March 23, 2021 "Cheering for Rayden day"

Here again, I am at a loss for words. This week Midway Elementary School has been celebrating Spirit week. Today was "Cheering for Rayden day." An ENTIRE school was wearing yellow, or super hero shirts to send well wishes to Rayden. I can't believe they dedicated a whole
day during spirit week to support Rayden. This morning we had a video chat with the entire school. I cannot believe the outpouring of support. I'm so thankful to be a part of this great school family. The students were so excited to tell Rayden to get well soon and how much they missed him. Rayden and I told them a little about the hospital and showed them his badge and his dog, Pootles. We told them about the tooth fairy coming to see Rayden in the operating room as well. I wish I could post pictures of all the supporters but of course I don't have permission to do that. Here are a few. 

March 20, 2021 "Home Sweet Home!"

 March 20, 2021 (Day 65 in the hospital)--GOING HOME!!!!!!

Rayden slept pretty good last night but was up early this morning ready to go home. I slept like a kid on Christmas Eve, waking every hour to check to clock. We woke to find notes for Rayden taped to our door from some of the nurses and CNA's. They wrote him goodbye letters and well wishes. I can't thank them enough for taking care of Rayden during this time, but that was their jobs. Falling in love with him was voluntary and above and beyond the call of duty. 

Rayden wanted to write notes to each and every nurse and CNA. Well, that would take a while, and I don't want to miss anyone. So we decided to make one big poster. I wrote the words and Rayden and Roxana placed the stickers. He was so proud of it and wanted to hang it at the front office. He marched down the hall and taped it on the medication door for everyone to see. 

The hospital provided all Rayden's wet-to-dry dressing supplies. They brought in a huge box filled with tape, ABD bandages, gauze, even saline water. 

We finally left the hospital at 1:30. (Nanny and Papa come to pick us up because Michael was on call this weekend.) Several of the nurses and CNA's came to the elevator to send us off and there was not a dry eye! It's crazy how excited we were to leave, but we were all crying at the same time. 

As soon as we got into the van Rayden threw his arms in the air and started singing, "Yeah, we are going home!" I do believe his smile was the absolute biggest I have ever seen. 

I guess I have a little PTSD because of the horrific ride home after Rayden's back surgery. When we got home that night his incision had opened up so I have been afraid to put him back in the carseat again. I would rather his back completely heal before he rubs it raw in the carseat, so I strapped him in the seat and placed pillows all around him again.  

The ride home was kind of weird because when we went into the hospital it was still winter. The trees were all bare and there were no flowers or grass to be seen. But today is the first day of Spring. I don't really know the names of the trees, but there were beautiful white, yellow and purple trees in full bloom and we even saw some daffodils. Everything seemed new. 

When we arrived home Uncle G was here with Michael ready to take pictures. There were yellow ribbons tied to the front and back porch thanks to Deniece Elmore. Rayden was so thrilled to be home. He wanted to go look at everything just to make sure it was like he remembered. We were welcomed with a few more surprises when we came inside. Uncle G brought us a delicious treat from the bakery and there were balloons and a monetary gift from Dawn Wilkes, as well as monetary gifts from MES, LCC, and Moore & Alphin PLLC. There were tons of cards and also presents from Dale Hildebrand and Anne Turlington. I cannot thank everyone enough for thinking about us and making Rayden smile over and over during this time. You have no idea what this means to our family. Your love and continued support throughout this ENTIRE time have been unbelievable. We could not have made it through this ordeal without each and every single one of you thinking of us and praying us through it. 

We were only home for 30 minutes when we heard this loud music coming from down the road. We went out the front door only to find the Dunn Sudan Clowns coming down the street in their bus. They parked right in front of our house and 7 clowns came barreling out dancing a Welcome Home show for Rayden. I cannot even put into words the excitement Rayden had to see 'his clowns' at his house! He sat in my lap on the front porch for only one song, then he had to get in the middle of them and dance as well. He continuously said, "I can't believe this!" People from the neighborhood started coming out of their houses and down the street to watch the show. I wish we could have had the entire yard full of people to welcome Rayden home, but Covid has messed everything up. 

