Arianna's battle with atypical pneumonia

Arianna got really sick at the end of winter. I knew something was really wrong but when we took her to the ER they did a chest x-ray and said she was fine and sent us home. Three days later at her follow-up peds appointment they told us she was diagnosed with pneumonia in the hospital which wasn't true. Apparently, her initial radiographs were read normal but the final results showed pneumonia. Needless to say for 3 days she was just sitting at home getting worse. This is how sick she was..

She was on 4 liters of oxygen and still barely holding sats at 90.

Right after taking this next picture her heart rate begin to drop into the 30's and she almost coded on me. SCARY!

Thankful for an amazing pulmonologist who spoke with me constantly via email and phone we were able to keep her out of the hospital and cared for her ourselves. It was 24 hour care and it was very exhausting..
but I wouldn't of done it any other way. She is my life, my love and I am so thankful God gave her to me.

First smile after 10 days!!!

I thought we were finally rounding the corner..

Then she got worse.

Thank God for my mom. She would come work from my house so she could help us with Devin. Even with the 3 of us there we had our hands full. If it wasn't for her I don't think I could of gotten through those 2 week. She cooked dinner, cleaned, took care of kids, let me shower and cry on her shoulder. Thank you Mom for all that you do for us.

FINALLY she was doing slightly better and wanted to color. It lasted a few minutes but it was a start.

My hands were a little full. :)

My mom and Arianna in the kitchen baking cookies. Yes..she's in the highchair. Only way we could get her to sit up. Man, her color was pretty bad now that I look back at her pictures.

She even asked to do some scrapbooking! That's my girl!

Just when we thought we were going to fall over from exhaustion...

That's right..my little boy decided to get in on the action. Devin's very first breathing treatment.

The lady came out to check our equipment today and everything checked out fine. We got a new lead for the pulse oximeter but she didn't bring extras. UGH!! We can only get 2 a month per our insurance which is SO stupid. So basically the reading we were getting yesterday were probably correct which means something is going on with her little lungs.

I did talk to the pediatrician that was working yesterday, not our doctor, and she told me to do the Albuterol treatments every 4 hours if she was wheezing. Of course she is no longer wheezing but be is still satting on the low side. I checked her when she was taking a nap this afternoon and she was at 87% so I hooked up the O2. Then when she was eating dinner I checked her again, since this is the only time she is sitting still and she was satting at 90%. She normally sats around 94% so this is a little concerning. I would understand if she was coughing and showing symptoms of a cold but she is not. So we'll keep up with the O2 during naps and at night. I have completely misplaced the cloth tape I need for her face so I'll be running out to get some more.

Our pediatrician is in tomorrow so I'll put a call into her first thing in the morning and see what she wants me to do.

Thanks for checking in on my girl. I finally bought some batteries so I'll post some pictures later!

Worries of a heart mom

Check out my new toy!

I hope this makes sense cause its pretty late.

We received the pulse oximeter today so I started recording Arianna's saturation levels. We need to get baseline sats to know what is normal and what is not. The first reading was right before her afternoon nap which read 94%. I decided to keep her connected through her nap so I could get an idea of where she sats while sleeping. She immediatly went down to 91% then stayed at 90% for about 30 minutes. She dipped down to 87% a few times but came right back up, so not sure how accurate that was.

When she woke up she immediatly went up to 93%. I let her down to play and she was very calm at this point, barely crawling around. She stayed between 88-95% while playing. As she woke up more she started getting up and taking steps, standing, and moving around more. She immediatly started desatting and went all the way down to 84%. This kind of freaked me out! Any heart mom can relate. So I took the darn thing off cause I REFUSE to let a monitor control my life. I think having this machine is a good and bad idea for me.

The whole reason for the pulse oximeter in the first place was to see if she desats when eating. So I got dinner ready and man was she HUNGRY! I get so excited to see her scarf down food. She ate 3/4 of a hotdog and 1/2 cup of spaghetti. That sure was a new experience having a pulse ox machine at the table. She stayed at 90% while eating with occasional drops to 88%. There was 2 drops to 84% which was when she was drinking from her sippy cup.

We finished our night playing on the floor and waiting for Daddy to get home from work. She was so tired but she was able to stay awake just in time to see Daddy. That was all she needed to make her want to stay awake. Normally in the evening Arianna does her walking from Mommy to Daddy so I wanted to hook her up and see how she does doing actual walking. She was resting at 93-94% while sitting in Daddy's lap then as soon as she started walking back and forth her levels dropped. She stayed in the 80's the entire time with the lowest number being 84%. So this is now freaking me out. I know I shouldn't be but it is.

So the things running through my mind are:

1. If she is desatting like this when walking, shouldn't she be on oxygen? Her sats were at 84% when the doctors decided it was time for her surgery. One thing I do know is that it's not good to have lack of oxygen to the brain.

2. How low will they let her saturations get before needing to do some kind of intervention.

3. Is the pulmonary valve conduit the next step for Arianna?

So if any of my heart moms have information they want to share with me on this, please do so. I guess it hit me tonight like a ton of bricks that just because we made it through the first surgery doesn't mean we are out of the woods. This is something Arianna will have to deal with for the rest of her life. It just breaks my heart when I think of that. I would give anything in this world to change places with her. I honestly don't think I could handle another open-heart surgery. I pray to God that isn't something that needs to be done in the near future. This is the hardest part about her condition is that no one can give me a timeline on when she needs a valve placed. They said it could me 1, 3, 10, or even 20 years, it just all depends on how Arianna does. So we have our next appointment with the cardiologist on Feb. 20th and I am now very anxious to find out what he has to say about this. I am refraining from emailing him, but if I notice her level staying low like that when she plays I think I just might have to.

Oh yeah, on more thing, and to top it off I receive a reminder in the mail today about Arianna's appointment with the immunologist on Feb. 1st. I can't believe its already been 6 months since we've seen him last. We will be doing a full panel on her to see how her immune system is functioning and find out if we get the clearance to give her the live vaccines. I am believing that her numbers will all come back good and we can do yearly visits from now on.

Think thats about it. We are meeting with Sherri, early interventionist, tomorrow so always excited to show her what Arianna is doing. I think she might of found us a speech therapist finally!!! I'll let you know how that goes.

Oh yeah, Arianna got her RSV shots today and was such a trooper. I have decided from now on to take suckers for her on those days. I feel so bad cause she just screamed every time the nurse came near her. At the end the nurse was having me check her temp and connect her blood pressure cuff. So on the way home I had to stop and get her McDonald's. She had 4 french fries and a few bites of a chicken nugget. The look on her face when she realized we got french fries was priceless! Wish I had a picture of that, but I do have a picture of her drinking from her first juice box!

I think I like this McDonald's thing!