My brain is working on a different level right now, and it is much harder than you would think for me to write anything at all. Just responding to texts and messages is very difficult. So, I am sorry if I haven't responded to you.
Harlie is hanging in. This morning when I walked into her room, I did my normal thing. I said hello to her nurses, and put my stuff down. Then went to talk to Harlie. I held her hand and gave her a kiss on her head. Then, turned on the music and got myself settled. I talked on the phone with Tom and worked on my latest puzzle. After about an hour, her nurse came in and said that parents always wonder if their children know they are there. She said she believes they do. Then she said that before I arrived, they were about to give her more sedation meds because her blood pressure was hanging out too high. But, since I arrived her blood pressure came down, and they didn't have to give her more.
I can't tell you how much that meant to me. It is so hard to watch my sweet girl fighting so hard, and not be able to do anything for her. I hope she does know that I'm right here and that she's not alone.
The plan is still to take her into the OR on Friday to see how her airway looks. That will be day 16. Hopefully, her skin will have healed enough that they can wake her up and get her off some of these meds. Friday still feels so far away.
Every day is a constant juggling act with her blood pressure, pain meds, sedation, paralytic, vent settings, etc. It is stressful.
They get four people to help change her diaper (they've pulled both her Foley catheter and rectal tube to reduce infection risks) or move her in any way. I hold my breath the entire time.
I feel ike I'm stuck in a haunted house. Everywhere I turn, something scares me. My insides are so tight and it feels like I'm barely breathing. And I get waves of nausea.
Yesterday, during rounds they said something was growing in her respiratory cultures. So they need to gown up in her room, to avoid spreading it to other patients. They called Infectious Disease (ID) in for a consult.
Today, ID came in to talk with me. He was telling me about this growth, and said it is very unusual. So, I asked him what it is called. He told me he can't pronounce it. This is what it is...
Alcaligenes Xylosoxidans
See? Haunted house. From hell.
He joked that it looks like someone sneezed and hit a bunch of keys on the keyboard.
Anyway, apparently, it is pretty resistant to medicines. Haunted house. They see it mostly in immunocompromised patients receiving chemotherapy. But, she doesn't have a high white blood cell count, so that's good. They are thinking she may be colonized with it. That just means that it lives in her lungs, not doing anything for now. So, it feels like a ticking time bomb to me.
Opthamology comes in every day to check her eyes. Unfortunately, they want her eyes taped shut. The nurses were using gauze to cover her eyes and then taped that on. Her eyelids and cheeks were getting so irritated. But, they said that her eyes open underneath the gauze, so they can't do that anymore. Ugh. And today she said that her eye balls are red and fluid overloaded. Ugh. That sounds totally gross. Her nurse said she was positive a liter (meaning that more is going in than coming out).
Every time someone messes with Harlie, she gets mad (or she's in pain) and her blood pressure goes up. So, they give her meds. They wouldnt let the opthamologist examine her until they gave her something first. I love how protective nurses are.
Here are some pictures from the past couple of days.
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| Sweet girl! |
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| Trying to find tape that doesn't bother her skin. |
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| Me and Kristie (Tom's sister). |
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| Me and Maggie (my niece). |
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| The latest puzzle. A 1,000 piece Frank Lloyd Wright design. |
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| 1,000 piece vintage game puzzle |
My sister is here today. She brought up a wonderful basket of goodies from our work, KaneJeffries, LLP. Love them!
Did I mention that I changed rooms at the RMH? They had no repair date in sight to fix the hot water in my old room. So, another room opened up and I moved. It has two twin beds. But, at this point, not having to schlep my stuff back and forth to a community bathroom, trumps the bed situation. And I must say, I'm glad I moved. It is better to have a working shower for sure.
Last night, Maggie took me to dinner before taking me back to the RMH. Driving around is so stressful. I don't know how people deal with parking around here. Anyway, traffic was crazy and as we got to the restaurant I was thinking, "Ugh, where are we going to park?" Then, as we were turning the corner, someone pulled out of a spot - right in front of the restaurant!!! So, that made my day. Haha, it is the little things...
Okay, that's it for now.
Thank you so much for your continued love and support!! I promise you, it helps me stay strong and feel loved every day.
Much love,
Christy xo
3 comments:
Harlie knows you're there. She knows you're there and she knows she's loved.
Thinking and praying for you.
-A 19 year old Craniofacial Girl. Been there
As a mom I do understand and I would not wish having a child in the ICU on even someone I despise. My daughter at 15 was hit by a car and had a terrible/traumatic brain injury. We spent 24 days in ICU. From experience my daughter's blood pressure always went down when I was there. It would stabilize when I talked to her. Talk to her. Tell her about your evening and rest, about the walk/drive in...the weather...everything you would talk to her about if she was able to respond. Talk to her while you do the puzzles. Insist that every person who comes in introduces themselves and explains what they are going to for her. Yes she does not have the option to say no but at least she knows what is going on. Hearing is the one thing that will get thru. My heart goes out to you and your family. Your daughter, Harlie, is a survivor and has blessed everyone's life just as my daughter has...
Hi Christy, I am following yours and Harlie's story and a friend of Lynda's (the one and only). Harlie and you all have been in my thoughts and prayers constantly. I'm a mom, too. You are so well written. I'm glad you got a working shower! My boys are in Catholic school and the day that Harlie's trach (sp?) came out I was cleaning out my office and came across a little booklet of St. Blaise that my 5 year old had made. He is the patron saint of the throat, or "objects stuck in throat" and I had tears and prayed to St. Blaise that sweet Harlie recovers quickly, please heal her. I don't think these things are coincidence? Keep fighting and doing those puzzles. I am saying many prayers! So much love your way and to sweet Harlie. Xo Anne R.
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