Rayden continued to dance for a while holding Mommy and Daddy's hands but soon decided he needed to go hug each and every single clown. He's the most loving little fellow. After about 20 minutes they took pictures with him and loaded the bus. It was THE BEST welcome home I could have ever imagined for him. I can't believe these men took so much time out of their Saturday to get all 'clowned' up and come all the way to our house for Rayden. It just speaks of their love for children and their ginormous hearts!! Rayden loved it so much that as soon as he came into the house he HAD to put on his clown costume. He talked about them all night and the next day! (YOU MUST WATCH THE TWO VIDEOS!)

Clowns in front of the house are as follows: Bottom row from left: Dylan Honeycutt-Klutz, Brian Honeycutt-Boo, Rayden, Lee Honeycutt-Ho-Lee-Wood. 

Top row from left: Justin Langdon-BonZo, Cody Dunn-Yammy, Tyler Carpenter-Tugboat, and TJ Johnson-Tank. 

March 19, 2021 "Wound vac change #14"

March 19, 2021 (Day 64 in the hospital)

-14th wound vac change

Rayden and I enjoyed completing some sand art projects this morning after our school work. He has the sweetest heart. He gave me the dinosaur necklace and he kept the dolphin necklace. Monica, from the playroom, even let him go back into the music room today after lunch. 

We waited all morning for Dr. Eedie to come change his wound vac. Around 2:00 a male doctor from the plastics team came. Rayden looked up and asked, "Who are you?" and "Where is Dr. Eedie?" He was comfortable with her. I knew after he asked those questions that this would not be a smooth change. He immediately started crying. He was perfectly still for the doctor to remove it, but he was very upset. The doctor took pictures and sent them to Dr. Damitz, who in turn replied that we no longer need the wound vac. NO MORE WOUND VAC!!!! He switched everything to the wet-to-dry dressing and reminded me that they would be doing that twice a day now. 

It wasn't long that the floor doctors came running in excited to share the news that we could go home. They are trying to get all the supplies, instructions, and follow up appointments set for Rayden's discharge tomorrow. 

Rayden was so excited to finally be free from the wound vac that he began running down the hall. I didn't have the "leash" to slow him down! He also dropped the walker and started marching down the hall like a boss! 

March 17-18, 2021 "Wound vac change # 13"

March 17, 2021 (Day 62 in the hospital)-

13th wound vac change

St. Patrick's Day

We sure have had a fun day today. Rayden opened the "St. Patrick's Day party in a bag" from Abby Barefoot first thing this morning. His nurse and surgeon were in here to help him enjoy the contents. It seemed like there was no bottom to the bag. Fun and exciting things just kept coming! Once we got cleaned up for the day and ate breakfast, he put on his green gear and started walking the halls. He shot the water gun at everyone he saw that didn't have on green. Doctors, surgeons, nurses, CNA's, cleaning staff,...everyone! He even got Dr. Elton and Dr. Damitz. The best part is no-one got upset. (I wouldn't let him soak anyone.) Everyone just started laughing hysterically. Honestly, he had the only St. Patrick's Day spirit on the hall. 

Today's wound vac change went super smooth. The surgeon used the spray early allowing it to sit and work while she got all the materials ready. That must have made a big difference because he didn't even cry one bit while she was removing the tape. There is literally just a sliver of the AlloDerm left. Dr. Damitz says IF the wound continues to make this much progress by Friday then she MAY remove the vac and switch to wet-to-dry dressings. They would try to line everything up with a home health agency to supply the materials at home because the wet-to-dry dressings would need to be changed twice a day. Whenever I feel comfortable with the dressing chances then she would release us. She stated the obvious...Rayden cannot return to school any time soon. I hate that, because he misses his friends and teachers. Not to mention how much education he is missing. 

