Rosie Update
tl;dr— Rosie has made progress since 9/15, a little each day. She is still on a ventilator in the Cardiovascular Intensive Care Unit (CVICU) at Arkansas Children’s Hospital (ACH). Every day is different in terms of progress and setbacks. Overall, Rosie has shown progress. Most recently, she needed a lot more support than we expected. We continue to follow her lead and trust the team caring for her. This is a really, really hard time for us, and we are grateful for the support of those checking in and helping.
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It has been hard to know how to update you about Rosie for the last couple of weeks. ICU life is exhausting, and our girl is recovering from tremendous trauma to her body and mind. Nevertheless, it is important to me to provide some information for those who have been asking, praying, and thinking of our family.
When Rosie was admitted to the CVICU on September 15, she was extremely sick. Septic shock came on faster than we could have imagined. She was barely breathing, had a very weak pulse, and looked pallid and blue-lipped. Even at her sickest before her heart repairs in 2015, I never saw her like this. We were terrified.
That day dozens of members of the ACH ER team saved her life and transferred her to the CVICU team for continued care. We spent most of the first year of Rosie’s life in the CVICU, so the nurses, doctors, and respiratory therapists on this floor know her better than anyone.
It’s awful to be back, but I cannot overstate how much we trust this team of people.
They have given us extraordinary care since that day, but it has not all been smooth sailing. Although, it never is smooth sailing in an ICU setting.
Every intervention in the ICU comes at a cost, whether it’s side-effects or additional risks.
For instance, the ventilator itself saved Rosie’s life three weeks ago. Along with that support came a risk for infection, tremendous discomfort and agitation, the need for sedation and restraint, and even delirium. We deal with these difficulties and setbacks every day, all while attempting to wean her from the vent as much as she can tolerate.
Last week we finally got her sedation in a place that seems right for her. For the first several days she would wake up very agitated, moving too much for the ventilator, and sometimes thrashing. This movement is a risk for her pulling out her breathing tube, and it also causes her to “clamp down” in agitation and “fight the vent,” preventing it from delivering the support she needs, and causing her pulse ox to drop, heart rate to increase. Rosie needed a lot of sedation in order to stay calm, but it also meant she would sleep a lot, causing her days and nights to get mixed up, a recipe for delirium and more agitation. It was a vicious cycle.
One of our doctors explained to me that recent studies about pediatric delirium in an ICU setting have informed ACH to treat for that too, which has helped some. It makes sense, when you think about it. A child who is being forced to stay still in a bed in a strange place and wake up every couple of hours to be poked and moved and adjusted by people she doesn’t know would naturally have a touch (or more) of delirium.
Another change that helped Rosie be more comfortable was to move her breathing tube from her mouth to her nose. This happened just last week, and it’s so much better than I realized. She can safely move a bit more than before, and the tube is more secure, so she is getting all the support she needs from the ventilator. Most of all, she is not fighting the vent or trying to extubate herself when no one is looking 🙃
With all these changes, Rosie’s agitation has subsided tremendously. She is much more comfortable while awake, and even smiling at us when we talk to her. The first time she smiled after being admitted was the most hopeful and beautiful moment of the last few weeks. Her smile is everything to me.
Last week, soon after we found the sweet spot for sedation needs, a culture came back positive for two infections in Rosie’s lungs. This is another risk common to being on a ventilator, which makes sense. She is on a round of antibiotics to clear that up, and we expect it to mean a bit longer on the ventilator.
Another change to mention— Rosie had a procedure last week to place a PICC line, which is essentially an intense IV that allows us to draw blood for labs without poking her all the time. For the first two weeks here she was using a central line and an arterial line, both placed emergently in the ER. These are risks for infection and also very uncomfortable, so we were really happy to see the PICC line happen. The decision to place the PICC line means she needs a little less support, fewer medications. She is not in crisis, so we were able to remove the arterial and central lines. This is progress, however tiny, as Rosie is still on a lot of medications.
