Last night (Tuesday night) was okay, I guess. Caylee put fresh dressings on Harlie's wounds right before she left and about an hour later, they were soaked through. I took a pic (oh, you do NOT want to go through the pics on my phone) and sent it to a friend of mine who is a nurse and works at our local hospital. She thought it was too substantial to continue to treat at home and she encouraged me to bring her to the ED. I am not easily convinced to take her to the ED. So, my friend took her phone to the ED and showed the pics to the attending. He/she (I can't remember) said to bring her. This was sometime around midnight. I checked on her again and the bleeding appeared to stop. Her dressing was fine. So, I sent another pic, just so they knew I wasn't crazy. I told them I was going to wake up every two hours and check on her and if this dressing got soaked, I would bring her then. She was "fine" all night, her heart rate came down and was good all night. Her dressing was stable. I think at 5 or 6am, Tom woke me up to ask her about meds, I told him what to do and he told me her dressing was still white. So, he let me sleep. At 7am I got up to check on her and the dressing was SOAKED. I don't get it. Ugh. So, I told my friend that I was getting dressed and was taking her to the ED.
I also texted her pediatrician and she called ahead for me. I also texted our surgeon friend, and he told me to let him know when we got there and he would come see her.
Since we had a little warning that we would end up in the ED, I could tentatively try to make arrangements for the boys. On Wednesdays, they don't go to school. And Cooper had an appointment at 9am. Poor kid. At like 10pm he came downstairs and asked, "Mom, so what's the plan for tomorrow?" He is struggling with the unpredictability of our lives. I told him that I had no idea, but we would get him there and please try not to worry about it.
So, Tom took him and dropped him off and Blake (a friend of ours) picked him up. It really takes a village.
Anyway, I had to change her dressing because it was bleeding through and getting everywhere. I got her dressed gave her a dose of pain meds and took her to the ED.
I wrote all that yesterday, but the day got so busy that I couldn't finish. Now, my memory is a little foggy and I am really tired. So, trying to remember everything and then putting it in writing is a little exhausting. So, bear with me...
They wanted to get an IV, so the nurse used an ultrasound machine and tried her best, but was unsuccessful. I guess there were four of us or so holding Harlie down (including the surgeon) so Harlie certainly doesn't make it easy. The nurse got some blood, but couldn't use it for an IV.
The results of that lab work was very concerning. Her platelets were very low and so was her white blood count. The resident mentioned Aplastic Anemia and, unfortunately, I googled it. So, I was trying to keep calm and not freak out - but between the labs and her inability to stop bleeding, it made sense.
They ordered some blood for a transfusion, but they needed an IV to give it to her. So, they had to try again. I can't tell you how hard sticks are when your kid is off the chart anxiety and PTSD ridden. I told the resident that the same person who tried the first time, couldn't try this time. He needed to get the best they had and forget about that ultrasound machine. Just get someone who can stick a kid one time, successfully.
Well, this nurse did. So, they took more labs and those came back all within NORMAL ranges! WTH? Not that I'm complaining! I did NOT want her to have that. But, geez, way to scare a mom!
But, now we were back to not understanding what is going on. Now that I've had an entire day to learn it, I'll try to break it down for you.
She isn't bleeding like if you cut your finger kind of bleeding. It is old blood (very dark). So, she doesn't have a vessel that's actively bleeding. So the surgeon said he doesn't have to go into the surgical site and look for the source of the bleeding, thank God.
The bleeding is really more like old blood seeping out. They put in a drain line in her neck during surgery to allow the blood to come out. When it appeared to stop draining, they pulled the line out. I guess the line was a little smaller than the diameter of a pencil. It appeared fine for a couple of days. But, then blood started seeping out of that hole. So, the bleeding is blood that is coming from her tissues. That's what all the bruising is. And he thinks that is why the bruising is so much worse on the left side - because there is no way for the blood in the tissues to seep out. Whereas on the right side, there is an opening for it to escape.
He's afraid to put a pressure dressing on it, or close it with a suture, because then it will back up internally. Although maybe the pressure internally might stop it. It is hard to tell.
I asked him about the suture removal because it is very clear at this point that there is NO way in hell she is going to cooperate for that. He agreed. So, the plan is to take her into the OR on Friday (I think) so he can remove them, clean her up and get a good look at what's going on.
So, around 4pm or so she got moved up to the floor.
I forgot to pack food for her in my haste to the leave the house, and the hospital doesn't carry her formula. So, she went ALL day without feeding! I did have the tubing with me, so I was able to give her water. Once Tom got things settled at home, he packed a bag with some stuff for me and Harlie (including her formula) and brought it to me along with some dinner. It was the only food I had all day.
Things are a little more challenging now that Murphy has a job and is working more. We can't count on him to help with Cooper. And Cooper takes what is going on with Harlie a lot harder than Murphy. So, Tom left a little after 8pm. When he left he said good-bye to her and on his way out he told me that he thought she felt hot. Well, an hour later her nurse checked her temp and it was 101. Crap. And that is while she's on Tylenol around the clock.
So, the resident came to tell me that they had to get more blood cultures and she had to have another IV placed. Damn it. So, I told him the same thing I told the resident down in the ED. No ultrasound machine, send someone really, really good.
It was probably around 11pm or so, when in walked two people - with an ultrasound machine. For reals? I will say he introduced himself as a doctor from the ED. Well, that's interesting. I told him our experience with the ultrasound machine and that I wasn't loving the idea of trying it again. He said that the ultrasound machine was "his thing." This is where it gets so hard. I have heard people say things like that, then they end up sticking Harlie three times. I mean, I don't know these people, I don't know their track record. Are they really good, or what? And I can't stop them. I have to let them do their thing. But, there is still an instinct to protect your kid, and I didn't want them to have to stick her any more than necessary. Also, they do it and leave. I am the one telling her she has to do one thing after another that she hates or causes her pain.
He got it on the first try and he got a big vein. I told him good job. And then he said thank you for trusting me. Nothing personal, but man was that hard! They added Vancomycin (antibiotic) or her meds (along with Zosyn). Vancomycin can be hard on veins, so great job to him for getting a big vein!
At some point late in the night, Harlie's nurse asked me if I wanted her to bring in a bed for me to sleep in. Um, are you kidding me?!
Oh, I was so happy!!! You have no idea! The only time I've ever slept in a bed in a hospital is when Harlie was in rehab. So, yay for that. Although, according to my Garmin I slept for a total of 1 hour and 46 minutes, and not in a row. And, boy do I feel it.
Anyway, I had to change her neck dressing at 1am, 4am and then the docs changed it at 7am. All three times the dressings were completely saturated. Crazy. And she wasn't moving around, she was just sleeping.
Thursday
Tom came by in between appointments he had close to the hospital. He always brings energy with him. I am lacking in the energy department, that's for sure.
2 comments:
Buwahaha! I was literally wondering how long it would be before you were in receipt of that particular mask and was wondering if you would post a picture or not. Harlie has earned it! Seriously! Love that you have such great friends! It makes so much sense about the bruising on the side without the drain. That’s a relief really to understand. Hoping this stint at the hospital is short. Love to you all!
Thinking of you and Harlie.
Loving that she actually has that sleep mask now. She deserves to wear it. I'm sure those that know you and Harlie's story will find that mask totally appropriate. Hoping that as she heals, she can get back to her awesome unicorn sleep masks.
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