Pneumonia AGAIN!

We sent Arianna back to school the week after her cath and she came home sick with a runny nose and her asthma was really acting up. So I pulled the nebulizer out and was very proactive with it.
She had Friday off which I was happy about so we let her rest up. She was better by the next week. So we sent her back to school.

She only goes to school Mon, Tues and Fri..but when she came home Tuesday she was running a fever. After 4 days of a fever the coughing started so out came the neb. On Monday she was looking sick with no signs of kicking it soon so off to the pediatrician we went.

Chest x-ray showed perihilar opacities consistent with viral pneumonia or pulmonary edema. YEAH..you better believe I was getting nervous. I called cardiology and pulmonology and both felt that it was NOT pulmonary edema but pneumonia. THANK GOD! You see pulmonary edema would of meant she was in heart failure. Even though we are not happy about pneumonia it is our better alternative.

She started on azithromycin and doing Xopenex nebs every 4 hours as well as increasing her Flovent inhaler for several days. Withing 24 hours of her first does of antibiotics her fever stopped! She is still having trouble at night with the coughing but I'm going to do a midnight neb to help with that. Her sats are staying high which the pulmonologist says because we have been doing the preventative steroid inhaler! Good thing we did that this winter!! We are trying hard to get her better before her birthday party on Saturday. I can't believe my baby will be 5!!!!

So here we are the day before Thanksgiving and she is doing great! Still doing our nebs and will finish the antibiotics on Friday. Devin decided to get in on the action and spiked a fever o f 102 last night and still having ALOT of head congestion and runny nose. Daddy even decided to get in on the action and is sick but of course he went to work. Such a good Daddy! I'm flooding my system with medicine so this head cold doesn't get any worse. WE WILL BE HEALTHY!!!!

Heart Cath - October 31st, 2011

Arianna on her way to her first heart cath.

Thanks to Child Life Specialist she had an iPad to play with when she got there. Helped with her anxiety a bit.

Child Life Specialist helping Arianna decide what smell she wants in her anesthesia...She choose watermelon!

Arianna's cath got bumped back so the Child Life Specialist was helping us pass the time.

Then that dreaded time approached and I was able to take her back to the cath lab. She was terrified! Clung to me and cried to not be made to do it. She buried her face in my chest and I had to pry her face away and pin her to my chest to do anesthesia. WORST experience with putting her under. When her body went limp...I left her in the hands of the anesthesiology team and cried...

We waited an hour and then Dr. Sampson came out and said she did great! No left pulmonary branch stenosis so nothing was done. We would be seeing her after she was extubated and go to recovery. On the way, Dr. Sampson looked at me and said, "I have no idea what they thought they saw on MRI but her lungs are getting the same amount of blood flow." I knew at that moment that it ha to be God!

She struggle a bit in recovery so they gave her fentanyl which helped relax her until the anesthesia wore off. Her sats were still a little all over the place but we were wheeled back to the cath lab to finish recovering. We saw her heart sister, Liz, when we were being wheeled back. She came back with us and the most incredible thing happened.

Liz started talking to Arianna telling her how she gets so much strength from Ari when she's in the hospital herself getting procedures done. Arianna just stopped, looked at her with such understanding and peace, her sats stabilized and there was a moment that I cannot truly describe, but we are so thankful for the support of such an amazing friend!

Several hours in recovery watching movies and laying flat.

Grams always knows how to life her spirits!

Finally about 30 mins before we were discharged Devin was able to come see her. She was so happy to see him!

October Update

So things have been rather boring on our end, which isn't such a bad thing. We have pulled Arianna from school and all group activities to keep her healthy for her upcoming heart cath which is scheduled for Oct. 31st.

This was the suggestion from her pulmonologist who knows how hard it is for Arianna to recovery from upper respiratory colds. We did go in for an appointment a few weeks ago and he performed another lung perfusion scan BEFORE having Xopenex and AFTER doing a Xopenex neb and we could see that there is inflammation in her small airways. She's been put on a daily dose of steroid inhalent to help with that and to keep her healthy for her cath. We will reevaluate after the cath to see if the blood flow changes anything.

So for now we just stay home, keep her healthy and wait for the next part of her journey...

Arianna has pneumonia

We took her in last Thursday and the pediatrician said she has pneumonia in the left lower lobe. We started her on Cefdinir and she seems to be doing well. Hardly any need for oxygen. But she is staying home from school and activities. It's Tuesday and Im a little concerned that her sats are not staying where I would like. They were great yesterday so Im not sure whats going on. I'll take her for a follow-up with the pediatrician on Thursday.

