to bed. I did the 1:30am meds and Tom did the 5:30am meds.
I woke up to Harlie standing in front of me covered in blood. Yeah, not a fun way to wake up. She wanted to show me her pillow (which was also covered in blood). So, I put her in the tub and got her all cleaned up. I had to empty the tub several times because of all the blood. It was awful. And it wasn't fun for Tom or Murphy who had to take lukewarm showers after I used all the hot water. Oops.
I put her on her bed and had her get on her left side and I held gauze on both the neck drain site and incision for like 30 minutes! Caylee arrived to work and she took over and held it for like another 30 minutes. It will NOT stop bleeding. We put gauze on it and taped it as tight as we could. But, it just bleeds through.
So, I sent some photos to her surgeon and he said she might need some more sutures. Ugh. There is no way she is going to be cooperative for that! So, I'm not sure what I'm going to do about that.
All day today she was really quiet and hardly spoke a word. I wondered if she was just feeling really down. Her swelling is no better today than yesterday. And, honestly, her left eye looks more closed than yesterday. It is really hard to look at. I was thinking that the bath and holding her sites for an hour just stressed her out or wore her out. But, into the evening, she made us worry more. Her heart rate is elevated for her, she was unusually out of breath after walking up the stairs. She's been on Motrin/Tylenol around the clock for a week, so I'm afraid that would mask any fever she might have. And, at this point, she's been bleeding continuously for well over 24 hours. Maybe she's anemic?
So, I spoke with her pediatrician and she said getting some labs would be a good idea. So, we are going to watch her really closely tonight and evaluate in the morning. I might be taking her to the emergency department in the morning. Between her needing stitches and blood work, the ED is the best solution. I just really don't want to take her at night if I can help it.
The good news is that she got her new tablet today. We ordered her a new one while we were driving home from Boston. Yes, we got her the latest, greatest and nicest tablet we could get. I guess not having a tablet at all (and she now understands that she is not getting her tablet back) made her much more agreeable to the new one. She figures things out in her own time. Honestly, Tom and I are shocked (and grateful) that she handled it as well as she did. Tom was able to download most of her stuff from her old tablet onto the new tablet, so it had the same screensaver for example and we ordered her the same cover that she had. She seems grateful to have it. So, thank you to all the good people who contributed to Kristie's GoFundMe and donated in other ways. We are overwhelmed by your kindness and generosity!
Ok, I have to wrap this up. Thank you so, so much for being there for us. I have so much more I want to tell you about (and thank you for) but it is late and I know I won't sleep much tonight, so I have to stop writing for now.
Much love,
Christy xo
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