Tuesday, August 01, 2017

Heart Issues, Part 982

As I've shared before, Buddy was born at 36.5 weeks because of his heart. He had an arrhythmia that the woman's hospital corrected by restarting his heart. Luckily, we didn't know about that until later. Then they transferred him to the children's hospital where it was all about getting his lungs under control, other body systems, and continuing issues with the structure of his heart.  Luckily, he was 10lb 1oz (and no, the doc didn't miscalculate) and they were able to treat him right away rather than having to wait until he was bigger. The longest 16 days of my life,

Over the last six years we've gotten a lot of conflicting and confusing information. At one point the doctors at the children's hospital considered Ebstein anomaly, but dismissed it. Ryan made them put IN HIS CHART that "Mom is not to be told" because it would have been caused by my lithium. Of course it was on the first page of his discharge papers that I saw before Ryan could hide them. I'm not a fan of lying to your partner, but sometimes it's a kindness, especially considering the circumstances--c-section, preemie, hormone craziness, postpartum depression, etc.

We've stayed with the children's hospital because they have his records from 2 days before he was born. They are good, but oh, the frustration. Getting an appointment is nearly impossible and if you have to reschedule--with ample notice--they ask you why. The appointment (echocardiogram, ECG, and meeting with the doctor) takes about four hours, which is always great fun with a small child. He has a special bag that we fill with snacks and books, my Nook with interactive children's books, crayons/markers, journal, blankie, "stuffy," etc. etc. etc. It's still an ordeal.

Our issues with the doctors start with they still don't know what's wrong with him. And every third time we have a new doctor who reviews his chart while we're in the room. This is when Buddy is at his least patient. We have bounced around from different teams, but we're currently with cardiomyopathy even though that's not really his issue. Or maybe it is. They say that it's left-ventricular non-compaction, but are open that it's not really it. His left ventricle is misshapen as are both atria, but it seems to be functioning moderately normally although there is definitely some abnormality with that as well.

Then they always want to do a Holter monitor. This is an absolute pain in my/Ryan's butt.  First, you have to schedule two days off work--one for the appointment and then the next day to monitor him while he's attached to wires. Twice they told us that they didn't have one on hand so we'd have to come back the next day--and maybe they'd have one. Too bad about your schedule.The second time I just parked myself in the waiting room--with the boy--until someone returned one. The most fun was that they wouldn't look at the results until out next visit 3-6 months later. Once they found tachycardia--two beats--that Ryan was convinced was due to him tearing his leads off during naptime.

Holter monitor with a little cross-body pouch for the device that is about the size of a deck of cards or a computer mouse. Much easier than when he was little and we had to tuck it into his onesie. 
Yes, we watch Wheel of Fortune.

And do not even get me started on the nurse who is nice enough, but completely useless.  It takes days for her to return a phone call about minor things like sending his damn prescription to the pharmacy. And then telling us after years of twice daily doses of this compounded medicine that insurance won't cover that it was only recently to a therapeutic dose. Mother of pearl! At least he finally can swallow pills.

Oh, and each trip is about $2,000.  With insurance. And finally, there was the trip--when I was alone with Buddy because everything weird happens when Ryan isn't there--when we were getting ready to leave and the nurse handed me a note to give to the school when he started kindergarten saying that he should be allowed to carry a water bottle and NO P.E. What the actual ---! I was trying to get out of the room without sobbing. Buddy is ridiculously active and if he isn't life is not good. He crawls up the walls and gets anxious and antsy and angry and... Ryan called for clarification and after a few days got to talk with the doctor. He said that we need to be cautious and when he gets old enough for team sports he needs a stress test and most likely he should stick with things like jogging, swimming, golf... We talked with the P.E. teacher for his Montessori kindergarten and were assured that he wasn't running a boot camp. I will never, never, never forgive them for just lobbing that at me without explanation,

So, we talked to Buddy's pediatrician and she referred us to another cardiologist. She did the basic tests (echocardiogram, ECG, Holter monitor). Thanks to Ryan spending an afternoon walking up and down the Medical Center to get his records, she was able to see the results from that weird Holter monitor and although she said it wasn't tachycardia it was something else troubling.  So she wanted him to have an MRI. She said that it would probably be about three hours and since Mr. ADHD can't sit still for three minutes he had to be sedated. Thanks to videos on YouTube we were able to talk about what he was going to do. He did well although he threw up as he always does with anesthesia.  We're waiting on the results and we have an appointment soon.

Right before the MRI--watch Wild Kratts and snuggling his new Scentsy bunny, Sally, who was a fundraiser for the March of Dimes and smells like pine, which is a surprisingly comforting scent. She has a little hat that they gave her so she'd look like the doctors.

UGH. I know I should be thankful for good insurance and a wide array of doctor to choose from, but it is exhausting. SO much fighting. Six plus years and it's never going to end. We have to fight to get the care he needs. We need an assistant to deal with all of the details and paperwork. And a couple million more vacation/sick days. Mainly, though, my OB/GYN had a feeling that something was wrong at my 36 week appointment and so we didn't lose him before he was even born. I feel ungrateful because any trip home from the Medical Center with a child in the back seat is a success. There are so many parents who don't get to do that. We're very, very lucky that these are our worst issues.