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.

blood is thicker

I had my 6 week post partum check up this week.  All is well.  I am healing well, cleared for exercise, and good to go.  We talked a bit about my blood.  Back in the spring, Dr. T called me to tell me that I had a blood antibody that could affect baby.  It is a rare antibody, called the JKA antibody, and then told me to google it.  There isn't a lot of information out there on this specific antibody, but what I did find was from others who had it, primarily who had posted on baby and parenting forums.  This antibody, if it becomes quantifiable, can basically cross the placenta and attack baby's blood.  If that happens then the baby needs transfusions.

So every month I had to have blood tests to make sure the levels didn't get too high (they never did).  It also meant that any transfusions I got would need to be with blood with the antibody or the blood could be rejected.  The day before Graeme was born I had to have one more blood draw to type and cross check to make sure they had blood with the antibody.  They had two units ready to go.

Well, we all know that I need a few more units more than that, and they didn't have time to cross check that blood.  So I risked the chance of rejection of the blood, which I learned this week was a much higher possibility than anyone told us at the time.  Dr. T was in close contact with a doctor at the blood bank, as were all the doctors at Mercy.  Dr. T told me that it is yet another miracle that I didn't reject that blood.

A direct result of me receiving so much blood is that we have become avid fans of blood donation. Dan already was a donor, and his dad also donates regularly.  There has been talk of having a drive in my honor, which thrills me.  I even wrote a note to the trooper who brought more blood to the hospital when they ran out (turns out his wife works with Dan).

So, once again I have many other people to thank for keeping me alive.  Thanks for your prayers, and, if you donate blood, thank you.  You save lives.  If you don't donate, but are able, go donate a pint for me.

God was with you

After spending a significant amount of time (for a post-op) for our visit, talking us through the events of October 16, in the end, my OB said this: God was with you.  Through all of the bleeding that would not stop, through all of the methods attempted to make it stop, through all of the deliveries of more blood by the state's finest police, through all of the prayers of strangers, family, and friends, through all of the people who worked on me, God had a reason to keep me alive.  I don't know what that reason is yet, with exception to three kids who need their mommy, and a husband who needs his wife.  I feel I have a deep responsibility to pray prayers for others who may be in dire situations, because so many of you took a few minutes to think about me.  Thank you.  I also have a responsibility to live life to the fullest.

I did have a minor setback two weeks ago.  The antibiotics I was given in the hospital managed to kill off the good bacteria in my intestines, causing the bad bacteria to take over.  I became extremely ill and dehydrated.  When I called the ER, one of my surgeons was on-call and suggested I might have C. Diff, which I did, and fluids and a different antibiotic appear to have taken care of the problem.  It was a rough couple of days.  But overall I feel good.  I am getting out a bit each day, and am able to help with Slane and Hanna much more, which is good because Dan is back at work full-time.

Speaking of getting out, I have never felt so much a part of this community.  Almost everywhere I go, someone is glad to see me, and offers help, playdates, and general thanksgiving that I am walking among them.  I feel like a celebrity of sorts, but I take to heart that I (and we) are all cared for and loved by those around us.

I have one more thing I'd like to share.  I chose to have our babies in our small town because I love the staff in the maternity wing of the hospital.  They are dedicated and caring for everyone who walks through their doors.  They also took good care of my baby when I couldn't.  They kept a list of everyone who visited, they took pictures and saved them for me, and they sent pictures to Des Moines for me.  They didn't have to do that.  I know Graeme was cuddled and loved by the finest nurses and staff around.  And I have no idea who made it possible for Graeme to come and stay in Des Moines with me, but I will be forever thankful.  Holding him for the first time was maybe one of the most emotional moments I have experienced.       

How to give and receive

Intense, traumatic experiences pull stories and advice out of people. It's a mysterious force. While the advice and stories are still fresh, I thought I'd share the best of the advice we received with you.   (Names changed to protect the innocent.)

• Make a double batch. Marcy, our neighbor, shared that she will make a double batch of a meal - one for her family, another for the family who needs it.
• One word: therapy. Katherine, a friend who had an experience similar to ours. While she had sworn she would never go to therapy (she works as a social worker), the trauma she experienced caused her to reconsider her strict stance on therapy. Her husband also saw a therapist. The therapy gave each of them an opportunity to talk through and process the trauma that each had experienced.
• Be a yes man... Clayton, a friend who also had an experience like ours, recommended a month of live in help. At the very least, let people come and help and give them specific tasks. Keep it simple.
• ...but just say no to casserole. Jim, a former colleague, shared that his family continues to have a no casserole policy because his family received so many casseroles as meals following a death in the family. 

I would add this to the list: give your community an opportunity to help you through your trauma. The day that they transferred Sara out of ICU, I had a conversation with Alma, the mother of one of the Amish girls injured in an accident on the day of Graeme's birth. Eventually, it turned to the power of community to transcend the self and the tragedies we sometimes experience. Her community had helped her through many trials - births, injuries, and now through her daughter's accident. We agreed that community is a place where we both serve and are served, where we give and receive. Our experiences in ICU had taught each of us that it is much easier to give than to receive.

I chose to share our experience of Graeme's birth and Sara's challenges and recovery on Facebook, Twitter, and this blog because I could not keep all of the fear, anxiety, and uncertainty inside of me. I had to channel that energy into something useful. The response I received gave me comfort and strength, letting me know I was not alone. Every time I posted something new on Facebook, my phone chimed and buzzed dozens of times, like prayer candles flickering in church.

What have I learned from the past three weeks? Whenever someone is hurting, let that person know you care. No act is too small: whether it's cooking a meal, running a load of laundry, sending flowers, sending a text, or liking a Facebook post. We are not alone.