We had our normal 8 am appointment as I like them (first appointment of the day = no waiting). We barely walked into the reception/waiting area and Jasiu's bottom lip started quivering and tears were rolling :( He calmed down a little while they got our room ready and then we were called back and it started from 8:10 to 9:15 Jasiu was crying hysterically. All through his weight/height check, pulse ox, respiratory and blood pressure. He cried so much that hour that now his voice sounds so hoarse as if he was screaming all night. We saw the nurse practicioner for a while and it was as if his light switch was just turned off, he liked her (finally omeone he liked there!) more specifically he liked her badge, pager and every other thingy that he was interested in, but he wasn't crying, he was showing off his walking skills and how friendly he is, he even danced wiht our Elmo. She got our history since our last appointment and informed us that we won't even talk the F word until 6-9 months from now and that was it. Next the therapists came but we were already on the list for echo so we couldn't get out of line to do therapy stuff so we only saw them for a minute and then the echo tech was ready for us. Rick, as always was so calm, gentle and likeable that Jasiu liked him too, well... until he saw the echo wand... then he got a little angry, uncofortable and just uncooperative. So we tried our old fashioned way (mommy holding Jasiu in her arms the entire time). Well it worked, he was calmer on my arms, took his bottle and began drifting off. My master plan still worked. 1) schedule first appointment 2) tire him out during vitals and all other items 3) hope that he falls asleep during echo. The remaining 30 minutes of the echo were great and Rick took great and accurate pictures.
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| Passed out during his Echo (pic taken after it was all done) |
The next part I wasn't expecting, Dr. H came in to discuss the results of the echo. Instead of the "everything looks great see you in 4-6 months" we got " we have to try adujusting his Enalapril because his heart muscle is thickening most likely because he still has high blood pressure and his heart is working too hard" Basically he explained it his heart muscle is thickening same as any other muscle would if you were lifting weights heaveier than you should and your arm muscles grow, however in the case of the heart we don't want that, we don't want his heart larger than it should be. He didn't say this is extremely bad and it's a similar situation we were in when we were originally put on Enalapril his heart went back to normal after we checked him two and then four months later after the medicine began doing it's job controlling the blood pressure. But instead of outgrowing his dose and weaning off, we must increase his dose because his current is now too little for his body weight. So we will go to 0.6ml 2xD (twice daily) for two weeks and then to his required 0.75 ml 2xD and recheck him in two months. So we will have cardio again in 2 months and another echo :( It's not completely horrible news since a lot of kids with HLHS are on BP meds and it's something we can control but it's not what I was expecting.
Other than that, heart function looks good, his Glenn looks excellent and the regurgitation (flow from lower chaimber to upper caimber is somewhere between mild and medium but the doctor thinks that this may go back to mild once we get BP and heart muscle under control.
So all in all we didn't get terrible news, just a little maintenance changes. Though Jasiu behaved better than expected mamma still needed a full glass of wine this evening to relieve some stress that built up all day today.
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| The stroller is his safe zone, and that is the hospital TV remote |
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