March 6, 2021 (Day 51 in the hospital)-8th wound vac change
We decided to do a bowel clean out today since weekends are normally very laid back. The bandage is sealed all the way around the wound but we placed a mud flap as well just to be safe. Even though we had all these precautions in place, poop seemed to make it's way UNDER the sealed bandage! Long story short, the plastic surgeon came to change the dressing. They couldn't sedate him because he has been eating today. They recommended Ativan to calm him, but after his reaction last time, Michael and I decided not to give him any because we felt like he would be more responsive without it. The surgeon and the nurse were on his back side, Michael and I on his front, and two child life ladies at his feet. I suppose they thought we would need to hold him down, but we did not! He rolled right over and gave them perfect view of his back. Yes, he cried while she was taking the tape off, but he did not move a muscle. I honestly don't think it hurt him, he was just more scared than anything. Everyone was amazed at how well he handled it and couldn't believe how he actually laid perfectly still. The surgeon said we may try to do his vac change at bedside again Monday. If he handles it this well again without sedation, they may send us home earlier than expected. 
The child life ladies decided Rayden needed a special prize for how brave he was. They came back with a beautiful, stuffed dog that has a remote control. Each time you press the button on the remote, the dog lets out a different 'tooting' sound. Oh, how that made Rayden laugh!! He just laughed and laughed. He couldn't wait to walk the halls and press the button around each person he saw. He named him "POOTles". Yes, he came up with that all by himself! The animal came from a foundation called Andrews Laughing Gas. Andrew fought leukemia and his farting unicorn gave him joy so his family now sends these animals to hospitals in hopes to "make warriors laugh one toot at a time." It certainly did that for our Rayden today.
March 7, 2021 (Day 52 in the hospital)
This morning the plastic surgeon intern said they were going to try to do tomorrow's wound vac change in the room just like we did yesterday. If he does well again, then they would discuss going home for the remainder of the vac changes. If he can't tolerate it, we still have the sedation set for 2pm. The major deciding factor remains...will Dr. Damitz feel comfortable releasing him to home health after all that happened and how delicate his skin is?!?
Michael left around 3pm because he is officially out of vacation and sick leave for the entire year. I'm not sure how it's going to go because Rayden is one of those kids that NEED both his parents to feel safe and comfortable. I am relying on the fact that he is comfortable up here now and knows so many people that we can keep him occupied.
March 8, 2021 (Day 53 in the hospital)-
9th wound vac change
I was amazed at how well Rayden handled the wound vac change this morning. He DID NOT even cry! The nurse, surgeon, and myself were the only people in here. This boy is definitely a WARRIOR!!! One of the nurses put Bacitracin cream all over the tape about 5 minutes prior to the surgeon coming in. She said it would help peel the tape off. It seemed to work, but it left a greasy film and didn't allow the new tape to seal properly but we are hoping it will hold up until it needs to be changed Wednesday. Looking at the picture today, it doesn't seem to be any different to me. As a matter of fact, the two red spots we saw ON the AlloDerm last week are actually NOT there anymore. The intern said this kind of wound would take months to heal!! She also thought the bubble we saw under the skin yesterday is actually just a muscle in his back. It seems that one side of his back is stronger than the other so it looks different to us with the bigger scar.
Since Rayden proved how strong he was, they started the ball rolling for us to be discharged. There are a lot of things that have to be in place before we can leave. 1-Take the PICC line out, 2-get a rented wound vac, 3-get a forward walker with wheels, 4-find a home health agency to do wound vac changes, 5-talk to Dr. Damitz about all of this.
Around 2pm the nurse mentioned she needed to take out the PICC line. We were eating lunch so she told Rayden she would come back but gave him permission to start pulling the tape off. Well, that's all she needed to say. Before she could get out the door he had already pulled it half way off. She told him to hold on until she got back with the bandage. She returned with a cleaning solution, gauze and bandage. I have never seen a PICC line being removed before. It was just like an IV but 30.5cm long! It just kept coming and coming. This frightened Rayden and he cried a little. The nurse held pressure and placed a bandage that needs to stay in place for 48 hours.
Around 3pm Dr. Damitz came to discuss the situation. Although she was very pleased with Rayden's ability to do bedside wound vac changes and not need sedation, she will not release him until the granulated tissue has covered the entire AlloDerm. Due to his complex history, she is hesitant to give up control of the situation. The case manager came while Dr. Damitz was in here and reported that she has spent all day trying to coordinate with home health to see if anyone would do pediatrics in our area. She called 6 agencies with no luck. This just reaffirmed Dr. Damitz decision to keep Rayden here. The intern even mentioned letting us go home but come back twice a week for vac changes here, but Dr. Damitz wants to stick to three times a week. She said we have made so many gains that we cannot risk it getting damaged now. I understand, but...WE WANT TO GO HOME!!!! I wish they would quit getting our hopes up just to shoot them back down!
Although Rayden asks me every 10 minutes when his Daddy will be back, he has actually been content today. We kept the same routine of sponge bathing, breakfast, walking, hospital teacher, school work, play room, lunch, more walking, science experiment, and working at the front desk.
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