October 19, 2006 by Brooke.

The cath is scheduled for Nov 3rd.

The timing of everything is kind of funny - she had her echo on the day of her originally scheduled surgery and will have the cath done on the day of her re-scheduled (but cancelled) surgery.

I had to kind of be a bit firm in order to get it scheduled. I called the woman who does the scheduling, just to check, and she said she’d ask the doctor in charge of the cath labs. She came back and said the doctor who was to perform it would be out for a while, so they’d have to schedule it for when she got back. So I, politely, but firmly, let her know that the doctor that saw her on Tuesday told us that *because* this other doctor would be out, he was going to have a different doctor perform it so we wouldn’t have to wait any longer than a couple weeks. So, she checked with the doctor again and we got our date.

I want to make sure I am not in any way rude, because these folks are all just doing their jobs, but at the same time, I still want to make sure I am a good advocate for Jade, and speak up when something is contradicting what we’ve been told. The sooner we get this cath done and over with, the sooner we can figure out when her surgery should be (whether that be now or a year from now), and go from there.

Anyway, the catheterization is scheduled for 8:00 that morning and we are to report at 7:00, so hopefully we’ll be able to take her home that afternoon, around 3 or 4.

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October 17, 2006 by Brooke.

Ok, here’s the scoop….we’re back to not knowing what’s going on, and no surgery date. {Big sigh}

We waited an hour and a half past her appointment time to even be seen, but thankfully Jade did cooperate for the echocardiogram, and they were able to get what they needed. Ironically, she seemed to wake up completely cold free this morning - which is the morning she was originally scheduled for surgery.

We were surprised it was just a normal echo - something she’s had done at least three times already, so I’m not sure why they didn’t do a 3-D echo, which is what we thought her cardiologist said they’d do.

Anyway, they came back with the same inconclusive findings that we’ve had with her other echos - Jade has a VSD and may or may not have a pulmonary stenosis (PS). There is a band of muscle in her heart that *could* be a PS, but may not be, depending on where it lies in relation to her VSD.

Sooooo, now they want to do a catheterization to monitor her blood flow and see exactly what is doing what and how much. (Click here for a description of the cardiac catheterization procedure) That will be scheduled sometime in the next two weeks, and will require her to be put under general anesthesia, but it is an outpatient procedure, so she should be able to go home that evening. It’s about 2 hours for the procedure (not including prep) and at least 4 hours of observation, so it’ll probably be at least 8 hours all told.

Now for the fun part…they’ve cancelled her surgery, because this cardiologist just isn’t totally sure she needs it right now and is more of the “only if she really needs it RIGHT now” mentality.

He is not convinced her feeding issues are heart related (as he put it, “some babies just have feeding issues”) and depending on what they find during the catheterization, they may reschedule surgery for a couple weeks past the catherization or may actually delay surgery as long as till she’s 18 months to 2 years.

This cardiologist indicated that he and our cardiologist had talked, but we’ve somehow gone from “She needs it done anyway, and we might as well get it done before RSV/Flu season” to “she definitely needs it done, but maybe not until she’s 18 months-2 years…we’ll see.”

I also don’t understand why these test were not done before now, if that’s what was needed to know for sure what we need to do. Don’t tell us you’re scheduling surgery until you’ve ordered the tests necessary to make that determination. It’s so frustrating to keep being told she’ll have surgery at such and such a time frame, and then to get our minds (and schedules) wrapped around that time, only to have it change for one reason or another, and then to finally be told, surgery really never should have been scheduled in the first place, because they don’t know the whole story yet. It’s like constantly being put through an emotional ringer over and over.

Alvin said that if we’ve learned anything through all this, it’s that our plans mean nothing. Stuff will change. I think he’s right. I have not the first clue why this stuff keeps changing, and why, but I’m sure God has *some* reason for it.

Meanwhile, we still have a child who just doesn’t eat well, and needs to be constantly fed, pretty much every hour, and all night long, in order to get enough food in her each day, and now it’s going to be that much longer till we find out why. That part is frustrating, because we *thought* we had an answer and an end in sight, and now that’s not the case.

The cardiologist we saw today said he could set up an appointment with a pediatric gastroenterologist, to see if there’s another reason why she might not be eating right, but we decided we might as well wait till after the catherization procedure, because that should tell us whether or not her heart issues are causing this. If it doesn’t show that her defects are serious enough to cause her eating issues, then we can look at other avenues, and consult a pediatric GI.

We will still be keeping Jade isolated until her catheterization procedure, as we don’t want that to be delayed by another cold or illness. After that, we’ll just have to see when (or if) a surgery is scheduled.

We’ll keep everyone updated.

I don’t even know what to ask folks to pray for - I guess just patience in all of this and for us to have faith that even if we don’t know what the heck is going on, God does.

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October 11, 2006 by Brooke.

I just got a call from the woman at UVA, and we’ve officially been rescheduled.

She said in addition to the question of whether or not Jade will be 100% healthy, and the question of whether or not there would be a bed available in the PICU, they also want to get a good in-depth Echocardiogram (Echo) of her heart prior to her surgery.

