I just got off the phone with the cardiologist. Got some good and bad news..so lets start with the good. Arianna's right ventricle pressure was at 100, which normal is less than 80. Not too bad for a post tet repair. The docs start to get concerned around 150. Her ejection fraction was at 47%, which normal is 45% so that means her heart function is good! Praise God! He thinks we will follow up with another MRI in 3 years so that was reassuring to think surgery could be postponed that long. :D
The not so good news...each lung should get 50% of the blood flow from the heart. Arianna's right lung is getting 80% and left lung is getting 20%. Looking closely at the MRI they believe they see a narrowing of her pulmonary artery(ies). The cardiologist is going to talk with the head of diagnostic medicine to make sure of this finding himself. He has already spoken with the cath doc and he said if this is for sure the findings then she will either need a artery ballooning or stent placed. Since clinically she is doing well this will not be an emergent situation. They are booking caths out into October so our cardiologist wants to get her scheduled ASAP. So we are looking at a cath in October.
Tuesday, August 30, 2011
Thursday, August 25, 2011
1st day of Preschool
Saturday, August 20, 2011
Back to the Blog
I've deleted my facebook account so this will be the official place to get any updates on Arianna. I'm sure you will see alot more posts on here now. Thank you to everyone for caring enough to check in and see how Arianna is doing and praying for her.
Wednesday, August 17, 2011
Cardiac MRI & Lung CT
Arianna was scared driving to the hospital but we made sure to keep her mind off things while we were waiting. The fish tank is always a big help with that!
This is "Coco" her hospital buddy. He always goes with us to the hospital. He's apart of the zipper club as well!
She was in pre-op and starting to get a little nervous but she walked back on her own. Once she turned the corner and saw the table and ventilator and equipment she freaked out...so did I inside. I scooped her up and comforted her till she was doing a little sob. I asked for the mask to show her how to breathe..once she was doing that we attached the anesthesia and turned it on..in a matter of 2 minutes she was out and I layed her down..kissed her head and told her to sleep tight..
We had to keep Devin entertained with the iPod. He was watching a video of his Bepa (my dad) singing and he was in heaven. He just LOVES his Bepa!
MRI and CT took 3 hours total! They said only 2 hours so I was getting really nervous. We had issues with the PACU not letting us in when she got back but apparently she was still intubated and under anesthesia. I told them once she was extubated I would go sit with her but they wouldn't let me. You better believe I filed a complaint about that. We did get in to see her and she was sitting up. She started crying cause she had an IV in her hand and I told her there would be no pokes..but we gave her a does of phenergen and took it out. She did extremely well and didn't throw up once, which is her norm with anesthesia. We were out of there 5 mins after she woke up!
When we left she was asking for food so we stopped and picked up McDonalds at her request.
I actually received a call from her pulmonologist before we even got home. He is an awesome doctor! He said her lungs look better than her last CT at 1 year old. She did have atelectasis but that is common with intubation. She lung sacs look good so she probably just has mild interstitial lung disease which means its affecting the lung wall instead of sacs! Great news!
She was a little tired for a few hours but by the evening was asking to go on our normal bike ride. Told her that she couldn't but we could do a walk..I couldn't believe it!
I got an email last night from her cardiologist and he saw the preliminary report which showed her right ventricle pressures to be around 100 ml/m2 and they don't get worried until around 150 ml/m2. He will let me know when he gets the final report. So I take that as good news and no surgery!!!
This is "Coco" her hospital buddy. He always goes with us to the hospital. He's apart of the zipper club as well!
She was in pre-op and starting to get a little nervous but she walked back on her own. Once she turned the corner and saw the table and ventilator and equipment she freaked out...so did I inside. I scooped her up and comforted her till she was doing a little sob. I asked for the mask to show her how to breathe..once she was doing that we attached the anesthesia and turned it on..in a matter of 2 minutes she was out and I layed her down..kissed her head and told her to sleep tight..
We had to keep Devin entertained with the iPod. He was watching a video of his Bepa (my dad) singing and he was in heaven. He just LOVES his Bepa!
Daddy holding Coco while taking a nap..
MRI and CT took 3 hours total! They said only 2 hours so I was getting really nervous. We had issues with the PACU not letting us in when she got back but apparently she was still intubated and under anesthesia. I told them once she was extubated I would go sit with her but they wouldn't let me. You better believe I filed a complaint about that. We did get in to see her and she was sitting up. She started crying cause she had an IV in her hand and I told her there would be no pokes..but we gave her a does of phenergen and took it out. She did extremely well and didn't throw up once, which is her norm with anesthesia. We were out of there 5 mins after she woke up!
When we left she was asking for food so we stopped and picked up McDonalds at her request.
I actually received a call from her pulmonologist before we even got home. He is an awesome doctor! He said her lungs look better than her last CT at 1 year old. She did have atelectasis but that is common with intubation. She lung sacs look good so she probably just has mild interstitial lung disease which means its affecting the lung wall instead of sacs! Great news!
She was a little tired for a few hours but by the evening was asking to go on our normal bike ride. Told her that she couldn't but we could do a walk..I couldn't believe it!
I got an email last night from her cardiologist and he saw the preliminary report which showed her right ventricle pressures to be around 100 ml/m2 and they don't get worried until around 150 ml/m2. He will let me know when he gets the final report. So I take that as good news and no surgery!!!
Monday, August 15, 2011
Tomorrows the big day..
We take Arianna for her cardiac MRI and lung CT. She has asked MANY questions including, "Mom, are they going to open up my chest?" about one hundred times. I think she remembers me telling her that they had to "put her to sleep" to do surgery so she is scared. She told me she is scared and that breaks my heart. I know its not surgery or anything but the fact that she has to be put under general anesthesia makes me sick to my stomach. The MRI should be about an hour unless the cardiologists needs to look at it more closely and the CT should be 10 mins..its right across the hall so they will wheel her across. I'll update when I get home..
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