With sedation in a better place and antibiotics on board to treat this new infection, the focus is on clearing up her lungs and continuing to wean from the ventilator. This means respiratory therapy treatments every four hours around the clock. The treatment she’s receiving is called intrapulmonary percussive ventilation (IPV), which blows high-frequency pulses of air into her lungs via the ventilator, helping break up the cloudy mucus secretions (sorry for using that word 🥴) that are currently keeping her lungs from being as healthy enough to extubate. The doctors first tried this treatment at the end of week 1, but Rosie did not tolerate it well at all due to all the aforementioned agitation. We hadn’t gotten her sedation needs right yet, and she was delirious and agitated to the max. Now that she is able to remain calm, she can receive IPV without issue, which is going to help her make progress toward healthier lungs, bringing her one step closer to coming off the ventilator and going h*me.
“How are you doing?”
The night she was admitted we truly believed we would lose her. Even though this was not the first time that has happened, I will be processing that experience for years to come. I can’t speak for Andrew, but together we experienced what no parent should have to go through. For three weeks now we have had to dedicate a tremendous amount of brain power to getting through each day, keeping up with Rosie’s care, attending to her needs, and keeping the rest of our life going as much as possible.
By “the rest of our life” I mean our son, home, jobs, and other responsibilities. I keep thinking about how different this hospital stay is than the first time we were here. When Rosie was very sick as a newborn, we had not yet built a life in the United States. We had been living overseas as missionaries and returned here when I was pregnant after learning Rosie would need heart surgery (maybe I should tell this story sometime).
Over the last eight years, everything has changed. We have worked hard to build a life for our family— starting a business, going back to school, adopting our son, buying our home. These parts we’ve added to our lives bring so much stability, joy, fulfillment, and livelihood to Rosie and our family. Having our girl pulled away from our normal life, however necessary it has been, has been so, so hard. It’s not like it was before, when she was a newborn and I was postpartum. It’s harder in some ways, and easier in others (for instance, I am not pumping every three hours around the clock, and I know a thing or two about Rosie’s care now).
I have found strength in keeping the rest of our life “afloat” as much as I possibly can. Keeping our home and school routine for Beau, doing the laundry and dishes, cooking meals, preparing our home for her return— these things are keeping me going, and they help me believe that Rosie will come home, and soon.
I am so grateful to have the partner I have in Andrew, who has divided these responsibilities and managed these needs with grace and gentleness to me.
“How is Beau?”
Our boy Beau is a trooper, through and through. He understands what’s happening in his own unique way. He asks “How is Rosie? Is she still sick? Can she come home? Are the germs gone yet?” multiple times each day. He loves his sister so much. The Child Life Specialist at ACH helped us plan for talking to Beau when we were first admitted. Her advice was to follow his lead, show pictures of Rosie in the ICU first, then coordinate a facetime with her if he seems comfortable with it. He was more than comfortable with it. Every day on the way to school he asks to facetime with Rosie. Once he even got to talk to the doctor who was examining her at the time. He asked his cute little questions about germs and coming home.
Beau gets it, and I know he misses his sister, but he has handled it so well. We continue to do our best to manage his feelings and his needs through this. As I type this update from Rosie’s bedside, Beau and Andrew are having a day of fun, eating pizza and going to an arcade. He deserves to make special memories and feel as much joy as possible right now. I took him for a breakfast burrito before school last week, and he was THRILLED about it, as you can see.
This setup has been our normal— Andrew or I am at the hospital while the other is with Beau. My mom has been able to help with Beau some, which is fun for him and gives us a bit of time to do other things or for both of us to be with Rosie. We are making it work.
“How can I help?”
I am so overwhelmed by the outpouring of concern and kindness from people in our lives. Many of you have offered meals, help around the house, babysitting, and other incredible support. The stress of times like this goes beyond the medical needs we’re focused on, to be sure. Like many other families who are in the ICU with their children right this very minute, we are cutting back work hours, dipping into vacation days, and pinching pennies more than usual. It’s part of this experience. To those of you who know our family and are concerned about us, please know that we really are okay.
Some friends have organized an amazon wishlist with gift cards. I would be lying if I said this isn’t a huge help right now, and we are so grateful to everyone who has been able to send them.
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It is my intention to continue to update more frequently so that these posts don’t have to be this long. There is something hopeful about putting these posts into the world. I might also decide to write more about our family and our lives in the course of this hospital stay. I appreciate you reading, and I thank you for the support.