Driving In Cars With Garrett

“What brings you in the ER today?”

“His sats have been low, he’s been requiring 3.5 liters of O2 at home to keep him above 92%. He is coughing a lot, and we’ve suctioned up some blood tinged secretions from his lungs.We are going to need a respiratory panel, a covid test, and a chest x-ray. Thank you”

Last week when we brought Garrett in to the hospital we knew exactly what to ask for. The ER team was happy to comply and we were only there about 4 hours before we got answers. The x-ray revealed a small spot of pneumonia brewing on his lung behind his heart. We were prescribed antibiotics and we got to go home. Often the ER is the gateway to a week’s stay in the PICU, so an in and out trip is a good thing.

It’s always better, it is so much better when Garrett can be sick at home. When he can recover at home. Great job, right? Yay us, right? We caught the infection before it got horrible, we are able to treat it with antibiotics, we avoided an admittance, so a good week, eh?

So why is my heart heavy?

Well, first of all, the steps to get Garrett in to the Doctor are exhausting. It was clear that we needed to bring him in. He was clearly sick. Requiring oxygen is a big deal. Suctioning up bloody secretions alarming. The fear that he is suffering from aspiration illness is a normal one-he frequently vomits, and frequently aspirates…but simply being accustomed to it doesn’t lessen the fear.

Our goal was simple. Get him antibiotics if he needs them. And get them fast. Get them before this illness takes a turn for the worse. How do we confirm the need? Run the tests we asked for in the ER.

First we need to get him there. That takes two people. Garrett still doesn’t sit in a car seat. When we go anywhere, somebody holds him, and that same person is in charge of suctioning/venting his tummy/preventing vomiting etc. Somebody else (obviously) drives. So- that’s me and Andrew.

But we’ve got three other kids. In this current season of Coivd -19, we can’t bring three other kids to the hospital (and frankly, even when there isn’t a pandemic going on, bringing a 6 year old a 4 year old and a 5 month old to the hospital for 4+ hours is not the best plan). And then of course there is Andrew’s job. Of course any decent place of employment is going to understand if you say “Hey, I gotta take my child to the ER.” Used yearly, that’s a line that works. No questions asked. Probably even twice a year. But when you have hospital related absences on the regular, its reasonable for co-workers to get annoyed.

So, bringing Garrett in to the Doctor means waiting a couple of hours for my Mom to come watch our other kids, (this is assuming she can drop everything she is doing to drive the 60 miles to our house) pack up all of Garrett’s travel equipment and get him in the car(travel ventilator, travel suction machine, gtube/feeding equipment, emergency trach bag, regular diaper bag), and Andrew takes the rest of the day off of work. Again.

Even with the hardship, the complications, and the annoyances- it really was a good visit. We got what we went for. Garrett is slowly responding to the antibiotics. He still needs extra oxygen, but not as much. His coughs are coming less frequently. We are no longer suctioning up blood. Andrew has made up the time with work. My Mom is gracious and giving and loving and doesn’t hold the trip against us.

But I am tired and discouraged and sad.

The rest of our family had a small cold. And Garrett got pneumonia. A simple runny nose for the rest of us was not so simple for Garrett. It required a day off of work, 2 adults and a bunch of emergency equipment in a car, and 7 hours of Grandma’s time.

Garrett recently had a smaller trach placed, and the hope was he could get an even smaller one soon. The hope was he was going to have a sleep study that would show he didn’t need the ventilator at night. The hope was we could cap him during the day and he would breathe entirely out of his mouth and nose while he was awake. These were the hopes. And they still are. They are all things we can hope will happen in the next few weeks or months.

But in the meantime I am laying in bed, typing to the sound of the whir of his oxygen machine downstairs. A whir and a buzz and a hum that I HATE.

At least I can be glad that we knew what to ask for in the ER. I can be greatful for antibiotics. I can be hopeful that the next time he gets sick it won’t hit him so hard, and we won’t need to bring him in to the ER.

And, of course, I can pray.

I can pray for optimism and joy and hope in the midst of this silly, simple ,pneumonia setback.

See, he’s not playing hooky. He really did have his kid in the ER.

Here I am self pitying… and this little champion hasn’t voiced one complaint. He has been such a trooper, and really quite cheerful through the whole illness. My darling.