February 6-7, 2021 "We were wrong!"

February 6, 2021 (Day 23 in the hospital) 

Today has been pretty uneventful, thank God. We had to do a bowel clean out because he won't eat. We have been extra cautious making sure we change him quickly not allowing anything in his incision. We have had some close calls on the bandage and tape but luckily not seeping in. The plastics team said the volume from the drain yesterday had increased from the day before so they were not taking it out just yet. The plan is to have a controlled exit for the drainage instead of allowing it to pool under the skin which may force the incision to come open again. The wound looks exactly like it did yesterday with those two purple spots but some of the swelling has gone down. The wound culture came back negative with no bacterial growth but we are still waiting for the CSF leak test. 

We did our daily routine of sponge bathing, teeth brushing, CHG wipes, and sitting in the chair. The leg cramping was very minimal today so we were able to walk some and go to the playroom. The science teacher brought him a 'make your own snow' kit of which he thoroughly enjoyed. He also did some snow painting. We try very, very hard to take his mind off of where he is, what has happened to him, and the pain he is in. Every time he sees the drain and every time we change his diaper it all comes flooding back to him though, and he breaks down in terror. He really doesn't have much strength or stamina and takes an afternoon nap every day (unlike him). It's going to take a while to get back to where he was before all of this happened. 

 

February 7, 2021 (Day 24 in the hospital) 

Well, we THOUGHT Rayden was doing so good that he would go home tomorrow but WE WERE WRONG! The doctor came in around 6pm saying the culture that Dr. Damitz took 3 days ago is now showing a candida fungus. Thank God he still has his PICC line because they are now going to start an IV antibiotic called Micafungin, once a day for a couple more days. Around 6:30 the nurse came in with the medicine so we got him back into bed and changed his dressing only to notice a pin hole in the incision. I took a picture and zoomed in only to notice there might actually be 3 pinholes! I honestly don't know what to do at this point. I'm at a loss here. I mean, we want to trust that the surgeons know what they are doing. We are at one of the best hospitals in NC. They are suppose to have the education and knowledge to do what's best. I don't know if anyone could do any better, but that's just it...I DON'T KNOW!!! I'm gonna sleep on it, and pray about it, but I think we are going to ask for a second opinion in the morning.