An Awesome Day

What can I say, we had an awesome day. 

For starters, we had our favorite nurse last night. She is so considerate of Santi. He managed to sleep peacefully  from 9pm to 6:45am, when blood draw came in. She does her job, IV meds, vitals, etc, she just has the magic touch to not disturb him and I am so grateful for that. 

I've been working with Santi on staying calm for X-Rays, and today it paid off. It's the first time, ever, he didn't scream through his X-ray. I felt so accomplished. On top of that, his X-ray was perfect and clear. 

Practicing for his X-ray 

Since Santi had zero drainage overnight and a clear X-ray ​they pulled his tube this morning. Yay! Within 20 minutes of losing that tube he was more of himself than I've seen in a month. He was SO HAPPY. He just wanted to walk the halls and play all day. 

Playroom!

Then, we were treated to another surprise. Actress Malin Akerman (The Heartbreak Kid, 27 Dresses) was visiting our unit, bringing toys to each child. She was so sweet and beautiful and surprisingly tall.  (I'm 5'9 and she makes me look petite in this photo).  She gave Santi a HUGE box of crayons and a cool coloring book. Santi and I were both thrilled. By the way, I'm glad I actually showered and got dressed today!

The tube is out and we're off oxygen​, so if our X-ray looks good tomorrow then we are one foot out the door. 

Steady Improvement

We are having a great day. 

Santi had another clear X-ray this morning, no sign of fluid. His chest tube had ZERO output in 24 hours. And he was given the green light to resume a low fat diet. Yay for milk & cookies! He's still on a fluid restriction of 31oz a day, so we have to pace ourselves, which is as hard as you can imagine. Try telling a toddler who hasn't eaten in 5 days that he can only have 2 ounces of milk at a time, LOL. He was thrilled to eat low fat/no fat food and have sips of milk throughout the day.  

Happily snacking

We also had a special visitor, Panda the puppy​! Oh man, dogs make Santi SO HAPPY. This therapy dog program has made such a great impact on us. 

Panda the puppy!

kisses

If his output stays minimal while on the low fat diet, then his chest tube will be removed tomorrow or Wednesday. That will be followed by another few days of X-rays to ensure the pleural effusion doesn't return. 

Fruit!

The good news of the day is that Santi can now eat fruit in addition to drinking clear liquids. He has enjoyed watermelon, grapes, an apple and half a banana so far today. Although he's still begging for "cookies," which in his world are actually graham crackers. 

Other good news is that his X-ray looked really good today. Still nice and clear. 

The not so good news is that they are being extra cautious with him. No sudden movements. Which means we are looking at another week or so in the hospital. They want to start food and wean IV diuretics very, very slowly. This is so we don't end up back here again. 

With the holidays rapidly approaching, I can't help but feel sad not to be able to participate in all of the festivities. I don't know if I'll get to send out Christmas cards or if Santi will get a photo with Santa. Maybe we'll do a Happy New Year card this year instead. 

A Better Day

Santi's X-ray looked "fantastic" today, said the team! I saw it as soon as the technician took it and even my untrained eyes could see a huge difference. It was super clear. Getting the tube was hard, but I know it was the right thing to do. 

They are going to stay aggressive with the IV diuretics for another couple of days. Unfortunately his IV isn't looking great, so they'll have to put in a new one today. He's still on a clear liquid diet. They agreed to let him have a lollipop this morning and we are going to try Jello later today. There has been no word on when he can eat real food. My poor guy is so hungry. We went to the playroom and he ate pretend food.  

Preparing his pretend lunch :(

In the playroom