Monday morning we walked out of the hotel and wow, the humidity last night was nothing compared to this morning. We made it to the University of Iowa Children’s Hospital. After we found our way to the Clinical Research Unit and checked in I took a picture of Ashton in the waiting room. I’m not sure if he was being a bit bashful or if he just wanted to share the limelight with his zebra named Giraffey.
The first order of business was reviewing and signing the 33 page Consent Form with the Clinical Research Coordinator. It was one of those times I was not sure if Ashton was paying attention or not but every now and then he perks in with a question that proves he is taking it all in. When we got to the part about iron levels, Ashton says rather surprised, “There is iron in my blood? I mine iron!” Chandra, the Research Coordinator was a bit confused by him mining iron but then Ashton adds, “In Minecraft.” LOL! Funny how Minecraft creeps it’s way into every conversation.
Next is meeting and talking with the Neurologist heading the study, Dr. Matthews. Ashton was getting a bit strung out. He was fasting, tired from our travels and having some anxiety from all the talk of blood draws, infusions and medicine. He always does great with blood draws but he stresses all day and constantly asks about it when he knows he has to have a ‘shot’ as he calls them. We made it through all the paperwork, I signed the Parent Consent Form and Ashton signed his Patient Consent Form. Dr. Matthews gave Ashton a brief examination. Then we were on our way to start with all of his testing.
It was kind of a whirlwind having his blood pressure taken, getting his height and weight checked, having an electrocardiogram (ECG), giving a urine sample and having his blood drawn for about 15 different vials. He met the Blood Ninja Queen. Instead of numbing cream he got to use Buzzy® the bee. It works right away and is so less messy!
Good news, there is a bit of a schedule change, radiology wants to fit his DEXA (Dual-energy X-ray absorptiometry) in next. Yes, the scan used to measure bone mineral density (BMD), measure bone loss and diagnose osteoporosis that postmenopausal women should be very familiar with, though they frequently just have a scan at their lower spine and hips or use a different machine to do a quick scan of their ankle. Getting his scans done now means Ashton will not have to arrive fasting tomorrow morning as well. Ashton started becoming his usually chatty self. He has become such a negotiator too. He was doing so well keeping still for these full body scans, even the ones that took longer with his feet taped in position on the table. The Radiology Tech told him he was being such a good patient, in fact her best patient of the day. Ashton asks, “So what do you give your best patient of the day?” LOL!
Then we were off for a long walk through what seemed like a maze over to the Eckstein Medical Research Building for Ashton’s liver and thigh MRIs. Ashton’s trip here had been postponed to allow for the set up of a new MRI (magnetic resonance imaging) scanner. In fact, Ashton had the privilege of being the very first patient to use it. I had some paperwork and a survey to complete in the waiting room while Ashton was having his scans done. Ashton was brought back sooner than expected. He broke the brand new scanner. Oh no! LOL! They completed the scan of his liver but need to do some work on the scanner before they can do the scan of his thigh.
That was our cue that it was time to take lunch. There just happened to be a café directly above so we were taken there and told just to take the elevator back down in about 25 minutes. It is a coffee, salad, soup and sandwich café. Ashton had the bacon grilled cheese, with tomato, it looked so yummy! Ashton was so grown up sitting at table waiting for our food to be ready. He says “I’m all done with my liver scan, then after lunch I do my thigh scan.” I knew he could be still for a MRI as the last time he had one about 18 months ago for his brain follow-up he did it without sedation. Though I was quite impressed today that he made it through two MRIs just listening to music and not having a movie to watch.
Next off to his echocardiogram. I was a bit anxious for this one. Ashton just had his yearly Echo at Madison where I was told that all the measurements could not be obtained to calculate his Left Ventricular Ejection Fraction (LVEF) but instead have an estimate of 50-60%. Um, normal range is 55-70% so the fact that his could be 50% makes me very uneasy. That was his 5th Echo and his LVEF had been in the low 60s since his first Echo almost 5 years ago so this is a drop and I would like to know exactly what it is. Today was the quickest Echo Ashton has had and the cardiac sonographer got his LVEF. Yay! I did not doubt that they would considering a left ventricular ejection fraction <55% is an exclusion criteria for the trial. So if Ashton is in the trial then I will know that his is at least in normal range.
And finally off for his last test of the day which is also the easiest and the fastest. Just one X-ray of his hand and wrist. And he scores some loot, he gets to pick two stickers. As we were departing the X-ray department there was an employee in the hallway who said hello and mentioned that she has a son with Duchenne. This was so very cool and of course I stop to chat. This was my very first chance meeting of a Duchenne mom. Ashton and her son Caedan are very close in age too. So happy to meet Tara, that she recognized what Duchenne looked like and that she said something. Hoping that Ashton gets into the trial and if so we can get the boys together to meet.
We make it back to our hotel and Ashton is anxious to hit the pool but I need some down time. We do not have cable at home so it was a treat for him to watch a new show and it was a treat for me to sit quietly to decompress and sort through my paperwork for about 45 minutes. We decided what we were going to order for supper and then we were off to the pool for about an hour.
Interesting, to be expected but sad how Ashton has come to the point of tiring from swimming and tells me he is done instead of me telling Ashton swim time is over. When we got back to our room I ordered supper right away and then helped Ashton take his shower and get dressed. We ate then I gave him his medicine, brushed his teeth, put his night splints on and tucked him in bed. I got things organized for Tuesday’s appointment and start packing up for checking out. It’s been a long day and we are both so tired.