February 5, 2021 (Day 22 in the hospital) Why does the plastic surgeon team have to wake him at 6am taking the surgical bandage off??!! That tape is horrific and it's so painful, not to mention he wasn't even awake yet! Then they all look at it, take 100 pictures and try to put on a new bandage in the dark leaving trash all over the place. Just turn the light on, it's not like anyone is sleeping anyway! OK, rant over. I didn't see it until I changed his diaper around 7:30. I'm not sure what to make of this new incision. It is a horizontal cut coming out of his vertical cut. The surgeon said she took out all the purple, broken down skin but now I see TWO purple spots. It's swollen terribly and stitches are everywhere. I asked the floor doctors later in the day about these purple spots. They reported that the plastic surgical team mentioned being worried about them as well. GREAT! I'm literally going to die if this thing opens again!! So far, it is not showing any signs of drainage, but it also has a JP drain. It didn't leak last time until the drain was removed.
The JP drain is drawing more blood/fluid out than last time. Although it wasn't even half way full, the nurses have already emptied it five time before lunch. We were told this morning that there are no results yet from the two cultures they took in the OR. Around 4pm the nurse came to get a sample out of the drain because she said the one they sent off in the OR clotted before making it to the lab!! I'm about to lose my cool! Dr. Elton said he went into the OR yesterday during the procedure. He didn't see ANY CSF leaking at all and Rayden was upside down on the table, therefore putting pressure on his belly which should have caused more leaking if it were happening. But he said if he spoke it definitively he would probably be struck by lightening when he walked out the door because Rayden is notorious for doing the opposite of the text books! It's about time they realized that!
Rayden has had some muscle cramping today in his legs pretty badly. He just can't get comfortable. We ended up giving him a second dose of Valium and some Motrin. He had a low grade temp of only 100.6. He didn't want to eat or even get out of bed. We did our routine of sponge bathing, teeth brushing, and CHG wipes to try to make him feel better. CHG wipes reduce the spread of infections because they are filled with a cleaning product that kills germs. As long as he has the PICC line he has to wipe with these daily. The science teacher, Andrew, said since Rayden has completed all of his projects already he brought him something brand new. It was a tornado experiment. That made Rayden smile. He really loves doing hands on experiments and making things. He finally got to feeling better around 1pm. He walked one lap around the hall and then ate a big spaghetti lunch. The nurse brought his antibiotic and there went all of his lunch! We have got to make sure he takes the medicine BEFORE he eats. It gags him so bad that if he has anything on his stomach, it is coming back up. Although he did not make it to the playroom, he did enjoy listening to a book read aloud over the phone by Aunt Barbara Pollard. He was interacting with her, answering her questions, and shaking his head yes or no even though it was a pre-recorded video, haha. We did get him to walk a little this afternoon. His legs kept cramping so he didn't walk as much today as days past.
Rayden got a real treat when the Dunn Shriner's Clowns dropped off gifts for him. They brought so much I had to get a wheelchair to bring it all upstairs to him. They brought balloons, tons of snacks, clown cookies, drinks, a huge present and even brought his favorite Pizza. He had the most priceless reaction when he opened the present. It was a framed, autographed photo of all the clowns. He immediately asked if we could hang it in his room. He had a special video chat with two of the clowns and he just couldn't get over why they didn't have their makeup and wigs on (haha).
We just can't thank everyone enough for thinking of us during this trying time. Without your love, concern, support, and prayers pulling us along we could not handle this journey.
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