I was as frustrated today as I was relieved yesterday. This morning Matthew had his appointment with nephrology. After fighting rush hour traffic to make it to the medical center, we had to wait about an hour for our appointment. Thankfully the nephrologist (Dr F) is a great guy and I didn’t mind waiting for him (too much anyway). We talked through all of the developments since I saw him last (when Matthew was 6 days old). Whew…we had a LOT to talk about. Dr F thinks Matthew’s one kidney is in great shape and his function looks good too. (Good news!) His biggest concern for his kidney is – the PDA ! “Fixing the PDA will be the best thing we can do for his kidney right now.” He agreed with our cardiologist that Matthew’s symptoms should subside with the PDA fix. And thankfully, our nephrologist has some pull! Dr F called over to TCH cardiology and we were worked in this afternoon. Which meant another couple of hours of waiting, but the ball was moving.
We had a 3:00p cranialfacial appointment which I had to cancel since we were still waiting to be seen by cardio at 2:45p. I don’t know why calling to cancel the appointment set me off, but tears started streaming down my face when I spoke to the receptionist. I was annoyed that we were seeing yet another cardiologist, not a cardiac surgeon. I was tired after waking at 5am w/Mattie and not being able to turn my brain off. I was sick of waiting. I needed to pump. I needed to eat. And Matthew had all he could take of me holding him or him sitting in his car seat so he was fidgety and mad. It was not my finest moment.
Not 2 minutes after I hung up, we were called back and I had to go through Matthew’s entire history again w/this TCH cardiologist. I completely lost it when he tried to tell me Matthew’s issues could be allergies or asthma. I was not very nice in saying “I KNOW what Matthew has...he has a PDA that is flooding his lungs and causing his heart to pump harder and get enlarged. We saw it in the ECHO he had done YESTERDAY!” I think the TCH cardiologist finally got my point and figured it would be easier to punt us over to the Cath Lab and let them deal with the crazy mommy.
Thankfully the sweet Cath Lab nurse came over to explain to me how they will fix Matthew’s PDA and I calmed down immediately. This is what I needed, for us to be talking about the fix. The nurse had the visual aids and went into great detail about what they will do and what we should expect. We talked about schedule and the first big opening they had in the Cath Lab was in mid October. I felt anxious as I told her ‘No. No. Matthew needs other surgeries, and heart trumps head but head needs surgery soon!’ Thankfully the sweet nurse understood and worked magic. Matthew is scheduled for heart catheterization to fix his PDA on Thursday, Sept 23.
It’s a day procedure (but I’ll pack a bag), only about a 2 hour event. Basically, the catheter will be inserted through the groin up to the heart and a small, coil-like device will be inserted to close off the PDA. For a more detailed explanation, click here. I met the cardiologist (Dr P) who will perform the catheterization. Dr P was delightful. He wanted to hear Matthew’s history, which is the 3rd time today I had to give it, but he was apologetic and nice when he asked. Thankfully he agreed with our original cardiologist, that it sounded like the PDA is causing Matthew’s symptoms and this will fix it…he could fix it!
So, today didn’t go quite as planned, but it ended well. We are scheduled to fix his heart! We’ll reschedule the appointment w/the cranialfacial surgeon and hope we can get that surgery scheduled shortly after the heart cath.
Now, it is time to take a breath and relax. It’s been quite the roller coaster the last few weeks. Thank you for the continued prayers and positive thoughts!
*hug*
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