Cardiology Appointment

This morning was Arianna's cardiology appointment. It had been 3 months since our last appointment, which is the longest we've ever gone between visits. Arianna had a blast playing in the playroom in the waiting area...yes I let her play in there. This was a first and I have to say I'm very proud of myself for letting her go in there. I still used hand sanitizer like very 3 minutes but she'll just have to deal with that for another year until I can calm down....if that's even possible.

First thing we had to do was a weigh in and the tech was going to put her on the baby scale and I had to tell him she was too big for that and can stand on the big girl scale all by herself. Okay...drumroll please...... Arianna weighs 21 pounds 12 ounces !!!! Of course she had a diaper and her clothes but either way she made her big 2-0!!! We will be celebrating tonight with some yummy cake!

We waited in the room for a very long time and Arianna got bored with all her toys. The nurses were all great and keep bringing her stickers, crayons and pages to color, and stopping in just to say hi. Originally a different cardiologist came in and he took one look at her chart and said, "I've never seen Arianna before." I said, "No, we see Dr. Klewer." I was really looking foward to see our cardiologist. You see we got to a childrens clinic that has multiple PC's and they normally schedule 2 or 3 to come at a time. I always schedule when Dr. Klewer is there and he is really good about coming in to see us. So after I told the other PC that we see Dr. Klewer he asked if I wanted to see him instead and of course I said yes. But the look on Arianna's face when see saw Dr. Klewer was priceless. This man stands over 7 feet tall and Arianna just loves him. He is SO good to her and does everything at her pace. He gives her the stethscope and she puts it right on her chest. She sits very quitly on my lap and just looks at him directly into his eyes with such trust its incredible to watch. I'm so happy this will be her doctor for a very long time.

It has been 9 months since her last echo so we had one today. I have to tell you I was a little worried about how she would do since she is older and doesn't sit still.

Waiting for her echo

My mom brought her Ipod with her and thank goodness because she didn't like that gell on her but the second we put Dora on for her to watch she calmed right down. She did really well and the echo took only 5 minutes.

The results of the echo were great! The very first thing he said was he could see a little bit of the pulmonary valve?!?!? What?!?! This valve was something the surgeon made out of her heart muscle and was told at our last echo that is had completely disappeared, which was expected. I've been praying for a miraculous healing and for God specifically to create a pulmonary valve. The second I heard this news I knew it was the work of His hands. This is just the beginning of good news for my baby girl!!! The rest of what I'm going to say might be confusing but my heart momma's should understand. I just hope I can explain it correctly but I'll give it a shot. She shows mild pulmonary stenosis with a pressure of 1.9 in her pulmonary arteries (normal is 1.5) I did get alot of information today so I hope I got it all right.

I think that about covers it all. Then I started crying when our PC told us we didn't have to come back for 6 MONTHS!!! I have been waiting for the day that we could go 6 months without a cardiology appointment and that day is finally here. I can't believe we don't have to go back till Febuary 2009...that's next year! We get to celebrate her 2nd birthday, Thanksgiving, Christmas, and the New year without having to worry about her heart. Of course, if something comes up we can go in but I just know she will do great and won't need to see anyone. Besides we have an amazing pediatrician who will keep up with us in the meantime.

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.