Monday, March 15, 2010


Sigh. I guess Ava felt left out? She mistook a hospital stay due to illness as a "milestone" she needed to meet? But really baby girl, did you have to catch both(supposedly) at the same time? Did you really have to have respiratory distress mommy hasn't seen since your first few months? Months that were filled with words like CPAP, CPT, breathing treatment, lung disease, etc. You know Ava, she goes big.

SO, Tuesday afternoon we went to the park with some close friends. Ava was super excited ALL morning to see her friends, especially "Loogie" which is Ava's way of saying Logan. Bouncing off the walls, driving mama bonkers until it was time to go. We get there, she's playing but rather suddenly gets super clingy and kind of just looks done, drained. Probably an hour later we are at home and Ava falls asleep so fast. Now if you know Ava you KNOW this girl NEVER slows down to nap unless she's sick. She wakes up probably 2 hours later and has a temperature and a cough/pretty bad runny nose. We treat the temp as needed and keep an eye on diva.

Next morning, more temp, more cough, more snot. Crap. :( Ava takes another nap that day and her appetite is definitely decreased. I continued to keep a close eye on her, but really it just seems like a bad cold so I am not too terribly concerned. During that night and into the next morning, Ava starts breathing rapidly. We didn't get much sleep that night, making sure she was okay. The next morning when she wakes the temp is finally down, she is happy and more like her normal self so we are thinking YAY! Then she falls asleep and is asleep for a LONG time. The breathing starts getting worse, and I notice she starts retracting. So that evening we take little miss into the local children's hospital ER.

We got a bed in the ER rather quickly, which was impressive. There we go through the usual questions, and the OH MY's explaining Ava's cardiac history. Overall I am extremely impressed with the ER and the staff there. They got her in right away, asked all the right questions without too much repetition, and started tests immediately. The only thing that really angered me, was the IV situation. It just should NOT take 6 blown veins and 8 pokes to get an IV. I realize she has lots of scar tissue(please don't comment on how you can tell she's been poked quite often nurses, it only brings back terrible memories and feelings), she was dehydrated and "heart kids are always hard pokes anyways." It's no excuse to treat a child like a pincushion. If you aren't confident you can get it, PLEASE call someone more apt to do it. Don't sit there and poke and prod on a small child who is very alert and already terrified, it's extremely traumatizing for them and anger-inducing for their parents. After way too many tries, I told them they needed to be 100% confident or back off before poking again. They called in the transport team who got it in 2 pokes. Usually they get it on the first try. Word to the wise and something for mom to remember next time, have them call transport FIRST. Not only did they get the stick quick, but they were HONEST with Ava. They TOLD her it was going to hurt, but that it would be brief and let her know WHEN they did it. No surprises, which actually helped. And afterwards, they gave Ava stickers. When you're 4(basically), and obsessed with princesses, an Aurora sticker makes EVERYTHING better. Loved them.

We got a bed up on the good ol' 7th floor, in the good ol' East PICU. Yuppers. The exact place Ava spent just over 2 months of her life before coming home for the first time. And yup, she still always has over a handful of nurses that remember her and are amazed at the little girl that failure to thrive, barely 8lb, 3 month old baby girl turned into. :) In fact, our first night there Ava had the same night nurse she had VERY often on her first stay, the first nurse to receive a smile from Miss Ava, Michelle. So nice to see her and know what great hands Ava was in.

That first night we were also told first that Ava's lungs were clear, no changes from her last xray. GREAT! But then a different doctor comes in and says it looks like a small bit of pneumonia and we start antibiotics asap. The next day the best cardiologist pokes his head in just to say hi and reassure us that this has NOTHING to do with Ava's heart. And also playfully lectures Miss Ava on her need for attention landing her in the hospital. ;)

Later doctors come by and tell us that Ava is all clear, her white blood cell count is normal, which means no infections! And again someone is saying that they don't think that little tiny "questionable area" is pneumonia and that we should be good to go home the following day.

There was some drama, but I honestly just don't want to go down that road again. This hospital just again proved why I will always be a nervous wreck and on my toes watching and double checking every one's every move when it comes to my daughter and that place. Never fear going over heads and questioning. Not only is it your right, but it's pretty much your JOB, especially for those of us with "special needs" children, though I really dislike that label.

Anyways. Ava came home Saturday morning and has been doing well. The first day home she was showing signs of trauma. Which is the most heartbreaking thing to encounter. She freaked out at bath time and with touch. I had to slow down and explain what I was going to do before I did it or she just started screaming and backing away. :( The first night home was filled with lots of terror and screaming for me. But luckily she didn't take too long before she was comfortable and trusting again. Atta girl. :)

Thank you to everyone who was there for us, even if it was just through sending me encouraging messages, emails, etc. Especially to my dear hubby, who seriously still amazes me with how committed he is to his children and family. Those who helped watch Gregory, helped me get to the hospital, those who offered to keep us company, feed us, etc. YOU guys help me more than I can ever express, and I am truly thankful to have so many people who care so deeply for my girlie.

Lots of love, and promise next post will be a happier, cuter one! ;)


Stefenie said...

How scary! Glad that you are all home! Saying many prayers that Ava continues with her recovery from her illness and it will be back to fun times for all of you!

Michelle said...

Sorry you all had to go through that but glad to hear that Ava is home and feeling better! Hope she continues to improve and remains healthy. Looking forward to the happier post but I do like her carseat, what kind it is it?

Hugs -

Anonymous said...

Poor Ava girl :( I'm glad to see htat she recovered well! Thankfully spring and summer are just around the corner and we get get by with less sickies around! Give that Missy a hug for me, even is the hospital she is still as pretty as can be <3

connie and adam said...

I found your blog from another one. Your daughter is pretty. My son also has a chd called tricuspid atersia also known as HRHS his blog spot is