*Plastic Surgeon intern came in this morning saying Rayden has a strain of fungus that she hasn't seen in the entire six years she has been here! She acknowledged that if strange things are going to happen, then apparently they will happen to Rayden. She told the other interns that Rayden is their new textbook. The fungus that he has is called Candida Lusitaniae. It is very, very rare and pretty resistant to treatments. Although I was upset with the holes in his back, she said the incision actually looks better. She thinks the hole we saw is just a fold in the tissue between the skin. She used a q-tip and poked in the hole. She saw a separation in the overlying skin but there is underlying fascia (tissue between the skin layers) that looks in tact. The tissue underneath looks red and healthy so that's good news.
*We are so thankful that Dr. Damitz actually did a culture in the OR and we now have a reason as to why his wound won't heal. She also stated that Candida Lusitaniae is an unusual yeast that needs an antimicrobial not antibiotic. She believes the holes we saw are top layers of skin not deep layers. While she was in the OR, she brought skin over itself so she really doubts it will open up like it did before if we kill the fungus. She still thinks we do not need a wound vac because that will keep the area moist. Fungus flourishes in moisture so she wants to keep things dry. She was also wondering where he could have gotten this fungus. She thought maybe because he was on antibiotics for so long, they killed all the good bacteria in his body allowing bad things to come in but she didn't have a 100% accurate answer to explain. She wants to give it more time to heal itself and agrees to getting a second opinion from Dr. Wood.
*Infectious Disease returned with a second crew that said "I can't believe all of this is happening to this kid!" They are still waiting for the CSF leak test to come back but they believe switching him from Micafungin to Fluconazole is a good idea. It gives better coverage, less resistant, and comes in oral form. They also said they don't see this kind of fungus very often.
*After finishing all these appointments, our morning routine and playroom time, Rayden had a zoom meeting with the hospital school teacher. She made a slide show that went over the letters in Rayden's name and numbers 1-10. He really enjoyed her short lesson and I was glad to see that he hadn't forgotten everything he learned. Soon after lunch Andrew, the science teacher, came with a new crystal mining dig for Rayden to complete. This boy was super excited. He worked on that for hours. Every time he found something he would scream, "Mom, look at this priceless artifact!"
Things changed pretty drastically from this morning. At 6am the plastic surgeon intern said Rayden was looking good. His incision is scabbing over now that it is dry. I'm still a little concerned about the opening on the left of the scar but they keep saying it is ok because the tissue underneath is in tact. He should be finished with the antibiotics today and only taking the Fluconazole for the fungus. They even mentioned going home tomorrow!!
After our wonderful trip to the playroom we were met in the hall by one of his doctors. She had been looking for us. The CSF leak test came back POSITIVE! She wanted to tell us ASAP. She apologized over and over and then said she was going to discuss this with the team and would come back later with a plan. The infectious disease team came in shortly after. They stated how all the ID docs were having a conference tomorrow and he was the topic for the day. They want to make sure he is on the appropriate antibiotics and need to decide how long to keep him on them. They agreed he looked well but they don't want to under treat him so they switched him back to IV Ceftriaxone (antibiotic) and IV Fluconazole (antifungal) because they are stronger than oral. They think it will provide better protection for his CSF to prevent any infection. In other words if the CSF can get OUT of spinal canal then the bacteria of fungus
can get IN. An infection in the spinal spinal canal would mean his shunt would have to be externalized for weeks and then replaced=2 more surgeries. (We've done that before...no fun) Because he throws up the Flagyl antibiotic so much, they went ahead and switched it back to IV as well. THANK GOD he still has a PICC line in place! The nurses have changed the bandage over the PICC line twice so far. That is so very painful for Rayden but it is still better than getting new IV's.
Dr. Damitz, plastic surgeon, is happy with his wound today. She wants to keep the drain in a few more days. She spoke with Dr. Elton about the positive CSF leak. He believes if the wound will dry up and heal the tissue will probably close up the leak so there will be no need for further intervention. In the mean time we are still here a few more days, YUCK!
The doctors continuously asks about Rayden's diet. He doesn't eat veggies so they put him on some vitamins. They asked if he eats meat. That's funny because I've made the comment numerous times that Rayden is a carnivore, meat is all he eats! They were glad to hear that because your body needs protein to help build and repair muscle, skin, and other body tissues. Protein also helps fight infection, balance body fluids, and carry oxygen through your body. So guess what Rayden got for dinner tonight, steak!! Thanks Aunt Jan and Uncle Allen.
Rayden got some glow sticks from the play room last night and Daddy helped him place them all over the room. When the nurse came in he told her to turn off the lights and then yelled, "Welcome to the party room!" He's so funny. I don't know how he keeps his humor and smile during all of this. He is now hooked to an IV pole all day long. It has kind-of pulled his spirits down a little.
He woke up not feeling well, but after a sponge bath his day turned around. He got some new items from the Ronald McDonald House and child life. He completed a zoom meeting with his hospital teacher, and enjoyed a dino excavation kit from Andrew, the science guy.
Rayden enjoyed going to the playroom, and time with his hospital teacher. But the highlight of his day was having a FaceTime chat with his classmates and some of his teachers. When their short conversation was over, he stated how much he wanted to go back to school because he missed his friends. He hasn't been to school since before Christmas!
The doctors say Rayden's incision looks great. Even though the JP drain is barely draining any fluid, the plastic surgeon wants to keep it in as long as possible. She says every drop that comes out is one less to pool behind his incision. The infectious disease docs are fine with switching two of his meds to oral (Flagyl and Fluconazole) but not the Ceftriaxone. They said he needs this one for better protection because it can penetrate into the CSF. They are thinking about sending us home WITH the PICC line and antibiotics. The nurse brought in a dummy torso and taught me how to change the PICC line bandage and administer the flush. (So technical) Tomorrow they are teaching me how to heparin block him and administer antibiotics. Rayden sure enjoyed the hands on education opportunity.
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