So, her surgery is now (re)scheduled for Friday, November 3rd, with pre-op testing on Thursday the 2nd. In addition, we’ll be taking her in this Tuesday (the 17th) for her Echo at 9:00 a.m.

Alvin said he’d just stay home with Dylan Tuesday while I take her for the test.

So it will be another 3 weeks before she has her surgery, but hopefully she’ll be fully healthy and nothing else will come up. Meanwhile, we’ll have to be even more vigilant about avoiding illness - no church, no children’s church, no parties for the next three weeks. After seeing how easy it is for her to get a cold, and knowing even just the sniffles can postpone surgery, I don’t want to risk it. It’s just not worth it.

In regards to the Echo on Tuesday, they sometimes sedate infants for the procedure, so they’re still enough to get a good look at the heart, but first, they want to try it un-sedated, so they want me to not feed her for four hours before the procedure, and with the hope that feeding her just before they do the echo will calm her. I think it’s good I wasn’t drinking anything when I heard her say that.  I love my daughter and she’s a real sweetie pie, but the thought of Jade being cooperative and still for anything, whether hungry or fed, is pretty funny. One of the biggest struggles we have with Jade is feeding her, so bottle or breast, it’s never a “calming” thing for her. If they can’t get her to be still enough, we’ll have to schedule another time (wasted appointment, wasted time off for Alvin, wasted co-pay) and then they’ll sedate her for the second attempt. So, please pray that Jade falls asleep and/or is cooperative for the echo on this coming Tuesday.

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October 10, 2006 by Brooke.

I went ahead and wrote the UVA Heart Center’s nurse coordinator to ask about the cold, how soon would they have to make a determination, and what criteria they look at for determining whether or not she’s healthy enough for surgery (runny nose? cough? fever?).

I just heard back from her and she said it’s fate that I wrote her today. She was just about to contact me and tell me there’s a chance they’d have to reschedule her surgery because several babies were just born at UVA that have urgent surgical needs, and so the PICU could be full next week.

She also said that even a runny nose next week can be enough to postpone surgery because, unless they’re sure it’s allergies, it’s a signal that she’s in a weakened state and they don’t want to do what is considered elective surgery (since she’s not currently in a life or death situation) if they can hold off till she’s healthier.

So, we’re still in a bit of a holding pattern, but there’sa good chance that her surgery will be postponed for one or both reasons. She said to keep her updated on Jade’s progress and whether she starts getting better or worse over the next couple of days.

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October 10, 2006 by Brooke.

Dylan started showing signs of a cold after we let him go to Children’s church the last Sunday, and since then I’ve been trying to keep Jade from getting it, but she’s got it.

(Public Service Announcement: Parents, please don’t bring sick children to church. You just don’t know who might get it - directly or indirectly - and how it might affect them. )

So far it’s just a stuffy/runny nose and crankiness, so I’m hoping that she’ll be better by the end of the week, and I can keep it from getting into her chest or turning into a sinus infection. I’m flushing her nasal passages with saline and using a bulb syringe to keep her cleaned out.

This could possibly delay her surgery if the cold gets worse. We’ll have to play it by ear. I’ll probably stay the course till about Thursday and if she’s not seeming like she’s getting better, I’ll call the doctor and see what she thinks, if she thinks Jade is healthy enough for the surgery, and then let UVA know what she says.

Of course, if she’s too sick for surgery, then that’s how it’s got to be. No sense subjecting her to major surgery if she’s in a weakened state.

So we’ll just see what happens. In the meantime, if you would, please pray that Jade will get over this cold, or whatever it is, quickly, and that it wouldn’t end up being anything more serious, like RSV.

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October 2, 2006 by Brooke.

Can you believe it? Only two weeks till we head to Charlottesville for Jade’s pre-op stuff.

Jade had her 4 month appointment today, and nothing really of note. She’s between the 5th and 7th percentiles for weight and almost 50th for height - so she’s definitely growing length wise. She’s on target or ahead on all of her developmental milestones.

Still not eating the best, but her weight gain has been pretty steady, even if on the slower side, so I must be managing to get enough in her. I try to feed her pretty much every hour - sometimes more than once an hour, so I think that’s doing the trick.

Since her immunity is not what it should be, and even a bad cold could postpone her surgery, we’ve been trying to keep her away from the general public. No Wal-mart trips or church for me and her, and we’ve also been avoiding larger gatherings of people. If she and I go out, it’s to the doctor’s office, or just having a couple friends over for a meal, as long as they’re cold and sickness free. I’m kind of a homebody anyway, so it hasn’t been too bad for me. Alvin’s great about getting anything I need him to pick up on his way home from work.

Anyway, that’s it for now. Keep the prayers coming.

Here’s two pictures we took of Dylan and Jade “camping” in Jade’s room. Dylan surprised me by saying she could camp with him, so we let her lie in the tent just long enough to get the picture. As you can see she’s *quite* taken with her older brother.

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