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Eve’s Cath Procedure

It’s so hard to see your child in a helpless position. This was Eve’s first invasive procedure. They’ll be placing two catheters in each groin artery that will go to into her heart. The procedure has two goals. One will be to get additional data like pressures in the chambers. The other will be to potential do an ablation to the extra node that is causing her SVT. Eve has Wolf Parkinson White syndrome, on top of her severe mitral valve regurgitation. The ablation procedure will hopefully stop any SVT (Supraventricular tachycardia) for good, and help her recover from the scheduled valve repair for Monday.

It was hard to let go this morning…very hard.

Update: We just got a call that they have the catheters in place, and successfully have taken the pressure readings. Now they’ll be looking for the errant pathway (node) that causes her SVT. It might be another hour or two.

Update: she’s out of surgery, they did the ablation, and got rid of the pathway. 90% chance for no more SVT.

Eve’s Echocardiogram in Boston

Eve’s Echocardiogram in Boston, originally uploaded by TaulPaul.

Yeah, I like gadgets. This pulls together information in a very visually compelling way. The echo tech didn’t know I was recording, but it’s probably not that big of a deal…I only broke HIPPA laws for my own kid. No biggie.

NWA Airline Snacks

NWA Airline Snacks, originally uploaded by TaulPaul.

Cathy, our NWA flight attendant gave us two of these trays of cheese, crackers, and grapes. She told us: “you won’t have time to find something to eat, so take these.” You were so right Cathy. It hit the spot.

Eve’s First Flight

So here we are about an hour to Boston. Eve has her pulse oximeter hooked up under my feet, and Annmarie is holding an oxygen mask near Eve’s face. Her blood oxygenation kept dropping to 87%, so we have to keepthe mask near her face the entire flight. It’s Annamarie’s turnnow so I’m using the wordpress iPhone app to get this update out. NWA has been very helpful during the flight. Thanks guys, especially Cathy for the extra snacks and help.

A trip to Boston in April

I’m taking a trip to Boston between April 7th and April 23rd.

We’ll be in Boston for two weeks staying near Children’s Hospital Boston for Eve’s surgery. Any peeps around are welcome to visit.

Eve’s Trip Plans

We have a lot of people asking what’s next for Eve. A lot has happened in the past few weeks, so I’ll run you up to speed on what we know.

Eve at the hospital 3 weeks ago

Three weeks ago, Eve was retaining fluid around her heart. She was having trouble eating, and you could see retraction in her stomach when she was breathing. This prompted our Cardiologist to admit her to the 5A unit of the University of Minnesota Medical Center, Fairview, a place we have become very familiar. The doctors were able to monitor her closely, and adjust her current set of medications, while adding another diuretic to help her get rid of the fluid build-up.

While there, we made the decision to try to get a transfer for her surgery at Children’s Hospital Boston. Eve has a window of 2-4 weeks to get a procedure done. She looks completely normal, and it is very hard to tell she has congenital heart failure. This obviously is erased when you see the number of medications we give to her, on average, four times a day. We track and triple check everything. There’s a whiteboard in our kitchen dedicated to this schedule, and it’s constantly changing.

Eve's Whiteboard at home

If you ever find yourself in need for a top notch Pediatric Cardiologist, Dr. Lazaros K. Kochilas is above exceptional. He’s been very thorough in Eve’s care, and has the patience to answer all of our questions, which we have many more than normal. We would refer him to any friend with this type of need.

So here we are, leaving for Boston on Tuesday, April 7th. We’ll be out in Boston for around 2 weeks. We’re not 100% clear what is going to happen, but we’re positive this is the right decision for Eve. I’ll be updating everyone on her progress in this blog. We appreciate all the good thoughts and prayers coming to Eve. It all helps.

Eve Updates

Eve UpdatesOur newborn Eve has some heart problems. I plan on using this to update my family and friends.

I will be trying to update this Seesmic video thread with any new happenings.