A Normal Day that Changed Everything
I woke up today and I could physically feel this day again. I could feel the weight of what had happened.
Finding words to write about this day is hard. Only less hard than having lived it because of some great therapy.
2 years ago today, my life changed, again.
Back in High school I found a sticker that I slapped on my car thinking it was intellectual and mature and I could 'sooo relate to this' at the tender age of seventeen. It said "The only constant is change."
Finding words to write about this day is hard. Only less hard than having lived it because of some great therapy.
2 years ago today, my life changed, again.
Back in High school I found a sticker that I slapped on my car thinking it was intellectual and mature and I could 'sooo relate to this' at the tender age of seventeen. It said "The only constant is change."
I'm not sure my seventeen year-old self could comprehend how much the forty year-old me has actually related to a two-dollar sticker impulse buy. I won't lie and say I've loved how often it feels like my life takes a sharp right turn into change, but it does seem that it has been a repetitive theme, and that in some ways I've been built for it.
So we've gone through the build-up, I've been following the bread crumbs, I've been just telling myself "If you hear hoof beats think horses, not zebras" through all of this. Tuesday the 19th rolls around and she's still swollen, she's still coughing, and I call up her PA and she has an opening the next morning at 8 a.m. and we take it.
We go in, she makes a face feeling her neck and seeing the "marble". We go over all of the symptoms and things she's been going through and talk about all the things it could be. She regrets that at this point she wants Bug to go back for more x-rays to confirm the pneumonia or check off it wasn't it, she also wants to get some bloodwork done to check for possible things like mono, or iron deficiency or a whole host of things. Just a reminder- Bug hates doctors, hates needles, hates all of this- but agrees, we need to figure this out.
The PA lets me know if we get over to the hospital right after the appointment most of the tests, except the mono results, should be back by early afternoon and she'll call me. I found out later that she'd only graduated and started practicing in January, we saw her the first time in March, and we are halfway through April. I'm pretty sure we traumatized her.
So we've gone through the build-up, I've been following the bread crumbs, I've been just telling myself "If you hear hoof beats think horses, not zebras" through all of this. Tuesday the 19th rolls around and she's still swollen, she's still coughing, and I call up her PA and she has an opening the next morning at 8 a.m. and we take it.
We go in, she makes a face feeling her neck and seeing the "marble". We go over all of the symptoms and things she's been going through and talk about all the things it could be. She regrets that at this point she wants Bug to go back for more x-rays to confirm the pneumonia or check off it wasn't it, she also wants to get some bloodwork done to check for possible things like mono, or iron deficiency or a whole host of things. Just a reminder- Bug hates doctors, hates needles, hates all of this- but agrees, we need to figure this out.
The PA lets me know if we get over to the hospital right after the appointment most of the tests, except the mono results, should be back by early afternoon and she'll call me. I found out later that she'd only graduated and started practicing in January, we saw her the first time in March, and we are halfway through April. I'm pretty sure we traumatized her.
So we go over, Bug takes it all in stride, and I give her the option to go home or go back to school for the day. She didn't want to miss a big rehearsal for the play she was in and really excited about, so back to school she went. I went home did the chores and ran around doing errands.
When she got home she was really worn out- she'd run the mile in PE and done the Spanish Run Around dance for the play- so she just wanted to have a nap. I encouraged her to do that and kept watching the clock, as it was creeping closer to 'closing time' and I still hadn't been called.
So I did what mom's do, I tried to keep busy and tell myself they just wanted to wait until they only had to call me once. I called my best friend and she told me to just call them if I was worried. I knew they stopped taking calls at 4:30 and it was already 4:15. So I called.
I got the receptionist, who told me my doctor was busy and put me on hold to talk to her nurse.
I was on hold for ten minutes.
When the receptionist came back on the line she told me that the results had come back but were under review and they couldn't tell me anything yet. I asked when I could expect a call and they said probably not until the next day.
Then I did the thing you are not supposed to do, the thing you really shouldn't do.
I went to her online chart and lab results, and then the internet.
All of it started freaking me out. I called my husband who told me not to jump to conclusions and that I didn't know what anything meant from a google search, and he'd call me when he got back home for the day from work since service got spotty on the drive from base to where he was staying. While I waited for him, I called my best friend. She also talked me down off the ledge, telling me it could be a lot of things with the combination of the numbers in her labs. She was helping her kids and needed to go and I was trying to finish something, I couldn't tell you what it was at all, but I took some breaths and was doing the things.
