Fourth Time Is A Charm

Action 4 Ashton > Duchenne Life > Medical Care > Fourth Time Is A Charm
13, Duchenne & PFTs

You may have heard it said, “third time’s a charm”, however in the case of Ashton’s most recent pulmonary function tests (PFTs) it was the fourth time’s a charm which was true.

During his semiannual neuromuscular clinic appointments the equipment was down in the pulmonary lab. Since the clinics at the Fox Valley location of Wisconsin Children’s Hospital does not have their own laboratory or radiology departments I needed to make separate appointments at a later date to have his blood tests, scoliosis screening xrays, plus something new, xray check for compression fractures because of his ongoing back pain as well as his whole body DEXA scan.

As it turns out, Theda Clark, the hospital which owns the space where the Fox Valley Children’s Hospital is has been where we have been getting his laboratory testing done since no longer traveling to University of Iowa Hospital does not do DEXA scans so we needed to get this routine screening done at yet a third location during a third appointment. I was able to get his lab and xrays scheduled late on a Friday for Monday morning so trying to get his PFTs scheduled was not possible. Ashton did great with his blood draw and only one stick was necessary, yay. I scheduled radiology first just in case the laboratory tuned into a bad experience. The xrays went well but really wore Ashton out and he was spent for the day before mid morning:/.

Ashton did have an upcoming Urology appointment at Children’s so we scheduled his PFTs for after that. Well, the pulmonary lab was extra busy and Ashton was having a rough time during his urology appointment. We waited an extra 45 minutes and were told would be about an extra 45 minutes more so we rescheduled for the following week. We came back for the third appointment for his PFTs, after waiting 45 minutes were told that no staff was available to do the testing. So we make another appointment for this routine testing later in the week for after school.

Emma Anxious To Tryout PFTs Nose Clip

Coming a fourth time for his PFTs after school means that Emma is along. Ashton has always disliked wearing the nose clip. Emma of course thinks wearing the nose clip is fun. And I just want to say kind of crazy that it was not possible to shut the door behind Ashton’s wheelchair, tight quarters in the lab and/or the local children’s hospital must mostly have only tiny wheelchair patients or fully ambulatory patients.

I was offered a printout of his results which I took but of course did not know what they meant lol. I did notice his height and weight listed on the form were not correct. I used myChart to reach out to his Pulmonologist. I really do like his new pulmonologist. November was our second time seeing her and Ashton’s first pulmonary testing done under her care. With just two brief paragraphs she completely and thoroughly explained Ashton’s results in an easy to understand manner.

The short version is the spirometry test shows Ashton’s lungs currently have “good” function. The long version is just a bit concerning to me though decline is expected with Duchenne. His forced vital capacity (FVC) or the full amount of air he can blow out of his lungs was only .1 L less than it was just one year and two months ago however when you factor in his current weight and arm spam overall he is now down from 70% considered normal to 60% which is below normal. While his lungs are stable and I am very grateful for that I can not help but continue to be worried about his overall condition and how long this stability will last.

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