February 12-13, 2021 "Getting better-then worse!"

February 12, 2021 (Day 29 in the hospital) 

It has been a pretty uneventful day. We were able to make it the playroom and complete a snowman craft together. The plastic surgery team still wants to observe him for a couple more days before they agree to discharge. They still have to remove the JP drain. I dread that! The infectious disease team switched two out of three IV meds to oral but he just can't take the Flagyl. We've tried it with all kinds of things. It just gags him so bad that he throws it up every time. I even tried it in the ice cream and almost threw up myself!! They only wanted to send him home with one IV med to be given through the PICC line but they just had to switch the Flagyl back. I hated to do it, but it's just not worth it. That means he will be getting the Flagyl 3X a day and the Ceftriaxone 2X a day through his PICC at home. They are contacting our insurance company to get supplies, medication and a home health nurse to begin Monday. So our goal is...GO HOME MONDAY!!!! 

February 13, 2021 (Day 30 in the hospital) 

Rayden is feeling fine, just a little tired. He isn't complaining about leg cramps anymore and his back only hurts when we change the bandage. There are a few small areas of concern that the plastic surgeons are still concerned about. They just don't want to send us home until they are 100% sure it will not break down and come back open. They also haven't taken the drain out yet. The nurses are teaching me how to administer his medication and heparin in his PICC line in hopes that we can go home Monday. The infectious disease team still believes he will need to continue these antibiotics for more than a week at home. 

We spent the day just trying to find things to keep Rayden entertained while stuck in a hospital on IV meds. He went to the playroom, built with Lincoln Logs, walked a lot, built a bird out of modeling clay, and played video games in the room. All the nurses on this floor know him very well by now. They all stop him in the hall and talk to him (which he loves). They even allow him to push the button on the medicine shoot. 

Rayden loves to walk around checking on all the babies on this floor. The nurses know by now that if they are feeding one of them or if the baby is crying that Rayden is coming. They will hold the baby up so he can see them. So precious. He has become attached to one of the babies here because the mom and dad talk to Rayden as he walks by. They have held Tucker up several times for Rayden to see him and he even pretends to call him on the phone. 

When I think about the roller coaster we have been on these past 30 days it really pulls on my heart strings. Rayden has been through so much pain and agony. 

I am so thankful he feels good enough to play now and isn't moaning in pain anymore. I am so thankful he can sit up without getting dizzy and screaming. I am so thankful he can get up and walk on his own and isn't slapping his feet together and needing us to hold his body weight up anymore. I am so thankful he can smile instead of cry. I am so thankful he is eating and not throwing up. I am so so so thankful his back is drying up and isn't pouring blood and fluid anymore. There are so many things to be thankful for. I praise God for bringing him through all of this. No, we are not on the other side yet, but I do see the twinkling of a light at the end of the tunnel. 

February 8-11, 2021 "WHAT NOW!!!"

February 8, 2021 (Day 25 in the hospital) 

*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. 

*Dr. Elton came soon after they left. He believes a wound vac might help seal the space underneath the incision together and dry it out but he is going to leave wound care to the plastics team. He still believes the skin is just really fragile. He said the only other option would be for plastics to do a big, big surgery and rotate tissue around to the center. He certainly didn't acknowledge the fact that he didn't do a wound culture in the OR and we could have been in front of this thing instead of behind!! 

*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.  

*Dr. Wood, pediatric plastic surgeon, came in to give us a second opinion. She also believes a wound vac in not a good idea. She is glad they kept the drain in place because it is absorbing all the extra fluid. Without the drain the fluid would be bathing the wound and not allow it to heal. Her recommendation would be (if it opens back up) to move some muscle over the area that is not healing under the incision, not just keep stretching the skin. 

*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!" 

February 9, 2021 (Day 26 in the hospital) 

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. 

February 10, 2021 (Day 27 in the hospital) 

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. 

The doctors said they were still waiting for the final decision from infectious disease on how long they wanted to treat him with IV meds. They mentioned he may just go home with the PICC line and they would ask the nurses to teach me how to administer the medication. Dr. Damitz reported that he may need to remain on the IV for another week. His drain has almost dried up so that has to be a good sign. The incision is drying and scabbing over more each day. He only had a few leg cramps today but I believe that's because he can't get up and walk that much because the IV battery runs low. 

 

February 11, 2021 (Day 28 in the hospital) 

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. 

Maybe it helps him understand what is happening to him. (A little late though) I'm so afraid I will do something wrong or, God forbid, he gets another infection. This PICC line goes straight to his heart!! What if there is air in the line or something? I'm not a nurse or health care professional. I don't mind changing the bandage on his incision and I can do lots of other medical things, but I'm afraid of this one. I contacted our insurance company to see if they will send out a home health nurse. 