Then my phone rang, almost two hours after closing. It was our PA and the first words out of her mouth after confirming it was me were "I'm so sorry I don't have good news." She told me the labs were concerning and she'd been on the phone with Primary Children's Oncology. She asked if I knew what that meant, and I did. She told me they wanted us to travel to the larger hospital 45 minutes away for better/more in depth scans and some more labs. That they wanted us to know and be prepared for Bug to be life flighted and be admitted to the children's hospital. She was so sorry and if there was anything she could do, to please let her know. She apologized again, I told her there wasn't anything she did wrong and thanks and we make an awkward goodbye.
Then I just sat there, falling apart, and trying to breath.
It took me some several amount of minutes to call my husband and tell him my googling was probably right and that I needed to call my sister to help with my other two kids and how did I do this? How did I tell her.
He helped me calm down enough to call my sister, and ask her to come help me. I have no idea how long it was before she showed up. I'm pretty sure I sat in numb silence, I know she came into my house and downstairs to my office where I was before I realized she was there. I fell apart again for a few minutes and then she followed me back upstairs to tell Bug.
I've relieved walking to her door and the way she looked sitting on her bed a thousand times. I remember the look on her face as she looked up at me. I remember the way it changed as I told her we needed to go, and she needed to pack some things. I could see shock and denial and fear and all of it go over her face.
I know I helped her for a minute and then my sister helped her so I could grab some things. I was frantic and I did get some things for myself, but later I realized all the gaps in my own thing gathering.
We had men from our church come give her a blessing and I had multiple offers for people to drive for us, but as an unrepentant control freak, I knew I needed those forty-five minutes to just pull myself together and to have control over something. To spend the minutes with her, reassuring her, as much as myself.
The ER had been alerted ahead of time and so we were taken in for initial check in right away. We had a doctor come and talk to us in the waiting room within twenty minutes of showing up- He was odd, telling us he wasn't sure why we'd been rushed down here for things that could have been done at our local hospital. I knew- having had bad experiences with our local hospital with our kids and ourselves. I also think he might have been making a poor attempt at putting me at ease. When the doctors at the leading Children's hospital tell you to do something, there is always a reason. Needless to say, I wasn't sad when we were taken back to a room, he wasn't Bug's doctor and it was someone else.
Once we were back there, things moved faster than I've ever experienced in and ER. Bug was hooked up to an IV- and so mad about it I was letting her punch things to let it out- and we had the CT tech in the room within minutes. They wheeled her back and let me stay with her as they ran things. The Tech was a really nice and helping her laugh and joke as she wheeled us back to her room. She was just walking out the door when the doctor came back and said she was on the phone with the PCH's doctors and they wanted another more in depth scan and we were taken back again.
All of this to say, I was feeling more and more confident something was very wrong with my beautiful, amazing girl.
There was managing phone calls and texts and getting the hospital to call the red cross so my husband could get emergency leave and get home. They got her snacks and as we waited we were told she was going to be life flighted, they were just trying to get it worked out, but we were probably going to be waiting a few hours.
Like the rest of the day, once it sped up, it really sped up and within the next hour our life flight team was actually there and we were getting ready to go. Bug was relieved it was going to be an airplane and not a helicopter, and that since it was a plane, they were going to let me fly with her instead of having to drive up and follow her and her be alone.
Our life-flight team was amazing. The two guys, Toby and Chris- had her joking and laughing and generally put her at ease. They weren't the team we were supposed to get- it was supposed to be a pediatric team we would need to wait for- but they were the team we needed. Her stats gave them a scare when we were first loading so she got the "princess" treatment getting off, meaning she was carried off on her stretcher to the ambulance after we landed.
They also knew the hospital better than the new nurse or intern that met us in the emergency department and stuck with us until we were settled in our first PICU room.
While her first nurse Lauren got her settled, I was pulled out into the hall with a doctor to show me their initial findings and why she was not allowed to recline past a 40 degree angle and needed to be put on oxygen. He pulled up one of her CT scans and showed me that they detected a mass and between that and fluid pressing on her lungs and that if she laid flat, it risked causing her lung to collapse. He mentioned more tests and wanted to prepare me for the likely need for a chest tube and to try and help her rest as best she could. I asked about the likelihood we were looking at cancer. He told me they needed to do a biopsy first and to try and get some rest.
By this time it was nearly two in the morning. My husband had scheduled a flight to get to us as soon as we could in the morning and all I could do was try and sleep in a seat in our shared room while listening to our through a curtain room buddy struggle to breath as Encanto or Frozen or Moana got played on repeat while I watched Bugs stats since they weren't great, and just help her sleep as much as possible for the next few hours.
The world still turning on a day that was normal, until it changed everything.
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