Last night (as it is now 2:30am) I went to change Harlie's pressure wound dressing, and I immediately noticed that we likely had a problem. Her whole left butt cheek was swollen!
All day she had a low grade fever. She ranged between 99.2 to 101.2. While this would not send off alarms for a relatively healthy kiddo, low grade temps mean a lot for her. She has had many serious infections with little to no fevers. So, I was watching her closely. I had even been communicating with her docs about it over email.
I had already sent this pic to my friend Jennifer (who is a nurse) and told her that Harlie makes no sense.
Thirty minutes later I found the most likely reason why. Clearly, something was brewing in or around her pressure sore. I then sent a pic that showed how swollen she is to Jennifer. She just happened to be at work and walked over to the emergency department. She showed the pics to the doctor there and she said I should bring her in immediately.
I did NOT want to do that. But I had no choice. We still don't know how deep this sore goes. Who knows what is going on under there?!
I guess we got here about 10:30pm. Jennifer hung out with us for a few hours. At first, she was fine.
They gave her an IV, which was horrible. She kept saying she wanted to go home. Oh, girl, you and me both! I feel so, so bad for her. I wish I didn't have to ask so much from her. It is really over the top for an almost 11-year old. And we've been doing it her entire life!!
It is now 3am and she just had a CT scan.
They are admitting her, but there are no rooms available. So we are camping out in the emergency department. I just realized I'm hungry and all I found in my bag were some gummy bears. Desperate times call for desperate measures.
They are starting her on IV antibiotics (Clindamycin) now. Wound care is under the plastics umbrella, so they are supposed to come see her tomorrow, I mean today.
It is now 4am. I have told the story of how we ended up here tonight to seven different medical professionals. And I am officially tired. I am going to try and get a few minutes of sleep.
Seven minutes later...
Well, so much for that. They just came to tell me that they have a room for us and we should be moving in the next 15 minutes or so.
We are now squished in a shared room. Sometimes, when I'm feeling really run down, negative thoughts creep in my head. I can't help but think the Universe must have it out for us.
It is now 5:45am. And I don't know how I will continue to ask Harlie to hold still, or let the doctors look, etc. She is looking at me like I've betrayed her. I'm so tired.
They asked me, "Does she normally cough this much at home?" We have only been home for 12 days with a "new" trach - we don't have a normal yet!
The monitor won't accept that Harlie's numbers are lower than typical. It wants to alert us (by alarming over and over again) that her sats are too low at 84. The nurse has tried to change it. You won't believe it, but something is wrong with it. Crazy, right? It looked like she had to bring an IT guy over. He didn't have any ideas. So, it has alarmed every 4 minutes. I can now reach over my head and hit the silence button without looking.
Must dig deep for strength.
It is now 7:45am, and I managed to get some sleep, while sitting up in a chair that I can't figure out how to recline. I feel like a new woman!
It is now 8:30am and I have talked to so many people in the last 45 minutes. Harlie is done being looked at and touched. Jennifer just came by and oh my gosh, she just told the team they need to limit the number of people who come to see her to essential people only! No extras! Yay!
Still waiting on plastics...
Thank you for continuing to think of her, and the rest of us!! You must be exhausted, too!! ☺
Much love,
Christy xo
3 comments:
Heartbroken to hear what you and Harlie are going through again, but you still manage to make me laugh with your humor - new woman indeed!! Hang in there. ;)
Dear Christy & Tom,
Sending prayers for healing to sweet Harlie and loving thoughts your way.
Christy, you may be questioning how many times you have been asked to "pretend to be brave". I have faith that you will be able to "dig deep" and the love in your heart for Harlie will help drive you to muster up the strength needed to indeed be brave for your little girl. You are a very special woman; and you were chosen to be the Mommy to an "extra" ordinarily special child for that very reason.
With much love and prayers for healing, comfort and understanding.
Oh my god! Really enough already! For Ainsley the IV is always the worst part. I am so sorry you are back in the hospital. They HAVE to do something about that monitor. You are going to lose it if you have to keep "snoozing it". I will be praying that this is a short stay! Love and hugs!
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