Archive | April, 2010

Yeah for Springtime

Gabrielle is doing really well.  She is still refluxing and puking, but she has been happy and getting stronger.  She now actually pushes up with her feet just the slightest little bit when you hold her in a standing position.  Normally she tucks her legs up all the time protecting her torso from any pain.  Stretching out the G tube area can be uncomfortable and sometimes painful for them so she protects herself as best she can. She still adamantly dislikes being on her tummy for the same reasons she tucks her knees up.  But the therapists force her to do be on her tummy and she is showing slight signs of improvement.

Her eating is still non existant orally, but we are working on it.  We have the feeding team appt this Wednesday to hopefully get this reflux under control. We asked about the fundiplication procedure, which is a surgical procedure (fairly simple) to fix the reflux, but all the doctors agreed that that would be a last resort and they would want to wait until she was at least a year old. She is happy to have the food in her mouth and actually laughs and enjoys the tastes but when it comes to swallowing, the food just sits in her mouth and drools out. She is just so afraid to swallow anything.  Poor thing.

I am anxious to see what the feeding team has to say about everything.  At least Dr. Rao covered his bases and we know these problems are not due to cardiac failure.

Ethan and I were reflecting on this past year this morning.  Last year this time, we were coping with the fact that we were going to have a sick child and that she may not live.  we were also packing up our house and moving 60 miles to be closer to the hospital, family and Ethan’s new job.  As we are planning Gabi’s upcoming first birthday, I was looking through pictures that I haven’t looked at in a almost a year, when she was on ECMO and had her chest wide open.  Feels like it didn’t even happen. That couldn’t have been my child, that couldn’t have been us.  But it was and it feels so surreal.

So much good has come out of her life so far; I can’t even imagine what else God has planned for her.

Love,

Teri

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Today’s appt

Quick summary. Gabi is doing MUCH better today.  We canceled the neurosurgery appt because we/they decided she was feeling better and if the shunt was malfunctioning she certainly wouldn’t be getting better.

Dr. Rao was thrilled with how she looked from a cardiovascular standpoint.  Her BNP number (which measures the amount of heart failure) was down to 240!  A normal person would be under 25, but around 200 is great for her. This means her heart is getting smaller and reshaping itself after the Glenn , exactly what it is supposed to do.

Meds were all held steady until we can get a good feed plan going.  He was OK with the changes I made and we will go with the plan I have come up with to see if she still gains weight and stays hydrated.  The dietician wanted us to add a few ounces of pedialyte a day just to make sure she is getting enough fluid.  If we cannot find a good plan in a few weeks, Dr. Rao suggested we admit her so they can watch her round the clock and figure out what to do for her.

In the meantime, we are enjoying her smiles once again and able to relax for the moment as we know her shunt is OK.

Thanks for all the support and hope everyone had a wonderful Easter!

Love,
Teri

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Happy Easter!

I hope everyone is having a blessed Easter today.  Gabi is having a rough few days. I spoke with the neurosurgeon yesterday (sat) after she has been lethergic and throwing up more often than usual.  Wed and Thurs she was throwing up at a rampant rate then on Fri the vomitting slowed, but she has been sleepy. Really sleepy. She is fighting another cold, so we aren’t sure whether or not these are symptoms of the cold, or whether or not her VP shunt is malfunctioning. The neurosurgeon on call told me to sit tight and watch for any redness on the shunt site, fevers, or her head swelling up/fontanell looking full.  Since we have a cardiology appt tomorrow anyway, we are just trying to enjoy our Easter then head up there and probably get a CAT scan of her head while we are there.  We were told to call at 8 am tomorrow so neurosurgery can find a time to see her. I just love CHW!

We are trying not to freak out but it is difficult not too.  I will update tomorrow afternoon.

Thanks and Happy Easter!

Love,

Teri

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