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!

Tests are scheduled

I just got off the phone with the pulmonologists office and they scheduled the CT's and bronchoscopy for April 8th. I was hoping to get this done sooner but they need to have two blocks scheduled for anesthesia since she will be having both tests at the same time. I just put a call into her cardiologist to let him know about the CT and find out if she needs antibiotics before the scope.

Arianna has been doing great. She is getting so good with her walking and even starting to run. She has been sleeping alot better since we put her bed next to ours. I have to admit I LOVE having her sleep right next to me in her own bed. I can reach my arm out in the middle of the night and feel her breathing, which reassures me that everything is ok. She hasn't needed oxygen the past 2 days...YIPEE!! She is not eating like she was last week but I'm hoping that will pick back up soon. We saw the nutritionist on Tuesday and Arianna weighed 18 pounds 8 ozs, which is a 4 oz increase since last month. She is slowly gaining but at least we're gaining!

Hope you all have a wonderful weekend!

In agreement...well sort of

After talking things over with Robert we both agree that the CT scans and bronchoscopy need to be done. We don’t know what put her in the hospital and if there is some underlining problem then we need to know about it to prevent another episode.

I did hear from the pulmonologists office today telling me the first available slot in on April 8th which is the same day as her appointment with the pulmo doctor. I told her the doctor wanted it done before we saw him and if we had to reschedule the April 8th appointment that would put us probably another month out which I don’t want to do. I rather get it over and done with so I don’t have to stress about it anymore. She did mention that they have an availability next Tuesday but she is still pending the bronchoscopy referral, so she will be giving the insurance company a call tomorrow. She also said we will have to stay the night in the hospital because they want to do a pH probe on her. I didn’t understand why he wanted this test done when the doctors in the hospital decided not to do it. She seemed confused herself and asked a lot of questions about the hospitalization. I explained that Arianna had an upper GI study along with a swallow study to rule out aspiration and silent reflux. The pulmonologist did mention possibly doing a pH probe but after the GI studies came back normal it was never mentioned again. (But then again they pulmonologist only saw us once so it’s possible the attending never knew about his plans) We don’t think they need to do this test because she has already had numerous tests showing she does not have reflux but maybe there is another reason for doing this test. If they do decide to do the pH probe I will be requesting a cosult with the doctor before subjecting Arianna to all these tests. So....the pulmo nurse will be emailing the doctor since he is out of town and see what he wants to do. I am having some issues with the times they do the tests since Arianna would have to fast. I’m praying they will have an early morning appointment become available. Don’t want to mess with her eating since she is doing so well with it right now.

Well I better go to bed since we have an early morning appointment with the immunologist. Ugh…probably be heading to the lab after that appointment. Poor baby…seems like she is always getting stuck with needles. ☹

Just when life starts to feel normal...

Isn’t it crazy how things can go from completely boring to having me in panic mode. I just got a call back from Arianna’s pediatrician and she received a response back from the pulmonologist regarding Arianna. He wants to have a CT of her lungs and heart along with a bronchoscopy (scope of her lungs) before April 8th appointment. So…here I am freaking out once again that she has to go under general anesthetia. Why can’t things stay calm for more than a week. We won’t know when these tests will be done, but we know they will all be done at the same time. When we were at the peds office last week I told her I did notice a slight change in Arianna’s energy and eating habits since being off the O2. She mentioned this to the pulmo and he suggested putting her back on 1-1.5 liters of O2 at night. But of course since we’ve seen the peds last week Arianna’s eating and energy has seemed to get a lot better. So basically its up to me, if I feel she is having a sluggish day then I am to put her on O2 at night. I have been checking her sats every other day and she remains in the mid-high 90’s which is right where she needs to be.

So my feelings right now…well I guess I’m wondering why they still want to do the CT and scope since she is doing so well. But then again I know there could possibly be something going on that we cannot see on the outside. We still don’t know why she went into respiratory distress and was hospitalized, requiring her to be on oxygen for 3 weeks. Its just so hard to put your child through something like this when they are doing so well.