Thank you all for your sweet words of support and encouragement for yesterday’s testing (Part 1 of 2). As crazy as this seems, Struthers and I experience the most powerful bonding moments in the hospital. And I guess that’s appropriate and altogether NORMAL. Perhaps it’s because when we are there, there is nothing else. Just us, our little family. No housework, no bottles, no feeds, no meds ( that I have to administer), no nebulizer, no bills or mail pile, no work emails or calls because it’s the one time I’ve carved out in advance to just hang out with him. Nevermind it’s in a hospital room, waiting room, exam room or pre-op area. THAT’s our time. And I need to make more of it outside of those familiar locations. THIS is a normal-mom struggle, and I’m so grateful for it! I’m grateful for being able to laugh at the fact that Struthers thinks stickers the nurse gave him are supposed to go on his face to hold his oxygen. I’m grateful that he can entertain himself for an hour putting his spacer and inhaler together correctly (see the new YouTube video on the page). I’m grateful that he looks forward to the wagon rides and that everyone plays along, from the valet who fetches it when he yells “gagon” as he sees one, to the radiologist who let him stay in it instead of the bed rolling alongside us to the procedure room, to the anesthesiologist, who practically had him asleep before removing him from his beloved mode of transportation (or BlueBunny).
The CT went very well, and they were actually able to get some really good images with less exposure time than they were expecting. Our anesthesiologist was AMAZING, and he wanted me to help hold Struthers while they gave him the anesthetic through the mask. We’ve known from Day 1 that this kid was a fighter, and I’ve known how much he fights coming out of anesthesia. But none of that prepared me for how much he fights going under the anesthesia. While I was happy to be there to comfort him, and have him look into my reassuring eyes as they closed, it didn’t feel like I was much comfort, and it was really hard to watch. I’d rather suction him every hour (which we both HATE) than to see that again! It was also hard to FEEL the work in his chest, I could suddenly feel what I sometimes hear in how air moves. And that terrified me for a moment, but also confirmed that putting him through the testing was worth it.
As expected, the pulmonologist called me after clinic today and took the time to explain and answer lots of questions, including reminding me that this is only 1 of 2 parts of the necessary testing. Together, the CT and the PFT will paint the picture of our next few years. So what do we know from Part 1? We know that Struthers definitely has Bronchopulmonary Dysplasia in both upper lobes, inhibiting his lung function. The degree to which the function is affected will be quantified at the PFT in June, but we do know that only about 80% of his lungs are capable of working efficiently. We know that 15-20% of his upper lobe lung tissue is damaged and not working, to put things simply. While there is hope of some recovery with growth, this is likely long term damage that will always impact his breathing. Essentially, BPD means there is scar tissue from either working too hard and/or being forced to work for long periods of time (ventilated) to the degree that the lungs stiffen and become somewhat inelastic and therefore unable to move air easily or in large volumes. In addition, the lower lobes seem to be working fine, and they ‘overexpand’ as he tries to get his needed airflow, and that also will damage the tissue over time. So…add to that a little cold or asthma flare-up, and the still-immature alveoli throughout, and you have a downright scary respiratory distress situation. A situation we’ve experienced too many times this year, and one the pulmonologist said we should expect for years to come. There’s not likely to be visible progress (radiographically) for another 2 years or so, and until then (at least), we should count on having to delicately manage any threats to Struthers’ breathing and support it with drugs and oxygen therapy.
In summary, we don’t really know anything new, except that there is a physiological reason for his inability to get off the oxygen. We confirmed a physiologic reason the tiniest bug sends him in a downward spiral. And that physiological reason indicates that we should continue doing exactly what we are doing, but that we shouldn’t necessarily expect he will be able to wean from the oxygen soon. It confirms that we must continue to be diligent in minimizing his exposure for at least another year, and that’s already resulted in adjusting expectations for travel plans (though we will keep the ones we have for next week). And we can likely rule out some fairly nasty progressive disease processes like CF and interstitial lung disease.
Thankful for whatever answers we can get and the peace that comes with simply adjusting expectations–THANK YOU for your prayers!
Eli, Cami and Struthers