On Thursday Max and I headed to the hospital, we were going to attempt his un-sedated echo.
We were armed with a new Spiderman book, a ton of suckers and some gummy fruit flavored snacks. We got there early enough that I could walk the halls with him in hopes of boring him off to sleep. His eyelids fluttered and flickered getting heavier and heavier with each of my footsteps and soon enough he was out like a light.
I momentarily felt pretty proud of myself for taming the wild animal into submission. A few moments later the tech called us into a child friendly room where the flat screen TV was set to Treehouse TV. I laid Max down on the bed and the tech turned off the lights and got to work, I thought that it would now be a piece of cake and that maybe I would steal his candy as a reward for being completely awesome but my sinister plot was quickly ruined because the moment that the gel connected with Max's chest his eyes jolted open and he was less than impressed.
After a few moments of tears he was able to settle but only if I was talking, the moment that I would stop talking he would burst into tears again.
It took about 45 minutes and while I thought that after seeing so many of Nick's echo's I may be able to see something I quickly learnt that I am not as medically inclined as I thought I was.
When it was all over the nurse told me that the doctor didn't work on Thursdays but they were left specific instructions to call her when Max's appointment was over and that she would review the scan and call me the following day with the results.
Friday seemed to drag on and on as I waited for the phone to ring. Finally by 3pm I couldn't take it anymore and called only to discover that the mailbox was full. The next logical thing for any
On the drive down I told myself that if there was a problem the doctor surely would have called me in the morning instead of leaving it until the end of the day.
The receptionist was great and let me know that the doctor actually had our phone call "booked" into her time slots and she would not forget to call so I headed back home. I had barely driven five minutes when the doctor called and I had to pull over.
She said that "something showed up on Maxwell's echo and it couldn't be treated with medication" She said that he would need to be followed at the hospital. I was momentarily relieved thinking that if medication wasn't needed then clearly it was nothing serious. She then went on to tell me that the booking clerk would be calling me to arrange for me to come back in and discuss things in detail as its "easier to explain with diagrams" that was that.... that was all she was going to tell me. Nope this would not suffice and so I asked for more detail, I couldn't just accept "something" as a diagnosis I needed more. She then went on to tell me that Maxwell has "Mitral Septal Defect" - in layman's terms a hole in his heart. She then told me that he would need surgery to repair it but often times its able to be done via catheter instead of needing to open the chest. She then said that she will be consulting with Sick Kids Hospital (I am not sure why since MUMC is a fantastic hospital with a great cardiology dept).
I am flustered and feeling that sense of mistrust in the medical system boiling deep in the pit of my stomach. Given that this happens during the early weeks of fetal development its now clear that the first ultrasound tech that saw "something" with Maxwell's heart during my scan was indeed right and instead of being sent for a fetal echo (as I now know is the correct protocol) I was simply scheduled to come back in for a second look. I also now know that the murmur that was heard during Maxwell's first hospital stay which was classified as "innocent" actually wasn't and this could have been fixed a long time ago before it became so problematic and resulted in him being so fearful.
I wish that I could say that the hole in his heart was the end of the medical issues but sadly when all of his symptoms are considered together it still leads to questions of a possible syndrome being the underlying culprit and so we still need to see a geneticist, this I was told could take up to 18 months - clearly this is not going to be a quick process but at least we have some answers and can take action. Baby steps in the right direction!