February 1-3, 2021 "Why won't this thing heal?"

February 1, 2021 (Day 18 in the hospital)  Rayden is doing better taking his medicine. We didn't try to mix it with anything else, that makes more volume anyway. I told him he had to take it to kill the bacteria in his body. He didn't seem to understand that so I told him he would have trees growing out of his back if he doesn't take the medicine. 

He, again, woke with no appetite. We met our goals again (sponge bath, walking, playroom). The science school brought him a soap experiment that kept him occupied for a few minutes. He loves science. The Ronald McDonald House brought him some Fruit Loops that he so excitably ate!! 

*This morning Dr. Elton felt he could go home today but he wants to see him next week. He has lots of restrictions at home and is believed to have good and bad days ahead. He, of course, cannot go back to school for a while. He has to build his strength back up and his incision needs to heal better before exposing him to anything else. He can sit on his bottom but still does not need to lay flat on his back. He can shower but not soak in a bath tub. We are also encouraged to just use our soap-lathered hand over his wound not using a rag or sponge in fear the stitches will grab hold and pull. 

*Infectious Disease also thinks he can go home because his CRP levels are down from 156 to 19!!! Wow, what a dramatic difference! Although the Sedimentation Rate was super high. It is suppose to be no higher than 15. His is 33. It takes a little longer to go down though. They also want to see him next week.

*Plastic surgeon interns are still concerned about the purple area on his incision and the continued drainage. They believe the purple area is going to die off and scab away. Luckily they layered the skin over the spine this time, so they believe the second layer will now become the outside layer. At least they don't believe it will open all the way back up! Apparently they seemed more concerned than they let on because the actual surgeon, Dr. Damitz, came to see him herself shortly after they left. She touched the puffy side of his back and clear fluid just oozed out of his incision near the purple section. She jumped back and said she was going to talk to Dr. Elton about that. She's afraid the fluid collection under the skin may actually open the incision back up. She even mentioned getting more images and cultures. 

Around 2pm I changed the dressing only to notice there was a little hole at the third stitch from the right just over the purple spot. The nurse paged the neurosurgeon intern who came, took a picture, and pressed the skin to see it oozing liquid. She is going to talk to the Plastics team and Dr. Elton to see what the new plan should be. They say they need to weigh the risk of going back into surgery vs waiting to see what happens. Dr. Steven Papas even came back to pray over Rayden. Obviously, we are not going home today. 

February 2, 2021 (Day 19 in the hospital)  

The plastic surgery team refuses to send Rayden home with that pinhole in his incision, especially knowing what happened the last time. They ordered a test of the fluid leaking out to see if it is Cerebral Spinal Fluid (CSF). That test takes three days to confirm. The nurse tried to get some fluid this morning but she couldn't figure out the best way. Then the floor doctors came and collected a drop or two, but that wasn't enough. I think it's because the plastic surgeons pushed a lot this morning. It was agonizing for Rayden. He squeezed his Daddy's hand and cried for Daddy to help him. We can't take much more! A few hours later, the nurse brought in some Oxy for Rayden because the neurosurgery team was coming to collect some. They decided they couldn't collect any more either. We just hope they have enough to run the test properly. 

Dr. Damitz, plastic surgeon, has decided to schedule him for reconstructive surgery Thursday. She is hoping to have the CSF test back by then but wants to move things forward instead of just laying here waiting and waiting. She feels like if we are not making progress we need to do something and she wants to figure out why this is happening. She plans to cut out the purple section, culture the inside, clean it out, put in a larger drain, and make sure he is on the correct antibiotics. This is kind of another exploratory surgery where she is hoping to figure out what the underlying reason is. 

Dr. Elton was upset that this is happening. He said if the fluid is confirmed CSF then there were lots of different avenues to take but he didn't want to cross those bridges just yet. That alone is scary enough! 

They say sometimes you win some, and sometimes you lose. Right now we're losing bad. I just don't know how much more of this Rayden can take. I hate the thoughts of him going back into surgery again, and the pain and agony he has to endure. That's 3 surgeries in 3 weeks!! WHY????? They say it only takes a little faith to move a mountain. Well, good thing a little faith is all I have right now! Just when he starts feeling better they knock him back down and he has to start all over again. He was actually walking today WITHOUT us holding onto him. His little personality is finally coming back and he's talking to everyone. And now this! I just don't understand why he has to go through so much. I know there is a reason for everything but I can't help but question right now. 

February 3, 2021 Day 20 in the hospital)  Last night Rayden just couldn't get comfortable. He actually asked us to rotate him several times. His left leg and sides continue to cramp. I wanted to get him some pain medicine but he refused saying, "I'm fine, Momma." He is such a WARRIOR! I tell him this all the time, even though he tells me he is not. Anybody who has to fight the battles he has, is a warrior in my book. I've posted this song before and its just so appropriate for him. When he falls down, he gets stronger. 

 

Rayden was super excited to receive his favorite food for breakfast today. Nanny and Pops dropped off Bojangles. We had one excited little fellow. They also dropped off our mail from home. Rayden received many Get Well cards. He enjoyed opening each of them and hanging them on the wall. 

He has his little personality back. He stops every person in the hallway and holds conversations with them. He's become pretty popular around here. Everybody know him by name. I was even told the nurses actually fight over who gets to take care of him. Not surprising to me..He is one special kid! 

The doctors added oral Vitamin C and Zink to Rayden's medication list. They hope these vitamins will promote healing. They also took blood to prepare for surgery tomorrow. Luckily his PICC line is still in place so they didn't have to stick him. We did our normal routine of sponge bath, walking, playroom, and science projects (making flowers and a fairy house). Rayden is walking so very well. He doesn't need us to hold onto him at all now. His left leg is turning in pretty badly and his feet are hitting each other when he walks but he is still pretty stable. He just needs more time to get everything back together but he will have to start all over again tomorrow! That breaks my heart. 

I changed his dressing around 12:00 only to notice it was coming apart even more. You may have to zoom in on the picture to see. Under the third AND fourth stitch from the right. The purple area has now become black so I'm glad we are not waiting any longer to do something. Surgery is scheduled for 7am.