Monday's Memory 19

On the second day post-op, before they extubated him, they performed a Bronchoscopy. They wanted to make sure there were no casts in the airways currently because he would be too weak and in too much pain to be able to cough them out safely. They actually let me stay in the room for this one AND let me look down the scope to see for myself. It was very cool! The airways were clear and we were good to go. They extubated and Matthew was recovering well. He was grumpy though. He had a nurse that even went to the extent of drawing Blue (from Blue’s Clues) on the window of his room with the foamy hand sanitizer to try to get him to smile. It didn’t work. I guess he had every right to be grumpy!


Ready to be extubated!

FREE!

Nurse drawing Blue.

"Blowing" to strengthen and clear lungs.

Brothers come to visit in the ICU.

He was discharged on June 24th, then re-admitted on the 30th. Matthew always says he is fine but he was not. A second Bronchoscopy was performed on July 1st where multiple casts were found in different stages of formation. I have pictures of this as well, but again, I will spare you. They suctioned and vacuumed again and again only to get a couple of them out. This explains why so many die from this. Even the doctors with all of their tools can’t get them to let go. They were sent for testing and came back…chylous origin: FAT. Fat, from food, leaks out into the chest cavity. It forms around the bronchial trees and then at some point they decide to let go and Matthew has to cough them out. Treatment: NO FAT diet! Matthew was not at all happy about giving up sausage for breakfast in the morning. I think that is the thing he misses the most.

Matthew coughed several casts out during our hospital stay. The nurses would parade the casts through the halls and show all of the other nurses because none of them had ever seen them before. They were fascinated. Matthew would draw pictures of a scene outside and sing to the nurses…I think it was “Sunshine, on a cloudy day”…he captured all of their hearts. He kept the child life specialists busy always wanting to paint or create something.


Family visiting Matthew in his private suite.

We got permission from the cardiologist to go down to the sibling play area and get some fresh air. It did Matthew some good to see the sun shining.

Reading...does he look like anyone you know?

Wagon ride.

READY FOR HOME...FINALLY!

We were discharged on July 6th.

We did some fireworks at the house with Sara and her boys that were here to help when Matthew came home on the 6th.

We had been trained to do percussion on Matthew. Basically to beat on his chest and back to help the fluid keep moving so they couldn’t sit and form into dangerous casts and cause infection. We did this four times a day, 20 minutes on each side until he healed well enough from surgery to use a machine – the VEST – a month later. He was actually very excited to get the VEST…it’s a neat little machine that only cost $18,000. Thank goodness for insurance!

Matthew and his VEST.

It was Matthew’s 6th birthday on the 13th of July and we celebrated as best we could. Some very good friends of ours spoiled him rotten with gifts and a wonderful fat free cake that he got to decorate himself with all kinds of candy. He was so happy.

Matthew's awesome FAT FREE birthday cake.

Another summer was gone. The signs of “everything” were beginning to show through now that his life was safe. Our next battle had begun and we didn’t even know it yet.