June 30, 2009 by Brooke.

So we never did get a surgery date.  As expected, UVA wisely wanted to do an echocardiogram and EKG at their clinic at UVA before deciding anything.  That appointment was today.  And boy, she did REALLY well today.  She cried during the EKG (as usual, she hates the stickers they use all over her body), but they wisely had Dora the Explorer on in the Echo room, so she totally zoned out during that, which allowed them to take their time and really get some great pictures and measurements of everything.  Of course she had a doctor and two med students in her room for the consult, so she clammed right up and barely talked to them at first. The doctor was really sweet and gentle, and she was great about answering his questions.

The news is no news, really. We’re kind of back where we were. LOL

After having a really in-depth Echocardiogram, the doctor at UVA said he think the higher pressure gradients they are seeing are due to the VSD continuing to get smaller, not the muscle bundles in the right ventricle (Double Chambered Right Ventricle), so they’re not recommending surgery at this time.  HALLELUJAH! He did say it’s highly unlikely that she won’t need the surgery at some point in the future, but they’d much rather wait till it becomes obvious the muscle bundles are causing the pressure gradient increase, than to possibly rush in, especially since those muscle bundles can sometimes grow back.

They did say her left ventricle does seem to be somewhat enlarged, but they’re just going to keep an eye on it. The valves all look good.

The only thing that was bugging me was he said the left ventricle enlargement wasn’t troublesome because, as he put it, “I mean, it’s not like she’s not growing well.”  THIS is the problem with seeing a doctor who is not intimately acquainted with her case and history.  I blurted out a slightly exasperated (and incredulous) “But she’s NOT growing well.  Never has!” He looked surprised, and then when he plotted out her height and weight, he saw for himself, and had to agree that she’s very small for her age.  Of course her cardiologist and pediatrician know that, and if he’d bothered to really talk with them, he’d know this. I mentioned it to his intern during the exam, as well.  Of course, being that there are short and tall people on both sides of the family, it’s impossible to really tell whether it’s just genetics or heart related (until they fix the heart defects, and she either grows more or doesn’t), BUT he did say that he’d like her to see an endocrinologist to rule out any other causes, like thyroid or other glandular issues.  So we’ll probably set that up through her pediatrician sometime in the next couple months.

So for now, they’re just going to have her continue going to her cardiologist every 6 months instead of every 12, to keep and eye on everything. The “no surgery for now” is a praise for sure, but kind of frustrating, too, because I kind of wish these doctors would talk with each other and get on the same page. This is the second time I’ve had one doctor refer her for surgery, and be told it’s imminent, a year out at the most, only to be told by the other doctor that it could be years.  I just wish they’d get their stories straight before setting us up like that.  Ya know?

Anyway, we’re just going to focus on the reprieve, and be thankful to put if off a while longer.

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June 2, 2009 by Brooke.

Just got back from Jade’s check up with Dr. Albrecht.  As expected the VSD has continued to get smaller, which is good. Valves also look good.  The pressure gradient in her right ventricle is up a good bit, though, which means those aberrant muscle bundles are growing closer together.  She’s not in any immediate danger, or having major health issues, but it is to the point that he feels the surgeon will most likely want to go ahead and remove the muscle bundles either this summer or next to prevent problems - particularly valve failure.  Dr. Albrecht’s hunch is the surgeon will want to go ahead and do it this summer, but we should know for sure sometime in the next week or so.  He said they may also want to have her come down for a more thorough Echo and maybe even a diagnostic cath, but again, we won’t know till after he’s talked to Dr. Peeler - the surgeon on her case.

Her weight has always been on the low side (has her own curve off the bottom of the growth charts, LOL), but her pediatrician noticed that her height curve seems to be leveling out. Not that she’s shrinking or anything, but her growth has decreased noticeably.  So we’re keeping an eye on that.  Could be that she’s just about to hit a growth spurt, but it bears watching, so she’ll be going back to the pediatrician for another well-child checkup in 6 months, rather than the normal year.  The cardiologist also found that was interesting.  Her particular defects shouldn’t really be affecting her growth at this point, but he said you just never can tell.  Different kids get affected different ways. The only way to know if it’s just genetics or her heart defect is to see whether or not her growth picks up after surgery or stays the same.  None of this is an exact science. LOL

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