Pulmonary Function Tests

 Arianna had her PFT's done a few weeks ago. The nurse, Darcie, was so impressed with how well she did. Normally they don't do this test until the kids are about 10 years old but because we are trying to figure out what is going on with her lungs we wanted to give it a try. She had to do 3 different tests. One of them is the one to the right and is very simple, like the one she does in clinic. Deep breaths and blows until her lungs are empty.

 The second test sounded like popcorn and I was suprised she wasn't scared by it. She had to hold her cheeks as the mouthpiece would cut the the airflow on and off. You can see she follows direction very well here. It also helps that Darcie is the same nurse that does her tests in clinic and she has had alot of practice with those tests already.

 The next test is in "The Box" and I was not sure how she would feel about that one. She did GREAT! She has to follow more detailed directions for this test. At one point the machine will cut off the air flow and she has to keep breathing. We did it a few times but she got it down!

 

RESULTS

She has both obstructive and restrictive asthma.  Obstructive asthma means the flow in and out of the air is impaired. Restrictive asthma means her lungs are small and do not fill up well. The elasticity is not working well. 

We continue to do the Pulmicort twice a day since this is the best treatment for now. However, this does not really answer the unknown question of why the base of her lungs look so bad on CT and xray. Also why she gets so sick and easily gets pneumonia. We are concerned that a GI component could be at play so that is our next step.. 

More tests

Two months after she was discharged we are FINALLY getting her pulmonary function tests and swallow study. Tomorrow is the swallow study and next Monday is the pulmonary tests. We are still trying to get her holter monitor approved to check her heart rhythm. Her cardiology appointment in February was good except showed some PVC's on her EKG so we want to follow up on that. The QRS wave was actually showing a lower number than 2 years ago..THANK YOU GOD! So we are not even talking surgery at all this year.

Hospitalization January 2012

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5th Birthday

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...