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. 

February 5, 2021 "Shriner's Clown's surprise"

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. 

February 4, 2021 "Surgery #17-Debridement of back incision

February 4, 2021 (Day 21 in the hospital)  Surgery # 17

I was awake at 3am this morning in deep thought and prayer. Who can sleep with all of this going on? My mind knows God is in this but my broken heart can't help but question "WHY, Lord, does this keep happening to Rayden?" I'm just being brutally honest here. I doubt anyone would feel any different if they were in our shoes. John 13:7 says "You don't understand what I am doing, but someday you will." I believe this and know He has a plan, but it is so hard to walk through this day in and day out watching Rayden fight through so much pain. 

They took Rayden to pre-op around 6am. He knew something was wrong. He kept saying, "I'm not going to the OR." Michael tried to keep him occupied by playing a new game on the ipad. I had to ask the doctors to talk out in the hall of the pre-op because he was getting so anxious. I also asked the anesthesiologist to give him something in his IV to calm him down. He's built up a tolerance to versed, so they gave him versed followed by precedex. He was speaking slurred within seconds and didn't mind them rolling him away at 7:30. 

Dr. Damitz called at 9:00 saying all went well. She even had Dr. Elton step into the OR to look. She said the 1mm hole had already grown to 3mm so something definitely had to be done. She took a sample to send off for the CSF leak test and another sample to send for culture. She took out all the dark spots where the skin was breaking down and completed major irrigation. She did a horizontal incision this time thinking it will close better. She put in a bigger drain this time as well. 

They called me to the PACU about 9:30. He was in so much pain again. There were times where his oxygen levels went down to 80 and I had to hold the oxygen mask close to his face. This made him even more scared. I'm sure he thought I was putting him asleep again. I whispered, "It's momma, and nobody is going to put you back to sleep." He seemed to calm down then. The nurse gave him 5 doses of fentanyl, 5 doses morphine, 2 oxy, and 1 motrin!!!! Nothing seemed to calm the pain more than 10 minutes so she called the doc to get him some Valium. Finally he calmed down so we could move him back to his room. Once he got there he seemed very calm with his pain under control. He even started eating Doritos and drinking Powerade. It wasn't long before Michael noticed Rayden's face was fire red and his body hot to touch. He didn't have a temperature and he's had all these medicine's before so I had no idea what the problem could be. We quickly called the nurse who in turn paged the doctors. With no other symptoms they said to just watch it because it could be a reaction to anesthesia. Luckily, it wore off shortly. 

The tooth fairy visited Rayden in the OR this time. She took his wiggly, front, bottom tooth and left him $3! He was excited to see that. Now maybe he will be able to eat without every bite hurting his mouth. The PACU nurses always give him something special each time he goes through as well. Since he's gone through there 3 times in 3 weeks he has received 2 blankets, a Code a pillar, Marble Run, and Rock/Gem Dig. I suppose that's their way of spreading a little cheer and sunshine at such a dark time in kids lives. So precious. 

I want to thank everyone for their thoughtfulness, prayers, cards, emails, texts, phone calls, and gifts. Please know that we feel every genuine heart. I know Rayden is so loved. 

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. 

January 27-31, 2021 "Trying to recover"

January 27, 2021 (Day 13 in the hospital) Rayden continued to get his IV antibiotics, oral Oxy, Benedryl and Tylenol around the clock last night. It was pretty uneventful until about 2am. He started moaning, screaming, and crying in pain. The nurse gave him Morphine on top of the Oxy but it wasn't touching it. Michael and I rubbed everything he asked but nothing worked. He was complaining about his legs, side, back and even hands hurting. When the time allowed, the nurse gave him Benedryl and Tylenol as well.  By 7am he was in so much pain that the heart monitor wouldn't even register. It just kept beeping and flashing "extreme tacky". 189 was the last number I saw!! After five hours of this and no relief in sight, I asked the nurse to call the doctor. When she saw the pain he was in she ordered more Morphine and called the pain team. By 8am his temperature was 101.3, even ON Tylenol, and he started throwing up. We gave him a little while to settle but soon had to rotate him, wash up the vomit, and change his diaper and PJ's. That took all 3 of us and he was in agony. 

The pain team came and discussed different options. We agreed he needed to continue the Tylenol but they added IV Toradol (Motrin). They also added an IV valium for muscle spasms. He can still receive the Oxy and Morphine if needed. This is plan A. If it doesn't calm down his pain we will move to plan B. After we rotated him the nurse gave him the valium and that really seemed to do the trick. He finally dozed off to sleep. 

