Day 9.

Day 9.  We thought we would be home by now, but Graeme had a bit of a rough night and needed oxygen for an hour or so.

It has been a long haul for us.  I know many people who have spent days in the hospital with their loved ones, watching them improve.  It seems to take forever.  I'm not sure I have ever truly understood how exhausting a hospital can be.  I think the hardest part might actually be trying to take care of the life that seems to pass by in the meantime.  We've been trying to take care of Hanna's ear infection issues, make sure Slane gets to and from preschool, get meals figured out and let people know how they can help.  And all from a distance or during our sporadic time at work trying to catch up there.

I miss my girls.  I miss watching them play.  I miss how they interact with their brother.  I miss spending more than a couple of hours at a time with Dan.  I miss normal routine.  I miss dinner together.

I know that soon this will all be a memory and I will catch up on sleep.  I will have a chance to reciprocate all of the wonderful things people have done for us.  I will forget the hospital cafeteria hours.  I will not find myself comparing hospitals.  I will not steal yet another chocolate milk from the nourishment room.  I will drink decent coffee.

I will have my whole family in one place.  Soon enough.

Graeme's breathing treatments

We've mentioned in our posts that Graeme has received breathing treatments. He gets Vapotherm, suctioning, and CPT (Chest Physical Therapy).

Vapotherm

Vapotherm - it's a humidifier...in your nose! This has helped Graeme breathe better, giving him a high volume of warm, moist, oxygen-rich air. His volume maxed out at 17L/min (an average adult breathes 6L/min) and his O₂ levels maxed at 40% (normal atmospheric oxygen is 21%). The air is warmed to body temperature, 37°C (98.6°F).
I want one of these - who wouldn't want one of these, especially on dry winter mornings.

Suctioning

To suck the massive amounts of mucus out of his body, there's a vacuum pump with a long tube and three attachments. One is for his nostrils, one is for his mouth, and one, with a long straw for "deep suctioning", is for his airways. he tolerates suctioning his mouth, dislikes suctioning his nose, and hates deep suctioning.

Chest Physical Therapy (CPT)

Graeme has received CPT, rhythmic drumming on his chest and back, to help loosen the mucus in his lungs and airways. (Learn more about the science of CPT here.) Here's what it looks and sounds like:

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He continues to receive all three, but we hope to wean him of the Vapotherm tomorrow. Ending this treatment is his next step toward coming home.

All I want is routine and a healthy family. Is that too much to ask?

I've felt like this guy this week:



Each of those plates and bowls represents a child, a spouse, a work project, a household chore, an item on the to-do list. In real life, it feels more like this:



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This week I have tried to make sense of why Graeme's hospitalization bothers me so much more than Sara's did. Our preparations before Graeme's birth helped us cope with the many complications we faced following his delivery. We would function as a less-than-two parent household for several weeks but we had a plan. My parents arrived before Graeme's delivery and were able to keep the girls on their daily routines, well fed and rested (Thanks, Mom and Dad!). We had each made arrangements at work so we could focus on welcoming Graeme into our family. I scheduled a couple of weeks away from the office with my teammates covering essential functions (Thanks, Dawn, Mallory, and Lori!). Sara's former co-teacher came back to be her long-term substitute (Thanks, Ralph and Brianna!). Family, friends, and church members coalesced and took care of our day-to-day needs - laundry, vacuuming, sweeping, dishes. We still have meals in our freezer and unused gift cards. (Thanks again, everyone! Your generosity continues to both humble and serve us.)

As with Sara's lengthy hospital stay, friends and family have walked the mile with us, bearing the load and helping out as Graeme suffers through this illness. On Facebook, friends articulate our frustrations, our indignation about why we need another trip to the hospital. As I type this, my parents are traveling the 600 miles from their home to ours so they can help us at home and the hospital. My mother-in-law cleaned the house one day this week. Friends from church lent a vacuum when ours died. Friends and family have brought and bought meals, run laundry loads, and helped watch and feed the girls. Physicians, nurses, techs, and respiratory therapists in Grinnell and Blank have done their best to diagnose Graeme's disease and treat it while easing his discomfort.

Friends have even sent messengers: Erik, one of Blank's chaplains, knocked at Graeme's hospital door Thursday morning. "Tom read about Graeme on Facebook and sent me," he said. Tom, a college friend of mine, went to seminary with Erik. We traded parenting stories before praying for Graeme's healing and peace for Sara and me.

Despite all of this care, compassion, and support, I feel unsettled. I want a script, a plan even though there is little doubt in how the story ends. Eventually, his little body will make enough antibodies to defeat the virus. He will stop overproducing mucus and his tiny lungs will work without the help of Vapotherms, oxygen tubes, or albuterol. He'll take a bottle again instead of an NG tube. He'll sleep in his bassinet rocker (thanks again, Dan and Jenn!) and, perhaps, start sleeping through the night.

