Monday, May 4, 2015

For the King of Brave to Remember

I never planned on starting a blog about all of this CF stuff, but it all kind of came about over these past few months and now I am so glad I did because I have gotten a chance to record stories for the kids to have later. So this one is still fresh in my mind and I remembered to take pictures so here is Orson's picture diary of his surgery.

Walking into the hospital carrying the backpack he packed for himself the day before.

Got through all the pre-op stuff. He even convinced the nurse to take his blood pressure on his leg instead of his arm because he freaks out when the machine squeezes on his arm. His nurse gave him his little Mickey doll and said he could keep his balloon hat. Besides starting to get hungry he was in great spirits.

Surgery is over and Orson has calmed down. We are in Orson's room. Frank looking out the window to see the MCC Institute building where him and I met. Not that he was probably thinking about that when I took this picture though. It was another blessing that the PCH surgeons were out of our insurance network so we ended up doing the surgery in Mesa which was such a huge time and stress saver.  

How thankful we were that he was able to sleep. He would wake up to find his bed moved by the push of a button, which clearly was very thrilling.

Charles let Orson take his "cloud blanket" with him to the hospital so he snuggled with that a lot of the time. He was surrounded by friends in his bed.

When he woke up and got his bearings in the room is when he asked me if I thought he had been brave for his surgery. Frank always tells the kids that he is the "king of the castle" and they are "dirty rascals" so because of this Orson is always trying to find something he can be the king of. When he asked if I thought he was brave, and then asked if he could be the "King of Brave" I was in 100% agreement.

That morning of the surgery we happened to pull up next to the gas pump across from a very special friend of the family who proceeded to drop off a grab bag to my Mom at our house later that afternoon for Orson. When Mom brought the kids to visit that evening she brought the bag with her. Every piece of treasure in the bag was incredibly appreciated as distractions for Orson.

We were reading David Shannon's "Alice the Fairy" as our first nurse was in the room. The book mentions Alice making her Dad a crown and Orson talked about how cool it was. The nurse heard him and minutes later brought in this crown for him. It was perfect for the King of Brave.

We were shocked at how visibly the adrenaline and joy of the visit from Maelee, Charles, and Bebe brought Orson. He started playing ball with them and moving around like a champ. Just what he needed to feel a little better, and just what we needed to see that he was acting normal. They helped him forget he was hungry.

The sibs were also impressed that the bed moved with the push of a button.

Orson toted all his lines over to the window to see outside with Dad and play with his glow stick from his grab bag. He picked Dad to stay the night with him so that they could have a "camp out" in the hospital and "talk all night."

When Orson found out that he wasn't allowed to eat dinner or even popsicles like he planned on, he got satisfaction out of feeding his Button Bear some food that he had packed unbeknownst to us.

Many of the things that he packed where things he asked for to eat at breakfast.

He was NOT happy that they had put his IV in the hand of the thumb he sucks, or as we all lovingly refer to it his "bugger hand" since he always sucks his thumb and picks his nose at the same time. He likes to have Frank hold his "bugger hand" when they walk together and then laugh and say "ha ha Dad you are holding my bugger hand."

He found a way to make it work but was not happy about the board they had taped to him. I have to give them lots of credit though because that thing got lots of abuse and held the line the whole time.

I got back to the room around 5:00am and had a box of donuts waiting in the car to bring up as soon as they said he could eat. We had been told that they would try to get a hold of the doctor or surgeon in the night sometime to clear him to eat breakfast. They when I asked at 5:00am they hadn't done that, but said that she usually makes rounds early between 6 and 7am. He woke up at 5:30am and was starving so again we used the grab bag as much as possible for distractions. These were really cute birthday animals that he got to build, but you can see how miserable he was in this picture waiting for the stinking go ahead to be able to eat.



That morning's shift change brought a no nonsense nurse to our room who proclaimed herself to "have no filter" and she was not afraid to track down the doctor and surgeon come hell or high water to get Orson some food. She was successful and he finally got to feast. When we showed him the menu of the hospital cafeteria there was a cartoon drawing of a little boy juggling pizza, hotdogs, and other cartoon food items. Orson pointed to the picture and said he'd have what that boy was having.
This same nurse acquired Orson his own wagon and got him permission to ride around and see some trains downstairs after he got food in his belly. She even let him unhook from his IV so we wouldn't have to drag around the pole. He took a popsicle for the ride as well.




This is our amazing no-nonsense-no-filter nurse letting Orson take off his IV and being so careful and kind to him. She made sure he remembered to remind her after his practice tube feeds were done to have her take him to the toy closet. After she left we teased him that maybe it was a broom closet and not a toy closet and she needed him to do a chore before he went home.

 We were wrong though, it was after all a toy closet and he picked a Mickey Mouse bowling set.
He got to ride out to the car in his wagon and the only super sad part about leaving was he didn't have an electric bed anymore. Before he left he jacked it up as high as he could though, for one last ride.

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