Yogi Berra famously said, “It’s déjà vu all over again.” While he was referring to Mickey Mantle and Roger Maris hitting home runs, for me, it’s more like “Another day, another hospital room.”
Becky was admitted to the PCICU last night after a concerning pediatric appointment and subsequent visit to the ER.
Here we go again.
Becky has been doing very well. We came to the hospital last week for her follow-up appointments with the Pulmonary Hypertension Team. The dietician removed formula fortification from Becky’s feed as she is tipping the scale at 14 pounds, 6 ounces. I seem to find a new fat roll on a daily basis. She still refluxes at times so there were some tweaks made to her medications.
Sarah, the world’s greatest nurse practitioner, was concerned with her breathing and ordered a chest x-ray as well as labs. The chest x-ray wasn’t great. While better than the last one, there are still opacities present on both sides. Sarah decided to increase her oxygen to two liters from the one liter she currently receives.
Becky’s labs look good. Sarah was particularly encouraged by her NT-proBNP which measures the stretch or dilation of the heart. After Becky’s surgery, her values were in the 20,000+ range. A normal range is 150 or less. Her value last week was 6,875. Much better but there is still work to be done. She continues to take a variety of medications to address pulmonary hypertension. Overall the appointment was positive and I was pleased that Becky would be transferred back to her cardiologist for future care.
Yesterday morning she coughed up a little blood. Nothing too much but enough that I took some pictures and sent them to Sarah. She thought it best to follow-up with the pediatrician so we went for a quick visit. As has happened many times before the immediate concern quickly became non-consequential. The pediatrician wasn’t worried about the scant blood but was shocked at her rate of breathing. The respiratory rate (RR) for a normal infant is 40-50 times per minute. Becky was breathing 80+ times a minute. After consulting with Sarah, the determination was made to send us to the ER. Becky’s most recent x-ray wasn’t perfect and breathing at this rate would quickly exhaust her.
I was conflicted about whether or not the trip was really necessary. Although she was breathing fast, she looked comfortable and was acting normally. Well, when we arrived at the ER, the triage nurse counted her RR at 102. He waited a few minutes and repeated the count to verify the finding: RR at 95. He told me he had only seen a RR this high in one other baby.
We were taken to the pediatric emergency room where I reconnected with the Julia, the cardiac fellow that worked with Becky towards the end of her PCICU stay. She ordered an x-ray. As the image came up on the screen, I immediately saw that it was worse. I’m certainly no medical professional, so if I can see a difference, it is noticeable. She agreed and I knew we were heading for admission.
Becky was put on high flow oxygen. She doesn’t need the oxygen so much as she needs the pressure. Because Becky has pulmonary hypertension and the pressures are high in her lungs, it is hard for her to get good breaths. In turn, she breaths quickly to compensate. By forcing air into the lungs, it works against those high pressures and helps her breathe more comfortably. At least that’s what I think it does.
An echo was ordered and the on-call pediatric cardiologist examined Becky. We had last seen this doctor in the NICU. Which seems like another lifetime. His first comment was “Well, her growth is good. And the hair is holding steady.” He told me that her rate of breathing and her x-ray were serious enough to warrant admission to intensive care. Becky’s echo is concerning as well as confusing.
She continues to have residual VSD which means there is a leak between the chambers. Basically there is a 2mm hole between the Left and Right Ventricles. Initially, the doctors thought this was a leak between sutures in the patch placed during her surgery. But shunting of blood continues in this area. This echo also showed another leak and an unusual one. Now there appears to be a jet from the Left Ventricle to the Right Atrium. Becky has had Tricuspid regurgitation before. The question is whether this new leak is just the Tricuspid regurgitation or a different leak all together.
There was some debate about which intensive care unit to send us to. I wanted to return to the PCICU which feels like home. Apparently, the doctors at the Heart Institute like to keep a close eye on their patients. Since she is less than 6 weeks removed from her surgery and her case is complex, the decision was made to admit her to the PCICU instead of the PICU. I was relieved. It is easier to be in a place where I know the routine and many of the staff. I also know where the bathroom is located and how to get to Starbucks in the main hospital.
As we walked from the ER to the PCICU, Becky enjoyed the ride and those pretty hospital fluorescent lights. While waiting for the elevator, I looked back and saw her playing with the oxygen. She’s going to be a handful this time around.
Becky had a good night’s sleep and her RR is now in the 40s to 50s. Her heart rate has come down as well. She is resting comfortably and enjoying some new toys.
People are excited to have her back. Which is strange to hear but I appreciate the affection. It’s been lovely reconnecting with many of the nurses and doctors. Someone had a little fun picking the character for her door sign. Which shows that they know Becky and her hair.
Nothing much will happen today. The team hopes to wean down Becky’s oxygen and keep her comfortable. I look forward to a couple of Zoom calls and maybe a family meal. Today is Josephine’s 16th birthday and I want to celebrate with her in at least an abbreviated way. I will move into the Ronald McDonald House tonight. Tomorrow a new team comes on rotation in the PCICU. The ENT and Echo teams will do some detective work into her case. Becky will try to figure out what this light on her forehead is all about.
Now we add to our headband collection and pictures of Becky laying in a bed with a high flow nasal cannula. A couple weeks ago, one of the instructors that I work with at the YMCA dropped off a package of hair bows and clips for the PCICU. I gave them to Sarah this week and asked her to put them in the closet, never imagining that Becky would be wearing one. When I walked in this morning and saw the kelly green colorway, I smiled.
And thought, ““It’s déjà vu all over again.”