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.

1st day of Preschool

I can't believe it...she's in PRESCHOOL!!!!

Sending our baby girl off on her first day. What a BIG moment this was!

Found her cubby and "her letter A" as she said..

What was the first thing she tried at school? That's right..she had to know where to wash her hands. :D

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.

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..

Preschool?!?!

I can't believe it. We are enrolling Arianna into preschool 3 days a week starting in August. Well she will actually miss her first day because her MRI is scheduled on that day. :( I have so many emotions running through me right now. Excitement - that my daughter is alive to actually attend preschool! Fear - that she may get sick too often, or that kids will tease her because she is different, and worried that she won't be able to keep up with the other kids. Anxiety - I won't be with her to help her if she needs something. Will she be able to eat during lunch? (She is a horrible eater) But there is no turning back now..my baby girl is growing up and ready to take on the world!!!

Devin's 1st Birthday

So I am a month overdue posting this but here are the pics from Devin's 1st birthday. I have no idea but for some reason the cake pictures got deleted from the camera. BOO!

Wigs for Kids

The other day Arianna and myself donated our hair to Wigs for Kids. This was something I have been wanting to do with her for a long time. She was so happy to be helping kids with cancer and she was finally old enough to understand and appreciate what we did! I am so proud of her!

Before

After
Arianna donated 12 inches
I donated 16 inches

Proud girl!

Eye Appointment

As you can see Arianna had to wear those gorgeous glasses after her eye appointment today. lol! She was so cute and kept them on too.

Well guess I should tell you all why we were at the eye doctor today. During one of her speech sessions, which by the way we ran out of sessions, they mentioned her left eye was off and we should have it checked.

Diagnosis is strabismus in her left eye. Shouldn't cause any problems but we will keep an eye on it, no pun intended. They had to dilate her eyes, which is why she was sporting those gorgeous glasses. He did not that her optic nerve and vessels around that are larger than most and he feels thats due to her heart defect and different blood pressure. Her vessells are also winding and not straight like they should be. He says it shouldn't cause a problem but something he doesn't see. She has asygmatism in both eyes. This may mean she will need glasses as she gets older but it also does not mean she will..so its just a wait and see thing..again no pun intended. :) So we dont have to do anything but come back in 6 months for a recheck!

Summer Update

We got the CT approved and will have her MRI and CT done at the same time. I have recently requested a second opinion with a new orthopedic doctor regarding Arianna's scoliosis. We have been told the past 2 years that she could get a brace if her curve goes above 30 degrees and at our last appointment he said she was not a candidate for that because its a congenital scoliosis which is not new news to him so that irritated me. Plus there have been many other issues with this doctor so its time to get a new one. We will also be having her immunology follow-up soon (which reminds me I need to call and schedule that) We did get her the pneumovax and prevnar 13 vaccinations last week since they are recommended for patients with chronic illnesses such as Arianna.

Other than that we are doing well. She has not been sick and enjoying summer with her older brother Cyrus. I'm in summer school which is requiring majority of my time so I'm looking forward to my 4 week break coming up at the end of this month.


Oh almost forgot..We got a new car!

AND

Devin has started walking last week. This was from my phone so sorry for the bad video. I'll try to get another video since he is really good at it now.

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!

Arianna's First Ballet Recital

I am extremely proud of Arianna and completing her first year of ballet. She was in the white class and will advance to pink next year. She absolutely LOVES ballet and is even taking summer classes to advance her skills till next year. This was her first recital and I cannot tell you how emotional it was for me. We had just got back from California and she started getting sick on the drive home. Had a slight fever but I knew I couldn't let her miss this. She practiced so hard. This was the first time she was away from us for 5 HOURS!!! She did amazing and remember her dance when others were just standing there she was leading the group. Proud Mama moment!

Waiting for Ari to take the stage

Arianna with Rapunzel

Bepa knows how to entertain the little ones

Grams brought the ballerina pretty flowers!

Ari with the boys

Arianna with Miss Linda (Director)

I won these in the raffle

Arianna, Devin, Bepa & Grams

Arianna, Poppy & Nanny

Proud parents

Arianna with her BFF!

The most amazing man I know..My Papa!

Where's my dinner?!?!?!