Around 1pm Dr. Elton came to check on him. He agreed that we needed the pain team because he could see Rayden was in distress. He noticed some blood in the drain tube but said it looked good. He wasn't sure if Rayden would feel like sitting up this afternoon even though that was the original plan. It may take a little longer than we expected. 

The floor doctors didn't seem too happy about Dr. Elton NOT taking a wound culture while he was in the OR. They have decided to get Infectious Disease involved in hopes to narrow down the infection that they originally saw growing on the culture and which medication they wanted to continue. They are still planning to repeat the X-ray to see the location of the PICC line this afternoon if he is feeling any better. If it is in the correct position they can use that line for blood draws, medication, and antibiotics without having to stick him every single day! If it is not in position they will remove it. Then we have two options. 1-use the three IV's we have and hope they hold out (even though he will still be poked daily for blood draws), 2-be put back to sleep for a Central Line in his chest. Michael and I have decided to do the first option if Infectious Disease thinks it won't be much longer. 

The infectious disease team came and talked with me out in the hall. They believe that since Dr. Elton opened up the area, allowing oxygen to get in snd stop anaerobic growth, maybe that alone helped clear up the infection. They are happy to hear that the bone, cord nor anything else is involved. They compared the wound culture taken before we left and when we returned to the ER. They believe the antibiotic given to him before knocked out the gram negative bacteria because now the second culture is only growing anaerobic bacteria. The anaerobes can be tricky and they can slowly eat away at wounds. The good news is they believe we can stop the Vanc but continue the other two antibiotics but haven't made a final decision yet. They have decided to repeat the urine culture and blood culture. They believe that since the surgeon didn't 'see' infection maybe it is microscopic. She gave me a time line of about 10-14 days on antibiotic. They can't give names to all the bacteria because the plate is showing a mixed bag. They are going to call the lab and ask for the characteristics of those on the plate so they can decide if there is an oral option for antibiotics. 

Rayden hasn't eaten a single thing today or yesterday and will only drink a few sips of Gatorade when taking his medicine. He is on IV fluids to keep him hydrated. He threw up again at 7pm after getting his medicine. His nurse was in here so she was able to help and see the contents. We caught it this time in the basin. At the next medication time I was ready. As soon as the medicine went down his throat he threw it back up. The nurse was in here again and went straight to listen to his chest. She didn't hear any crackles in his chest even though he threw up a bunch of phlegm. 

They finally repeated the x-ray around 8pm. It revealed that the PICC line had indeed moved down but not exactly in the correct position. The floor doctor believes it is in the right atrium of his heart so we are not going to use it for now. They are going to let the radiologist look at it in the morning. She also said his lungs look clear on the X-ray. I hope it is salvageable because we already lost one of the IVs today. 

Honestly, I feel that this has been the worst day so far for Rayden. He just isn't himself. He is so pale, doesn't want to talk, eat, drink, or even watch his pad. I'm so thankful they got his pain under control but now he just lays there, looking in one place, holding Hunter Man. It's very obvious that he is super sick. The problem is...they don't know why!! 

January 28, 2021 (Day 14 in the hospital) We had a busy morning with very little rest between issues. The day started at 5am when they pulled his bandage off the incision. At 6am the plastic surgeon came and put Bacitracin cream on his incision. She also informed us that there was a purple area in the center of the incision that they were going to watch the next few days. (I'm trying not to let my mind wonder into something bad.) The antibiotics have messed his stomach up and causing diarrhea. That would be fine except it got into the incision site again. There was a little blood coming from the incision at one of the diaper changes. Michael and I are trying not to panic. The neurosurgeon pulled out the drainage tube around 9am. That was agonizing for Rayden. She gave him a shot to numb the area then snipped the stitch that was holding the tube. He was screaming the entire time but when she pulled the tube out the entire floor heard him. I can only imagine how bad that hurt. Then she had to put three stitches to close up the hole. Once it was all over the nurse gave him some Oxy and he felt so much better. 

He actually ate an entire piece of patty sausage and a few home fries this morning. Everyone is so excited to see him eating. He even has a little color in his face, doesn't have a fever, is not coughing anymore, and is talking more and more as the day goes on!! The radiologists concluded from last night's X-ray that the PICC line is in the correct place and usable now! PRAISE GOD!!! The nurse immediately drew his morning blood sample and started the next round of antibiotics in there. I was super pleased that he didn't have to be poked again this morning. His arm already looks like a pin cushion. 

