Presley had a great night, and she woke up refreshed and ready to start our day. She ate some scrambled eggs and drank milk. We are thickening all of her liquids, and she is swallowing much better.
We then found out the plan for the day . . . blood draw, x-ray, and chest tube removal. We weren't sure how she was going to handle these procedures since she is definitely now very aware of what's going on. We got her dressed in regular clothes (she chose her purple tutu dress), and we blew some bubbles while we waited for the blood draw. This is a great activity to practice taking big breaths in and then blowing out. She is getting stronger all the time!
Then Erin from Child Life Services came in to help with the distraction technique for the blood draw. She brought in a special ipad with fun new games, and believe it or not, our little princess hardly even flinched! We were amazed at our girl's bravery! Way to go Presley!
Then it was time for a walk and a car ride downstairs for the chest x-ray. It is so good to be able to get out and explore!
Before we left the floor our nurse reminded us of a test that is done on every patient in the ICU. They are checking to see if each child is positive or negative for a certain bacteria. Apparently, it's not uncommon, and Presley did test positive. So, that meant we needed to be moved to our own room. We are basically being quarantined, and we were also told that we needed to stay out of the public spaces, a.k.a. the playroom. However, we can bring toys and activities into our room. This turned out to be a blessing in disguise. We have an awesome private room with our own bathroom, more space, and even a view. God is so good! We feel like we received a great gift. And as far as the no playroom thing, it's totally fine! Presley hasn't even asked about it, and we have had plenty to do to keep ourselves occupied!
After the x-ray, which Presley handled beautifully, we got to go all the way down to the main lobby and walk around. Presley loved it, and she especially enjoyed the big fish tank.
Once we got back to our room, it was time to go to the procedure room to have her chest tube removed. She got some heavier pain meds to keep her calm, and again Erin came with us to help with distraction activities. The special ipad really did the trick. She did amazing, and now she is tube free! What a relief! She was pretty tuckered out after a busy morning as well as having received the heavy pain medication, so she took a nice little snooze. Our sleeping beauty! Those pink lips amaze us every single day!
She woke up hungry, and David had ventured out to the store while she slept to get a few of her favorites. She enjoyed her Danimals drinking yogurt and her pink milk!
But right after this picture was taken, she started coughing and threw up. Poor baby! We're pretty sure it was a reaction to the pain medication she had taken earlier. We are glad that is all out of her system! She took another little nap, and then she woke up feeling much better. We had to go get another x-ray to make sure everything looked good after the chest tube came out. So, out we went for another adventure. After the x-ray, which looked great, we walked to Starbucks inside the hospital. David and I celebrated with iced coffee and our little one with her favorite chocolate milk!
On the way back to our room, we stopped by 8South, our cardiac ICU, where we spent many a day! What a blessing to have Presley up and out and looking so healthy!
Presley asked for pizza and lemonade for dinner . . . we can tell she is getting her appetite back since pizza is her favorite food! She did well eating and drinking, and her tummy seemed much better.
Our sweet nurse, Tori, came in to check on us, and she let Presley help her clean out her IV. She loved it, and said she is going to be a nurse when she grows up!
We only have one more tube to go, the feeding tube! Hopefully, if Presley can continue to eat and drink well, that can be removed very soon. We saw Dr. Marx today, and he can't believe how good his little patient is looking. There was even talk of possibly going home on Monday. We'll see how the weekend goes, and Presley will have a final echo on Monday. We're getting so close, and we trust the Lord for His perfect timing! God has been so close to us and so kind during this journey. He gives peace that surpasses understanding, and He gives strength in our weakness. We can't stop thanking Him for the hope and healing He has given to our precious daughter! She is a marvel!
"I have become a marvel to many,
For You are my strong refuge.
My mouth is filled with Your praise
And with Your glory all day long."
For You are my strong refuge.
My mouth is filled with Your praise
And with Your glory all day long."
Psalm 71:7-8
