The results are beginning to roll in. Overall the news is good. Thank you for your prayers and all your notes of support for us today.
Elizabeth was a rock star. She was brave and cheerful and aside from waking up crabby and hungry (which she's allowed I guess) she was a delight all day! She had to lie still for 5 hours following the procedure, so it's a great thing that the sound of music is 3 hours 44 minutes long!
So that's the low-down. She remains a unique and quite a medical marvel, and we are grateful that she's home tonight, full of joy and peace, though a little sore at the two entry sites. Tomorrow she plans to spend the whole day with grandma, and as her teacher, I've decided that might just be in the lesson plans.
Goodnight friends!
Love, Matt & Sara
Elizabeth was a rock star. She was brave and cheerful and aside from waking up crabby and hungry (which she's allowed I guess) she was a delight all day! She had to lie still for 5 hours following the procedure, so it's a great thing that the sound of music is 3 hours 44 minutes long!
She rolled with all the events of the day like the champ
she is. We, on the other hand, are out of shape! Matt and I are
pretty sacked after the long day of sitting and waiting, which
probably indicates we're out of hospital practice, which is a great
thing! If you want to know the nitty-gritty, here's my best effort
before I crash...
The heart results are primarily positive: No pulmonary hypertension! She had the measurements indicating PH, but when they measured pressured inside her heart, everything is normal! That's great news!
Now for the crazy twist: Instead she has a pulmonary vein that's dumping oxygenated blood back into the right side of her heart (instead of into her left side) which is what caused the right side of her heart to grow mildly enlarged. (It's doing extra work!) But the surgery to repair it is dramatic (open heart) and since she's asymptomatic, it's not dangerous, sooo we see cardiology every 6 months and watch it...
In the grand scheme, it's better than a PH diagnosis and they got extra pictures of her repaired aorta (from her surgery at 3 days old) and confirmed that her mitral valve and aortic root are stable.
So we are happy with that!
Her liver biopsy results will take some time, but it appears based on the measurements they took while inside, that while the clot/scar tissue remains in place, her portal hypertension is stable! This could be due to the outstanding number of varices she has, so we have to get her endoscopy scheduled to check on those, but this too is a sign of forward progress.
There were some differences in the results of a recent MRI and precious ultrasound of her abdomen, so Matt asked and they agreed to do a repeat ultrasound to answer some questions (Horray for multitasking!) At times if felt like she was getting her 60k mile check up!
The heart results are primarily positive: No pulmonary hypertension! She had the measurements indicating PH, but when they measured pressured inside her heart, everything is normal! That's great news!
Now for the crazy twist: Instead she has a pulmonary vein that's dumping oxygenated blood back into the right side of her heart (instead of into her left side) which is what caused the right side of her heart to grow mildly enlarged. (It's doing extra work!) But the surgery to repair it is dramatic (open heart) and since she's asymptomatic, it's not dangerous, sooo we see cardiology every 6 months and watch it...
In the grand scheme, it's better than a PH diagnosis and they got extra pictures of her repaired aorta (from her surgery at 3 days old) and confirmed that her mitral valve and aortic root are stable.
So we are happy with that!
Her liver biopsy results will take some time, but it appears based on the measurements they took while inside, that while the clot/scar tissue remains in place, her portal hypertension is stable! This could be due to the outstanding number of varices she has, so we have to get her endoscopy scheduled to check on those, but this too is a sign of forward progress.
There were some differences in the results of a recent MRI and precious ultrasound of her abdomen, so Matt asked and they agreed to do a repeat ultrasound to answer some questions (Horray for multitasking!) At times if felt like she was getting her 60k mile check up!
So that's the low-down. She remains a unique and quite a medical marvel, and we are grateful that she's home tonight, full of joy and peace, though a little sore at the two entry sites. Tomorrow she plans to spend the whole day with grandma, and as her teacher, I've decided that might just be in the lesson plans.
Goodnight friends!
Love, Matt & Sara
1 comment:
So glad for good news! She is looking so grown up!!
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