In the Light of Day

Everything looks better in the light of day, even more so after a few hours of sleep, and this situation is no different.

On Tuesday, we received a phone call indicating that Garrin’s overnight oxygen saturation trend analysis from last week revealed significant desaturations. These results in combination with Garrin’s increased oxygen needs at home spurred an impromptu appointment with the pulmonologist. Garrin had a hard time recovering from chest x-rays and vitals in the clinic, which prompted the doctor to admit him for observation and a few tests, including an echocardiogram.

The room was beautiful. It had a great view, sleeping accommodations for both parents, and a private bathroom with tub/shower. Very nice accommodations for the short stay we were anticipating. Our hopes were soon crushed when the results of Garrin’s first test came back. His CO2 levels were way too high. The normal range is about 35-45. With Garrin’s chronic lung disease, his “good” range is 50-55, with <60 being acceptable. On Tuesday, his was 76. Garrin went from 1/2L of low flow oxygen that he was on at home to 8L of high flow at 80% oxygen. He was able to be weaned down from there to around 75%, but the subsequent blood gas showed only marginal improvement. So the decision was made to transfer us back to the NICU.

The middle of the night transfer overwhelming. Garrin was unable to eat by mouth after being put on high flow, and he was starving, not to mention mad about being mucked with so much. When we got over to the NICU, they took all their own measurements and replaced high flow with CPAP in hopes of reducing both his CO2 and his oxygen needs. Unfortunately this change delivered lackluster results. Garrin’s blood gas was virtually unchanged, and his oxygen needs were on the climb.

The tone from the neonatologist regarding the condition of Garrin’s lungs and the caronavirus, the result from the viral culture, was extremely grim. His lungs are in bad shape, he said, or something to that effect, which told us nothing as we’ve known of Garrin’s compromised lungs since Day 1. There was no talk of finding out what was wrong and fixing it. Instead the conversations focused on the probability of Garrin’s virus getting worse, which could result in further damage to his lungs or worse.

My husband and I have never felt the kind of stress that we felt in that moment — or at least not since the early days after Garrin’s arrival, I guess. It was like someone came up to us and out of nowhere sucker punched us in the gut. We were coming for a follow-up visit which turned into a hospital stay that we thought would be short and then suddenly the doctor was talking to us about intubation, a tracheostomy, and even death. “Based on the condition of his lungs,” he said, “nothing is off the table.”

I burst into tears. Those words cut like a knife. We could not understand how it was possible that hours earlier our sweet little boy was at home smiling at his brothers and sister and now we were talking about various harrowing scenarios in a new hospital with new doctors and nurses who didn’t know Garrin, not to mention the new procedures and new rules. No matter how hard I tried I just could not comprehend how we had gotten there. I remember asking the doctor the same question three times, trying to make things make sense. I’m embarrassed to say it, but I know I didn’t handle that first 24 hours well. I was angry, not really at the providers but at the world. I was mad that our time at home as a family was being put on hold. I was upset about the way the transfer between departments was executed, which caused me to question everything and everyone we came into contact with. I was unhappy about the lack of in-hospital accommodations for parents, and in my head, nothing about the experience was as good as the other hospital. It was childish, a side of me that has been rearing it’s ugly head too frequently of late. It probably goes without saying, but the first 24-hours were brutal — So. Many. Tears.

Even with increased oxygen needs and high CO2 levels from his damaged lungs, pulmonary hypertension, which was diagnosed from the echocardiogram, and an upper respiratory virus, Garrin spent the day in my arms, smiling and cooing. Several providers indicated that his clinical presentation did not match what they were seeing on paper, and that has been the main thing that kept him from being immediately intubated, something that I want to avoid, if at all possible. I cannot bear the thought of again seeing him mildly sedated or silently crying.

We requested a second opinion from the doctors that know our son.  One called me and another stopped by to see Garrin and to visit with me about his newest diagnosis. What a godsend that was. It helped to reduce our anxiety and gave us more confidence in the treatment options being discussed. Speaking of amazing people, one of our absolutely favorite nurses has been up to see Garrin twice, we received the sweetest valentines from her and a unit secretary who now works at this hospital, we’ve heard from several others, and we’ve run into several former patients.

But back to Garrin. So far, the caronavirus (common cold) has been asymptotic. Praise God! Additionally, the move to CPAP lowered his CO2 to within the good (for him) range. His oxygen needs have not changed, so the doctors decided to reintroduce nitric oxide and dexamethasone, drugs that Garrin received during his more difficult periods before. The nitric oxide has helped him to maintain his oxygen saturation more consistently, and the team will try to wean oxygen tomorrow.

For now, the plan is to wait the virus out, which could take a week or two or longer. Once he is clear of the virus, we will have a better understanding of its impact on Garrin’s current condition. However, should Garrin’s oxygen needs or CO2 level increase, he will need to be intubated. Addressing the high CO2 level and reducing oxygen needs are the first steps in treating the pulmonary hypertension.

Pulmonary hypertension — talk about scary words. It’s an incurable condition related to the increased blood pressure in the lungs’ arteries that has the potential to cause cardiac death if left untreated. Thankfully, it has been diagnosed, and Garrin will be getting the care that he needs. His little lungs can grow new tissue for months and even years, but to do so, we have to protect them from ongoing injury that can result from high CO2 levels and too much oxygen.

So here we are. Back on the hurry up and wait roller coaster that the NICU is. So many potential outcomes, each of which will likely keep us at here for months. During our conversation with the first doctor, the childish me cried out “I can’t do this again. I just can’t.” My daughter called me today expressing similar sentiments. In reality, I can do this again, and we will get through this, but it won’t be easy, and we won’t be able to do it without you, our dearest family and friends. Please continue to pray for my beautiful family, and have patience with us as we figure out yet again what “normal” looks like.

“Therein lies the magic and maybe even an important secret kept in plain sight. This is where you’re supposed to find joy. This is where you’re supposed to discover meaning. You’re supposed to be here.” ~Brian Solis

Actual age: 25 weeks and 1 day (He will be 6 whole months next week!)

Corrected age: 48 weeks and 2 days (If born on his due date, he would only be two months old!)

Hospitalized: 150 days

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