We are still amazed and blown away with Struthers’ progress and the ‘escape’ of so much more that could have gone wrong. And until now it has appeared as if we did indeed escape some of the worst effects prematurity has to offer. However, Struthers’ respiratory system has continued to struggle beyond what is expected. Needing oxygen and going home on O2, even for a year or so, is somewhat common, and is expected for even much later-term and some fullterm babies in Colorado. But none of us, including his pulmonologist, gastroenterologist, occupational therapist and pediatrician, expected his oxygen needs to increase more than his size and other development would indicate. None of us expected that he would still be unable to pass a room air challenge in Colorado Springs (he marginally passed one in Denver a few months ago, but it was borderline and he passed out after the 20 minutes, silly boy!). None of us expected that by the time he was crawling, pulling up and bear-walking, these activities would be slowed by untangling an oxygen cord or taking a ‘breather’–literally sucking the skin in between his ribs (retracting) trying to get good breaths.
There’s a medical expression “When you hear hoofbeats, think of horses not zebras.” So the horses of Struthers’ pulmonary issues have been the common preemie diagnoses of Chronic Lung Disease, Bronchopulmonary Dysplasia, and asthma in a reactive little dance. Other horses that could cause the prolonged respiratory distress (unrepaired PDA, aspiration, pulmonary hypertension) were ruled out or fixed. So now that there is no indication of the issues improving to the degree that would correspond with growth, and some indications of worsening…it’s time to look for the zebras.
The first zebra the pulmonologist decided to mention triggered so many emotions for me, and many of you in Leesburg will instantly know why. She wanted to know if he’d been screened for Cystic Fibrosis at birth. Since this is a required screening in Colorado on all newborns, I only assumed so. But apparently the protocol for newborn screens isn’t exactly the same for babies born into the NICU…no heel prick necessary when you have a central umbilical line and are fighting minute to minute for every drop of blood to circulate. And then my pediatrician’s reaction when I asked her to try to locate the screen made my heart tighten. I think she seriously thought that was a clinical explanation, too. One would think I’d know by now that devastating diagnoses don’t have to mean devastating lives…but I still pretty much lost it until the records were located (apparently when you transfer NICU’s, such things can get “lost”). So after some searching, his newborn screen was indeed found to be most likely negative (it was done outside the ‘newborn’ window and only measures one chemical level). While this didn’t make a ton of logical sense to me that she was worried about this, since CF doesn’t run in either of our families, it was enough emotion to just about send me postal.
So in order to investigate other zebras, or assign an ‘abnormal’ horse diagnosis and management, we have two steps. One is a lung CT that will occur tomorrow. They will be looking for the degree of long-term damage as indicated by thickened walls and damage done by his extreme work of breathing. To some degree, they may be able to quantify the functionality of the little alveolar sacs, and that will give us an idea of how much improvement we can expect with just growth. The exam must be done under anesthesia, so we will head up to Rocky Mountain Children’s Hospital in the morning, and the poor guy has to have an empty tummy until they wheel him back to sleep at 1pm. I’ve been grateful to still have breastmilk in the freezer for many little illness bouts, but I’m incredibly grateful that we will have it to keep him happy and full for at least one normal feeding tomorrow morning. Apparently, breastmilk has a much quicker digestion, so I only have to cut that feed out after 9am, as opposed to anything else cutting out tonight. Also again grateful for the g-tube, as I will be sneaking in for a midnight feed for sure.
The second step in our Zebra Hunt is an infant Pulmonary Function Test (PFT), which is scheduled for June 14. This procedure, too, will be done under anesthesia, but at the other Children’s Hospital in Denver. If you’ve ever done or witnessed a child with asthma undergo a PFT, you will understand the sheer amazement that they can do this on an infant who can’t follow directions to breathe out hard and fast or hold their breath. But someone brilliant figured out how to measure the same lung capacity and reactivity on an infant. Struthers will be sedated and placed into a pressure/oxygen-controlled chamber (much like the NICU Giraffe he spent his first weeks in). They will then place him in a vest that performs the inhale/exhale in the proper manner for measurements to be obtained. Amazing. That test and the CT together should give us a better idea of what we are dealing with, and help us manage accordingly.
- Technology exists to help us see what is going on!
- Excellent physicians and we are excited to see the Rocky Mountain Hospital for Children staff we know way too well!
- Continued growth (he’s in the middle of a spurt!) and development
- Safe travel, safe procedure, easy recovery
- Clear images that provide answers
- That Mommy can appreciate time off work and with him, even if it is at the hospital.