Macsen had a scheduled cardiology appointment yesterday in Pensacola. Everything looks good according to his cardiologist. Still very minimal leakage with his 1 valve - his tricuspid - and no changes. He fussed for the first minute of the echo but calmed down and let Cindy get the pictures she needed - bubbles by Daddy helped. Strange to think I have been lying on this bed, looking anxiously at that same screen of my son's heart since 20 weeks before he was even born.
His oxygen saturations have started to slowly drift downwards - no longer hovering around 84% he now is luck to see 79/80 with dips into the 50's and 60s when he cried and several minutes in the lower 70's recovering from the briefest exercise. We are still on the whole "wait and see" path for when to schedule his next surgery. When he starts staying below 75 is what his cardio said yesterday - maybe around 3 but who can say. Could be next year, could be next month. My hope is we can do it next summer - away from all the cold and flu germs that plague us with the girls in school, and maybe we can have the girls close to help him recover. Getting him up and walking is a big part of the recovery process.
He is 21 months now and since his 1 yr bday his height has slowly been falling off his growth curve. He's always been pretty consistent with weight and height being around 3-4 percentile for children his age but now he has fallen off the charts for height and is around 2 percentile for weight. So we saw an endocrinologist yesterday as well. I think we love him. Probably the best thing he told us was that he doesn't think MAcsen's lack of growth is related to his inability to eat solids and that he is getting great nutrition from my milk. For his height his BMI is in the 90 percentile range and his weight for ht is 50 percentile. So he's a good size girth wise just not height wise - he's vertically challenged. A feeding tube won't make him grow taller - probably fatter which wouldn't be a good thing according to this dr. Music to my ears - seriously. So many experts have told me he's not growing b/c of a lack of nutrition but this expert says not so. I can stop beating myself up now. There must be another reason. Macsen was supposed to have all these labs done - ie blood drawn to test his complete blood count (CBC,) thyroid and levels of growth hormone but the tech, despite digging around for a vein for several agonizing and heart breaking minutes in both M's arms, was unable to get even a drop of blood. I refused to let her try again and we are going for round 2 tomorrow at a different clinic. Hopefully the next person will listen when I tell them he is a hard stick and heating packs really will help find the vein - this one obviously knew better than me - insert expletive here.
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| Blood draw fail = passed out from screaming |
We had a truly magical day at the beach the day before M's appointments. We all spent so much time in the ocean - Macsen sitting on a boogie board riding calmly and happily over the top of all the big swells, the girls bobbing along in the salty water. We made a mermaid out of sand and shells and seaweed then had a great dinner at Peg Leg Pete's. Our hotel was beautiful - the Hyatt near the airport is just gorgeous and the kids LOVED the indoor heated pool, modern decor and breakfast. A perfect day
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| Sandy the Mermaid |
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