Routine. I crave it, yet it eludes us.

Orange Cream Burst Chapstick

At some point when I was in the ICU back in October I realized that "my lips hurt real bad."  My sister happened to be there and handed over the chapstick she had in her pocket.  Orange Cream Burst.  Deciding that chapstick necessity won out over flavor choice, I accepted.  And used it the entire time I was in the hospital, every time slightly rolling my eyes at the orangeness of the chapstick.  When I got home from the hospital, I lost the orange cream burst chapstick and opted for the unflavored chapstick waiting for me on my dresser.

Fast forward 10 weeks.  Hanna had an appointment Monday morning at 8:30.  Dan decided to go into work early, leaving me with all three kids to get ready, and 45 minutes to do it.  I skipped breakfast and  left Graeme half fed in his jammies. then dropped him and Slane at daycare (for no more than 2 hours, I had said).  Hanna' appointment went well, and while there I called our clinic twice trying to get Graeme in, and got the recorded message both times.  I decided to drive over and see if they were actually closed, and they were open, just were booked full for the day and Dr. P wanted to leave by lunch.  When I explained that Graeme was not breathing well and hacking, they said to go get him and bring him in.

So I went to daycare and switched kids, thinking it would go quickly.  Dr. P didn't like the sounds of things, so he sent us to the hospital for a chest xray.  Then we went back and he decided to send us back to the hospital for admittance.  I texted daycare, asking if she could now keep the girls for the rest of the day.  She said yes.  I called Dan, and he said he would drop by after work.

My hospital experience left Dan much more traumatized than me.  I wasn't awake for most of it.  My mom used to drag me to the hospital with her all the time, so sickness and the medical process doesn't scare me or make me nervous.  But I didn't go through what Dan did.  I understood his reluctance to visit and didn't push it--then.

The rest of Monday and Tuesday Graeme seemed a little better but not great.  Dan stayed with him Monday night and I stayed Tuesday.  When Dan and the girls left, Slane almost cried when I said goodbye.  She remembers when I didn't come home in October.  Graeme was really fussy and coughing quite a bit Tuesday night and finally around 11:30 our nurse talked me into letting her take him to the nurses station so I could rest.  So I got comfy, changed into pajama pants, read a bit, then tried to sleep.  I had maybe been out for 15 minutes when she came running in with Graeme, her supervisor right behind, and they pressed the Code Blue running.  I sat up and watched several people come running into the room as they got him going on oxygen and the nebulizer.  He had been sleeping, woke up crying, and then the cries almost stopped.  I tried to stay out of the way and get my stuff out of the way.  There was some debate then about calling Blank, and Dr. P was called in.  By then it was 1 a.m. and he ordered another chest xray and bloodwork.  Also in that time Graeme almost stopped breathing again.  Dr. P came in and made the decision to call Blank.  Our nurse later said that our hospital could take care of babies, but with a mostly geriatric crowd, would feel more comfortable sending Graeme to people who only dealt with babies and could give him more concentrated care.

I tried and tried to call Dan, in between packing up, changing to jeans, taking things out to the car and moving the car to the ER parking lot.  The chapstick I had been carrying was close to empty, and when I found some of Slane's cherry chapstick in the car I grabbed it.  Finally I remembered that Dave and Julie were still in town and called Dave, asking him to please wake Dan up.  Dave came to the hospital first, and was surprised that Dan wasn't there, then he went to our house.  When Dan finally was awake and called me, he was hesitant to do anything.  He was going to get the girls to daycare and go into work.  When I told the nurses that, they said, "he'll call back in an hour and change his mind."  I thought that too, but understood his hesitation.  A little Post Traumatic Stress, anyone?  He did call back about 20 minutes later and said he would take the girls to daycare and then head to Des Moines.  A while late he called again, asking when the ambulance would be there, because he was going to follow us to Des Moines, while Dave and Julie stayed with the girls.

The transport team came, got an IV started, and wheeled Graeme to the emergency doors so they could get him on the ambulance.  When we walked out to it, I was surprised to see that it was no ordinary ambulance.  It was a badass ambulance that nobody on the roads would want to mess with.  I climbed in, directed the driver back to West Street, and we were off.  He drove 85 most of the way and we listened to WHO radio.  It reminded me of riding in the truck with my dad, watching all of the tiny cars around us.  I was secretly hoping he would turn on the siren and the flashy lights, but he didn't.

It was crazy at first when we got here.  The team was filling the nurses and residents in on what they did during transport, Dan came in, we were trying to answer all kinds of questions, and they were getting Graeme settled as well.

