The kids and I planned on watching movies yesterday, but only the educational ones. That's my Wednesday summer mornings plan at least. While we frantically picked up, got breakfasts, got ready for the day, made the coffee, the sounds of Super Why, World World, The Magic School Bus all echoed through the house yesterday morning while we met with our TA Waiver lady for an hour long meeting to review Chloe's needs and hourly care. She was sweet and said no thank you to coffee and we dove into the meeting. At some point Alan left for work. He was on a tight schedule needing to get office hours in before his scheduled 3pm-6:30pm nap so that he could work the night shift.
The meeting ended. Chloe coughed. We suctioned. We vented her belly. Her sats finally came back up to the 70's.
I called the home vent team to discuss things. Her belly is still restless although this new formula seems to be working better. But every time she coughs from secretions, it usually ends up in a desat down to the 60's. I tried my best to convince them we need to change to her new size trach soon, since that's what they said is causing the coughing and spit ups now...
I walked into the front room to see the kids watching Lego Friends. I got upset and lost it a bit, telling them they were only supposed to watch the shows listed, not just anything they wanted. It wasn't movie time, it was to watch something at least somewhat on a learning curve. I sent them outside to play.
I poured my coffee.
My phone rang. Nursing company. Issues with scheduling. Kids at the back door, begging for me to come outside into the bootiful weather with them. To run in the grass and push them on the swing.
"Sorry, guys, not right now. Mommy hasn't eaten breakfast and needs to take this call. I'll be out in a bit though."
Heavy heads, eyes down, but they said OK and ran off to play.
My phone rings. Vent team. More phone calls from nursing company. Hot tears welled up when we were told they really need to switch out our primary nurse one day a week. They're trying, but I don't think they grasp what this does to us in this moment. Our nurse practically sits by Chloe's bedside her entire shift these days because of the constant desat-after-coughing routine. Chloe's so complex right now. My heart is sore just thinking of the training we'll have to do to have one nurse one day a week. I wrestle with just doing it on my own, picking up another day shift, but that means the house waits impatiently and the kids can't play outside because I'd be right next to Chloe all day...
I make breakfast, at 10:45am. I pour creamer into my coffee that I have yet to touch.
I sit outside on the swing. Does this count as going outside to play with the kiddos? I call Alan and update him, choking through tears of frustration as we talk through all of this nursing stuff... The kids come join me on the swing, cuddling up on either side of my tears. They ask what's wrong and I gently explain that Mommy is just trying to find nurses to help with Baby Chloe. They want me to play, but I tell them we need to go start lunch. They ask why about the nurses. I explain that we're trying to find a nurse for Chloe's bedtimes. They beg to go swimming this afternoon. I explain that we might be able to put up the little pool this afternoon, but it's a big maybe. They ask why, and I find myself gently explaining to them just how fragile Chloe is right now and how we're all needing to help out. We're in this as a family and that means not always getting to do what we want to do so that we can all be there to help Baby Chloe out. My strong five year old gets it, and vows to help out Mommy more so that we can all help Baby Chloe. My three year old smiles, tucks her head into my shoulder and says, "I wuv you, Mommy."
Back inside to pick up from the morning. Eat my breakfast sandwhich at 11:20am. Put my coffee in the microwave. Forty-five seconds later the timer rings off, blending in with the sound of the sat monitor as I head to help the nurse.
More phone calls. Mounting frustration about trying to figure out how to help my daughter get this new trach placed.
The kids come in for lunch. They eat mostly by themselves; I join them with my lunch a little while later. They run off to play before I can really eat with them. I try to get a few designs made and up on my Etsy shop. Goal is design one new design daily if I'm not already working on a client design. I have a designer's block, and only come up with this:
My husband laughs over Google chat and makes a special request:
The kids are finally playing quietly and contently. Trust me, you don't mess with that beauty, so I keep designing, finally working on a quote a friend shared with me months ago that rings so true in this life.
My nurse opens the microwave to make her lunch, and carefully takes out my coffee and asks if I'd like it. I've moved on to a Diet Dr. Pepper.
