Macsen had a 2nd echo and a 2nd EKG done. His function is much worse then it was post pacemaker placement and his valve is leaking more. His cardiologist up here was visibly shocked at how much worse it looked. Alabama card never said he looked worse - just that he wasn't looking better :( Boston card confirmed my suspicion that bc his pacemaker was only partly working for so long it further accelerated his heart failure. EXPLETIVE EXPLETIVE EXPLETIVE! As if my baby could tolerate that! No wonder he was looking so much more tired and cranky. Why wasn't this caught in his monthly echos or monthly EKGS. The doctors here pointed out how it was CLEARLY evident when you looked at his EKG when the pacemaker wasn't working. I am so upset I can barely function - I just want to break down in tears but Macsen is so perceptive and already so afraid about transplant I don't want him to see. That's what showers are for right? Crying your eyes out in private?
Mac's Alabama pacemaker team wanted to see us every 6 months but Boston was shocked by this - a new pacemaker needs more frequent monitoring and adjustment apparently. I didn't know this. I thought bc it was remotely transmitting every night any problems would be caught but apparently it doesn't. I'm so angry with myself. I should have pushed harder when I noticed him more tired - especially since he improved so much immediately after surgery.
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