The pain team is pleased that the valium seems to be the drug that works best for Rayden. It is a muscle relaxant and calms his anxiety at the same time. The anesthesiologist on the pain team was actually the one in his surgery as well. She apologized for turning his arm into a pin cushion. She explained why he was such a hard stick and encouraged me to always advocate for him by asking for the special team when he needs blood work or IVs. (I've heard that from so many people!) 

The Infectious Disease team came back to talk to us around 11am. They are so glad the PICC line is working now because they want to continue the antibiotics for a few more days at least. They were pleased to see how much better he feels. They are hoping to have more answers by this afternoon. 

In order to encourage Rayden to eat today, we ordered him another Papa Johns Pizza. He ate an entire slice but soon threw it back up when we gave him the oral Benedryl. The nurse realized this was the third time this has happened so they changed the Benedryl to IV. He ate two more slices!

Around 2pm I noticed some bloody drainage all over the back of his diaper. I asked the nurse to page the doctor. This is how things started last time and I'm very worried. The doctor came and didn't like it either so she paged the neurosurgeon.  She came around 6pm and stated that it was probably left over drainage that should have went in the tube before they pulled it out this morning. She believes it will stop but went ahead and put a dressing over it that will be changed every day.  Around 9pm (only 3 hours later) that dressing was completely saturated with blood and was leaking through. I called the nurse who in turn called the doctors. They changed the dressing and assured me it should slow down. I may be a little paranoid but I have every reason to be!! 

January 29, 2021 (Day 15 in the hospital) Rayden slept well last night but awoke again to a team of plastic surgeons and Dr. Elton, neurosurgeon, taking off last night's dressing. Luckily, it had only saturated half of the dressing through the night. They plan to watch it throughout the day and assured the drainage will slow down. Rayden only ate half of a sausage patty for breakfast before the Benedryl took him out for a few hours. We were able to meet our goals of giving Rayden a sponge bath and sitting up in the chair. (He is able to SIT because most of the pressure is on his bottom, but not LAY on his back.) 

He sat there in his 'marshmallow' chair for about an hour eating his entire cheeseburger. The nurse came in at 1pm with his dose of Tylenol. He took one tiny sip and threw up his entire lunch!! When cleaning him up we noticed the pillows he was sitting on and the one on his back were soaked with drainage from his wound. The nurse got very upset and called the doctors. AGAIN, we are watching it to see if it slows down. They decided to stop the Tylenol in fear that the vomiting may just be a gagging reflex, although I'm not so sure about that because he takes seizure medicine at home every day without throwing up. Infectious disease decided it was safe to stop the IV Vancomycin, which was the last resort medication that he had an allergic reaction to. They are actually going to change to IV Rocephin. So now he has dropped Tylenol, Benedryl, Vancomycin and turned down his fluids. He is still on three IV antibiotics; Rocephin, Ceftazidime and Flagyl. He is also on IV Toradol (anti-inflammatory), his seizure medicine, and can have Valium, Oxy, and Morphine if needed. Luckily he has the PICC line that all these medications can go into so he won't get poked over and over and we won't have to worry about blowing the IV. 

This afternoon Rayden felt well enough to move into a wheelchair. We made laps in the hall a few times and made our scheduled appointment in the playroom. The science school brought him a bird house to paint and a dinosaur egg to 'dig'. We are super happy that Rayden is feeling well enough to sit up, eat, and do activities. 

We have had some really good nurses on 7th floor. Last week a nurse named Alissa took care of him. They really hit it off and he is now calling her his 'best nurse' and wants her to come to his school. He even bought her some chicken wings today for dinner. When her shift was over she came to tell Rayden goodbye and he broke down crying uncontrollably. So precious how he makes strong connections with people. 

January 30, 2021 (Day 16 in the hospital)  Rayden slept so much better last night since the nurses didn't have to wake him up every hour. His incision is still draining bloody fluid when he is lying down but not as bad as yesterday when he sat in the chair. 

*The plastic surgeons still do not want him laying flat on his back but sitting upright is ok. They are still concerned about the dark spot in the center of his incision. They change his dressing every morning around 6am but the nurses have to change it again several times throughout the day. First, they put Bacitracin creme directly onto the incision. Next, they cover it with a yellow Xeroform Petrolatum Dressing. Then, they place a layer of 2X4 gauze. Lastly, they tape down a long, thick, soft dressing. (Yes, it bleeds through ALL of that!)

*The neurosurgeons are still watching the drainage but are happy with the incision closure and the fact that he can move his legs and stretch on his own some today. 

*The floor doctors took him off all IV medication. They are switching him to two oral antibiotics; Omnicef and Flagyl. They say if he can hold down the oral antibiotics we could be going home soon. They did not remove his IV or PICC line of course, just turned them off. 

