What a busy day!
It was Clinic day at Sick Kids… this happens every 3 months or so… our first appt. was at 8:00am and we got home at 4:30pm – we are zonked! But I didn’t want to leave you hanging (in case you were wondering what happened)
Firstly: The Bean’s Echo came out Normal. Yay!
AND today came with more good news… buuuut before that…
On the not-so-good side, she had a lower 6 minute walk test score, because there was more stress on her heart, as shown thru the Ekg she wore while walking. She also got quite short of breath and had slight chest pains during her 6mw test. She had to slow down quite considerably. This was concerning… so, she was been fitted with Holter Monitor and she’ll wear that for 24 hours & record her daily activities if ever she feels PH symptoms. Her friends should have fun with this at school 😉 (I personally think it may have more to do with lack of sleep, over excursion, and poor diet choices. Whilst away – still love the word whilst)
On the more Positive side: Her pressure in her lungs appear to be lower as shown by the echocardiogram – This is a good!! This means the Remodulin is doing its job, they’re even going to up her dosage juuuust a bit to give her a little boost; ’cause of course they still don’t know the exact pressures in her lungs, so they will need to do the Cardio-Cath in a few months. Until then, we carefully increase the Remodulin.
Remember the sleep clinic on January 31… the one a lot of you joined us via FB Live? Well the results from that have shown a HUGE improvement!! And it also comes with the best news ever!! Mia gets to ditch the Oxygen at nite!! Yay!!
In fact: The change in her sleeping is so HUGE it’s NEVER been seen before – (remember when she was waking up clutching her chest in pain and seizing; causing her to stop breathing?) That’s gone!! Like Totally Gone. The Remodulin fixed that, too. Seriously… They are PHlabbergasted! They’ve never seen this result on anyone else, any age, anywhere – ever! Of course they are a team of Respirologists, so they’ve probably never heard of Remodulin. So now our little Miss Mia will be a Case Study in a Medical Journal & Medical students will learn from her experiences.
Dr. Saadoun Bin-Hasan (Respirologist Fellow): He had not seen Mia since August and was WOWED by how good she looked! She’s gained 11lbs since the summer and looks so much better – those damn invisible Illnesses; they’ll trick you every time! 😉
Dr.Bin-Hasan is the man who will be writing Mia’s Case Report.