Final MRI report

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.

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!

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!!!

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..

Cardiac MRI & Lung CT Scheduled

I just got the call from UMC to schedule Arianna's cardiac MRI. Man, was that a hit in the gut. I knew it was coming up but I hate when I get those calls. She was suppose to have this done at the end of July but they are booked so she is scheduled for August 15th at 10am. I am working on getting insurance to approve the CT for her lungs as well. If all goes through then she will be wheeled to the CT machine right after her MRI so we don't have to put her under twice. She does have to be put under general anesthesia so this is why I get nervous. Anytime your child has to be placed under its not a good experience. Praying that since she is older and I can explain things to her a little more that it won't be as scary and she will wake up from it okay. Last time she was delirious waking up and I pray it doesn't happen again. I guess what scares me the most is the fact that this test will indicate whether surgery is needed right now or not. It seems alot of our heart friends are having surgery so that just means our heart kiddos are growing up and with that comes heart tune-ups as I like to call it. Whatever the outcome may be I know that I have to put it in God's hands!

How I like to spend my Sundays

Sometimes I like to take Arianna to the airfield where Robert flys his RC planes. Arianna LOVES to go out there. Check out the pictures from today.

I just love those two!

Check her out...working on Daddy's plane!

She was signing "airplane".

Okay Daddy, it's ready for you to fly!

After the airfield we had to head over to drop off our application for a new house. No, we're not buying, but we are trying to get out of our current house. We have completely out grown this house in the 12 months we've been here. It's kind of hard to sit here and think back to what was happening this time last year. I was a complete wreck as we approached Arianna's surgery date. I tried so hard to be strong for her and didn't want her to see me cry. I would do pretty good then I would go to bed and cry myself to sleep just thinking about what my daughter would have to go through in the weeks to come. I am SO happy to be on the other side of surgery. Today I sit here staring at my beautiful daughter and thank God for all that he has done for us. I have such a wonderful life and wonderful family. I know every day is a blessing from God. I may not know what the future holds but I know someone who does and I rather leave it in His hands!

So all week I've really been wanting to go out for ice cream. For those of you that don't know, I've been doing Weight Watchers to get back to my pre-pregnancy weight. We'll I've lost 32 pounds and very excited about that. I look at food in a whole new way. I want to set a good example for my family and provide them with healthy, nutritious meals. So.....when I say, "Hey, lets go to Baskin-Robbins!" You better believe I get some strange looks. I know we need to treat ourselves from time to time and that is exactly what we did tonight. My mom has given Arianna ice cream before and she seemed to like it so I thought this would be a good treat. We got her chocolate chip ice cream and you can tell from the next picture that she liked it! I think she ate 1 tablespoon and I was SO excited! Anything to get my baby to put some weight on...right!

I didn't have my camera but thanks to my camera phone we were able to get a picture of Arianna enjoying some ice cream! She was SO tired. She only had a 30 minute nap today so she was ready to pass out while eating her ice cream. She was so out of it that she ended up falling asleep on the way home.

Tomorrow we are going to see the neurosurgeon to have him review Arianna's MRI that was done of her brain and spine. Our pediatrician told us he is qualified enough to review her MRI and if he feels confident that nothing is wrong than I don't need to go any further. I was really hoping to get a pediatric neurosurgeon to read this but we don't have one here in Tucson. I've sent a letter to a pediatric neurosurgeon in Phoenix, but yet to hear back from him. I have one more option, thanks to an online support group, so I'll try that one next. I'm not looking forward to seeing this guy tomorrow. He has a really horrible bedside manner but everyone says he is an excellent surgeon. Guess I don't have a choice in the matter so I'll just stick it out and try not to let him get to me too much. I'll let you all know how that appointment goes when I get home.