After designing I make sure Chloe's squared away and doing OK so that I can go outside and mow. The kids play up in the "fort" on the swingset while I mow the lawn, the sun beating down on my weary soul. The fresh air and smell of newly cut grass mix and make their way into my senses and my soul finds a little peace. Amazing how mowing the lawn can bring a glimpse of rest and refreshment. Alan comes home for his afternoon pre-nightshift nap. I come inside at 2:56pm to see Alan still downstairs.
"I didn't want to go nap until you were done mowing incase Chloe needed help."
I get report from our nurse that Chloe had another (her 5th? 6th?) desat of the day, this one requiring oxygen for a few minutes while I was out mowing. She's good and calmed down now and about to nap, so I go back outside and start to blow up the kiddie pools and let the kids help fill them up. I went over the pool rules with the kids:
"Never EVER play around, near, or IN the pools when Mommy or Daddy aren't here."
Son, "Why not?"
Mother, "Because you could drown." {Explain drowning concept to 5 and 3 year olds}.
Son, "Oh, OK Mommy. I'll listen and obey and not drown. Why do I not want to drown?"
Mother, "Because it could be very, very bad and hurt you. You could die if you drown, but we want you around for a very long time and we would miss you so much."
Son, "Ok Mommy. I won't drown or die. Got it."
Oh son, that is what we pray for... {insert reminder to talk with your kids about pool safety here}.
To the untrained eye, the sights and sounds and splashes all excitedly yell SUMMER!!! The kids splash and swirl and swim and sing. I snuck away to the swing to sit down. I tried dipping my toes in, but they wanted every square inch for their watery mischief. Five minutes into my "relax" time, I receive a call from our equipment and supply company. I called this morning to ask for a few supplies even though delivery is next week, but Chloe's been rough on them and we're needing a few backup supplies. We forgot to go get them earlier when Alan got home. It's now 4pm. The kids got to swim for about 30min. I call them out of the pool because Alan's still napping for night shift, the company closes at 5pm, and our nurse leaves at 5pm, so now is our only window. We dry off to the cries of, "No, I want to keep swimming!!!!" I stop and explain to them how important it is that we do this as a family for Chloe and that she needs these supplies. I explain to a preschooler and a kindergartner the concept of of helping others even when it means our lives are interrupted, and feel the weight of all that means in this life...
The kids and I walk up to the equipment supply door.
Son, "Mommy the sign on the door says no guns, and no hot steam!" (No smoking sign).
With wet feet and wet ponytails, we head to grab supplies. I use speaker phone with the windows down to call the vent team again about other trach changing ideas. They can barely hear me but vow to return the call when our nurse is available. We leave with our supplies and head to Sonic for a much needed pick me up treat. My phone rings as I pull into the stall and the kids play and laugh from the backseat while Chloe's team and I decide to do the change here, xray here, and send xray there to be read. We order our drinks and head back home, walking in the door at 4:55pm. A fast trach care and down comes Alan just before our nurse heads home. He can't sleep so he comes down to help. He attempts some Daddy time teaching the kids Guitar Hero to Every Rose Has Its Thorns while I sneak into the back bedroom to take a call with our local pediatrician about this trach situation. I come out to cook supper. It's now 6pm. My husband has rehearsal in an hour. I try to rush and get supper while he takes care of the kids and practically continuously suctions Chloe. He eats at 6:34pm and rushes out the door to practice.
We make it through supper, through suctioning and Chloe finally settles in for a nap. We color. We do school books. We learn guitar, or try to as my son "gives me a guitar lesson". We read books. We snuggle. We do prayers. We do bedtimes. Alan walks in the door at 9pm as the kids finally go to sleep (after bathroom trips, water trips, and begs for snacks).
I sit down. Alan sits down. I design and breathe. He plays video games and breathes. We stay like this for the next hour and a half, him popping up to suction once in a while. A few words are exchanged, but mainly silence except for the hum of Chloe's fan and the sound of Alan's game.
It's the best conversation we've had all day. It's beautiful and relaxing and we both understand each other completely, even if no words are exchanged.
He begins night shift. I head for 6.5 hours of sleep before we trade. Lights out.
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