*The infectious disease team is happy with his progress but still want to follow him AFTER discharge. They assured me he would remain on oral antibiotics for a while when going home. They completed a C-reactive protein (CRP) test on his blood yesterday. CRP levels in the blood increase when there is a condition causing inflammation somewhere in the body. We all know he had two major surgeries in two weeks so that alone is a source of major inflammation. But high levels can also be caused by infection, of which we know he had as well. CRP levels are suppose to be less than 10. Rayden's levels are 156!!!! That's incredibly high! In mild inflammation and viral infection, CRP increases to 10–50 mg/l. However, in active inflammation and bacterial infection, CRP concentration is between 50 and 200 mg/l. High concentrations are seen in severe infections. They want to do another test tomorrow. If the numbers have gone down they are fine with him going home Monday, but if they have not, he needs to remain in the hospital. 

Rayden has had so many people praying for him, calling, texting, emailing, messaging, etc. I hope he knows how much he is loved, I sure do. He has had some wonderful little phone calls and video messages from special, little friends (Nathan, Bryce), although he hasn't really felt up to talking to anyone until today. He enjoyed a sweet face time conversation with his best friend, Harrison, this morning. It did my heart good to see him actually talking, smiling, and trying to be silly again. Harrison tried so hard to cheer Rayden up by showing him cool toys and making silly faces. It's priceless to hear how these sweet, little children genuinely care so much for Rayden that they are asking their parents about him constantly and praying for him daily. Most precious little friendships. 

We met our goals again today. (Sponge bath, sitting up in the chair, and walking a little) The nurse took the IV out of his foot so Rayden could put his AFOs and shoes on. Rayden walked from the bed to the door. We made our scheduled appointment in the playroom. He stood up playing air hockey for about ten minutes. His legs are so weak and he began getting cramps again. The valium is really the only thing that calms his muscle spasm pain. 

 

After recharging with a power nap and some pizza, Rayden was ready to walk again. He was weak but was full of excitement and loud laughter. When he walked into the hallway he made that high pitched squeal he likes to do when he's excited and proud of himself. Nurses and doctors came running thinking something was wrong. When they saw it was Rayden walking all their eyes lit up with huge smiles. PRICELESS!!! Dr. Steven Papas just happened to be on the floor, even though it was past time for him to leave for the day. He took the time to join right in the fun, motivating Rayden by allowing him to run him over again. We are beyond pleased with Rayden's progress today and give God all the Glory. We are also very thankful for the wonderful care he has received on the 7th floor. Rayden walked all the way down the hall, took a break, and walked all the way back! 

January 31, 2021 (Day 17 in the hospital)  Rayden awoke with no appetite at all. He would not eat one single bite for breakfast but did drink some gatorade. I finally got him to eat a Pop Tart out of the goodie bag Harrison sent him. (Anything is better than nothing) He only ate a bag of chips and a container of applesauce for lunch. But finally ate almost an entire cheeseburger around 9pm. The last IV wouldn't flush this morning so the nurse had to remove it. He only has the PICC line left. The oral medication gags him pretty badly but he is keeping most of it down. (He only throws up about every other dose.) The nurse called Child Life to see if they had any tricks. At his 6pm dose we mixed it in a grape powder packet with a little grape juice for him to sip through a straw. It's not medicine, it's a drink! NOPE!! That was worse. We ended up sucking it up into a syringe and squirting it in his mouth anyway. After gagging and throwing up some, he told me I was in trouble. I had to go to the principals office on a Saturday and stay all day!! 

*Plastic surgeons came this morning and are still concerned about the one dark spot that is oozing serosanguinous fluid. They said there really isn't anything to do about it but cross our fingers and hope it begins to heal. Hmm, that's reassuring!! They even mentioned all the bruising and swelling he has around the incision. They wanted to make sure I knew how to change the dressing because they see no need for us to stay here waiting for it to heal. I'm just so afraid that it will open back up again, understandably so. He can sit up on his bottom but still cannot lay on his back. He is still complaining about his left leg hurting. 

*Infectious Disease is still waiting for a new CRP test before they will sign off on him going home. I suppose they will be doing that tomorrow. Of course, he also has to be able to take the antibiotics by mouth!!

*The floor doctors believe, if everyone is in agreement, we should be able to go home tomorrow. 

We were able to meet our goals again today. This boy is on a roll! He got a sponge bath, sat in the chair a long time, walked down the hall and back two times and even made it for our scheduled playroom time. In the playroom he stood up for two games of air hockey. Rayden is recovering well, but still has a long way to go. He gets so tired from just doing those things in the morning that he sleeps most of the afternoon.