Double switch it is...

7:10pm
It's been a long day filled with doctors, nurses and the army of other people who have continuously been invading Abi's room asking the same questions.
Since Abi returned from the cath, she has been sleeping for the most part of the day. She didn't eat until 4pm- for 13h. Once she started she drank 5oz of cherry flavored pedialite she'd never had before.
Anyway, we spoke with her surgeon and he chose to go with the double switch TOMORROW! Not longer than yesterday he wasn't really keen on doing this now because she is so small! Her systemic valve though leaks a lot so there is no point in waiting longer. We haven't signed up for that- that's for sure. The surgery will last about 8-9 hours and starts at 7.30. Along with the double switch they will be closing her vsd. It's going to be an even longer day. Probably the most terrifying, nerve wracking and .... The worst day of our lives. Our precious little girl will undergo a huge open heart surgery. Just this morning she was all smiles, cuddly and joyful and no one could tell her condition is so bad.
She will probably stay in icu for a good week, then a week or two in the perdiatrics... No, that's definitely not what we came here for... I'm hoping and praying for the best... Home for Christmas? Let's take one day at the time.
J.

Change of plans

11:01am
So here we are, waiting for Abi to come out from the cath procedure. She was taken there





at 9:30am and we just got an update on her. Fortunately, she's sleeping all the time and she just got some more sudation, so she will not be scared. The reason for cancelling the surgery at the last minute and going with the cath was that her saturation is in the 70-80% instead of 90s and the echo showed no overcirculation in the lungs. They are trying to find out what to do next. There are a few options: 1. Replacing the severely leaking valve only or with closing VSD (right now its 7mm). 2. Doing a double switch now. 3. No surgery for now. The answer to that we'll know maybe today. They mentioned a heart transplant but this option would buy her no more than 20 years (statistically) of life with 2 heart transplants and then it would be "the end of the road" as the doc said this morning.
Apart from that, Abi is doing exceptionally well, she is so easygoing and patient. Sometimes I think she understands more than we think.
She's handling this much better that mom and dad...

Jo

No surgery in the morning

Late update

We got to the hospital at 9am. We met many people; cardiologists, phisicians, Cardiothoracic surgeons, anasthesiologists and some others. After answering many many questions, having Abi go through heart echo, chest x-Ray and blood work, we were out of the hospital after 7 hours. Abi did great though they wanted to get good pictures with the echo and they sedated her. This caused her blood saturation drop really bad and they had to give her some oxygen. After all of this when we got home they called us saying they didn't like some of the tests results and they don't want to do the surgery in the morning. They want to do a cath, a line driven up one of the veins to her heart to measure everything from the inside. Once they have more info they will discuss what they are doing next.

We don't know what they will do nor what the next step will be. We
have to be in the hospital at 7am and don't know what next. We will keep you updated.

Artie

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We're here...

Finally, granda at home safe and sound and we after 5h trip filled with 4 stops and some adventures-emergency stop to buy a paci we forgot to take for Abi,we reached Atlanta at 10pm. Abi did great during the trip and at night, though found herself most comfortable in my arms, for the first time refusing to sleep in her bed.
Now,we're heading to the hospital for the preop and to meet all the docs , and find out what the plan 4 2morrow is.
We'll post more as we know more....
Thank you for caring 4 Abi ...
Jo.

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Dedication

Abi's Dedication was yesterday...

I am so proud of Abi and thankful for my awesome family. They mean a world to me. Pastor and the Church prayed for a total healing of her heart.

The surgery is next Tuesday...

I had a dream that night that we all went there and the doctors listened to her heart and with astonishment claimed her heart sounds normal. I don't have a clear image of the end of this dream... but I'm still hopeful and still praying Abi will be a great testimony of a complete healing that will leave people with amazement of what God can do...

 

4-monthversary..

It seems like a moment but exactly 4 months ago (17 weeks) I saw my precious daughter's face for the first time. I will never forget this moment...

I can't believe she can sit up, talk, play and do all the cutest things.
I also can't believe that in exactly 2 weeks she will be in a recovery room after her very first heart surgery... brrr...

Abi is by far my favourite person in the whole wide World....

Happy 4-monthversary my Dear Abi!!

PA Band

We found out today about the upcoming surgery in Atlanta..

It's scheduled on December 8th. We're leaving on Sunday, December 6th, after we see off my mom at the airport. Pre op is on Monday.

On Tuesday, they will be putting a band over the Pulmonary Artery to restrict the blood flow going to the lungs.

http://www.med.nus.edu.sg/paed/resources/cardiac_thumbnail/surgery/pab.htm

It's been a surreal day and unfortunately there are more to come...