By yesterday afternoon, I was beyond exhausted.  It had been 30 hours and I had gotten that almost sleep, but that was it.  Our pastor drove up to visit, and I went back to town with her, picked up the girls and heated up one of our frozen casseroles while Dan stayed with Graeme for the night.  My mom had come and almost finished the laundry, vacuumed, and was working on dishes.  She is a good mom.  After dinner, Slane noticed me using her cherry chapstick and demanded that I give it back, so I did.  Then Slane went to a basketball game with Kirsten and Lydia, Hanna went to bed, and I worked to put away the laundry that had been piling up for two weeks.  As I was moving baskets around, I found the orange cream burst chapstick.

And here I am, back at the hospital, after restful sleep, using orange cream burst chapstick.

Graeme is about the same.  His nurse from yesterday was just in and said he looks much better.  He was struggling so much that it exhausted him.  Now, he is getting rest, and that is the most important thing.

Slane especially misses him, and I spent a lot of time explaining that he is sick but is going to get better and will come home soon.  I wish she could come see him, but we were encouraged to keep children away as so many kids on this floor have the same respiratory issues and we don't want to spread it.  We will all be together soon, and maybe I'll get new chapstick soon too.  
  

...Another post written from a hospital room.

Graeme, asleep at Blank Children's.

Graeme has RSV: a highly contagious respiratory virus that infects lungs and airways. It affects infants most severely. He started showing symptoms this weekend. He was checked Monday, which led to a chest x-ray and a hospital stay. Early this morning his labored breathing became difficult. Grinnell Regional dispatched the Blankmobile. Graeme checked into Blank Children's about 4 a.m. this morning. He's received several different breathing treatments over the past three days. The most effective is Vapotherm—a warm, moist, oxygenated airflow intended to stent his airways and air sacs.

Sara and I are so grateful for the thoughts, prayers, calls, texts, Facebook messages, and other encouragement you have sent our way. We're grateful for the talented, compassionate medical staffs at Grinnell Regional and Blank Children's and the excellent care he has received.

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I am not processing this well, and that's no surprise. (Sara will chime in with a post later this week.) All the poise I had with Sara's complications? Absent, mostly. His illness snuck up on us on a lazy, at-home weekend between Christmas and New Year's. At church on Sunday, I politely dismissed concerns from a mother of five (and grandmother of many) who thought Graeme's cough sounded serious.

"At his two month check-up, the doctor said the cough was just a little phlegm in the throat. He's fine," I said.

After Hanna's first ENT appointment (a prelude to tubes), Sara took Graeme to the doctor, just to be safe. I went on to work. I met them in his hospital room before picking up the girls from daycare and taking them to Slane's favorite restaurant, Pizza Ranch. Sara and I traded kids and places, spending our first New Year's apart in a decade.

Tuesday was Family Day at the hospital. The girls were (mostly) well behaved, bouncing off the walls on occasion. The nebulizer treatments and steroid shot seemed to help. Sara took them to dinner with our friends Dave and Julie. After dinner, we swapped kids and places. I got the girls down, did some housework, topped off the rink, and fell into a deep sleep.

At 2 a.m. I awoke to Dave standing over me.

"Sara called. They're transferring Graeme to Des Moines," he said.

This is the part where I lost my poise. Awaken from deep sleep (Sara called five times before Dave came over), I still was not ready to accept that Graeme was very ill and our routine (such as it is) would be on hiatus.

"I'll go in the morning. I have to take the girls to daycare. There are important meetings and preparations for work," I may or may not have said aloud. The internal monologue was unreliable.

The Blank Children's Pediatric Support Team vehicle. AKA "The Blankmobile"

I gathered enough of my wits to accept Dave and Julie's offer to watch the girls and get them to daycare. I packed a bag and thumbed out texts to family and friends. Dave drove me to the hospital to our car. I turned the key and hit the road, trailing the Blankmobile (Thanks, Phil!) down Interstate 80 to Des Moines. I had never seen I-80 so empty of cars and trucks. I arrived just in time to meet Graeme's team of doctors and their battery of questions.

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This is not the first post I wanted to write in 2013. I wanted to post pictures of our first Christmas as a family of five. I wanted to tell you about Dreamlites and Slane's A-Christmas-Story-esque quest for Santa to bring her one. (Spoiler alert: he did.) But here I am again—a downtown Des Moines hospital room with one of my loved ones hooked up to a myriad of machines that go "ping.”

It's so disheartening to see my child, eleven weeks old, struggle for each breath, unable to muster a cough that will clear the mucus in his lungs. Even with the breathing treatments, the air does not come easily. I wish I could do more that sit with him in sackcloth and ashes, holding the pacifier in his mouth as each breath sounds like the last sip of a milkshake. It feels unfair to both of us.