March 18, 2021 (Day 63 in the hospital)

Gina gave Rayden a new student nurse to train today. Her name was Leah. He gave her, and the other student nurses, the grand tour. (He's getting very good at that!) Leah attended his hospital school session with him as they began excavating a dinosaur from an egg. She also went to the playroom with us for a little while. He enjoyed having her play with him. The playroom lady finally agreed to let Rayden go into the music room today. He has been asking religiously. He enjoyed playing with the instruments and making his own music. 

On the way back to the room we ran into the floor doctors. They assessed him right there in the hallway and began playing tag with him. I mean there were five doctors running around in circles playing tag! It was so funny! Rayden soon found Roxana, his favorite CNA. They are always trying to scare each other in the hall and laughter fills the place when she's here. He has been waiting for her to come to work today so he could do a bubble shark attack on her. Just when she leaned in thinking the shark toy was so cute, he pressed the button and bubbles flew everywhere! She, and all the nurses, busted out laughing. If laughter is the best medicine, then I guess Rayden is a great prescription!! 

After lunch, Rayden wanted to finish his dinosaur excavation. Meghan, his nurse, sat down beside him to help discover what was inside the egg. They both had to put on their safety goggles because dirt was flying everywhere! He even did an experiment with the water color changing tablets. He wanted to put that red water in his water gun and shoot people with it. I told him that may stain their clothes. We placed a white wash cloth into the red water so he could see what it would do to people's clothes. His eyes were filled with amazement when the washcloth turned pink. I just allowed him to stand in the bathroom and shoot the shower walls. He had a blast! 

Elizabeth from Child Life, had been collecting Rayden's Beads of Courage this morning. This program gives beads to children for each hard, medical experience they go through. Every time he has shown an act of courage there is a different bead to receive. There are beads for surgeries, MRI's, IV's, hospital stays, castings, procedures, etc. Rayden has been through so much already so we had quite a bit of catching up to do. Rayden, Leah, and myself strung beads for three hours! (His occupational therapist would be proud.) But when we were done I was amazed to see an actual tangible symbol of his acts of courage. 

We had to get into the hall this evening for an hour because there was a Tornado warning. Rayden and I walked up to the front sitting area so we didn't have to sit on the floor or drag a heavy chair out into the hall. Rayden was scared at first, but soon began talking to all the nurses and forgot why we were even in the hallway. We are on the very top floor so it kind of made me a little uneasy too. Thank you Lord for keeping us all safe tonight. 

March 15-16, 2021 "Wound vac change #12"

March 15, 2021 (Day 60 in the hospital)-12th wound vac change

Rayden's wound vac has been alarming on and off since Saturday morning. It says blockage alert but we can't find a blockage. If Rayden moves a certain way it will stop beeping but there is obviously something wrong with it. The nurses paged the Plastic Surgery team but they didn't respond, so they changed the canister Sunday morning and it stopped for a couple of hours but went right back. It started going off this morning about 1am!!!! It continued throughout the rest of the night so Rayden nor I got good sleep. 

I ordered a special spray adhesive remover to help the surgeon take the wound vac tape off easier and faster. It's called SENSI-CARE Sting-Free Adhesive Releaser Spray. The nurses borrowed it from a parent on the 5th floor last week and it works amazingly. You just spray it around the edges of the tape and it starts rolling up itself. You would think the hospital would have this spray themselves but they don't!! I had to order it on Amazon. It was only 1.7oz and cost $24.09! The hospital has this product only in a little cotton swab form, so they have to pull the tape and try to rub under it as they go along. It's a long agonizing process. 

The plastic surgeon came around 10am to do his dressing change. The Adhesive Releaser did an amazing job of helping the tape roll off instead of so much pulling, but it still hurt and made Rayden cry before it was all over. The surgeon said the same old thing...it's getting better. The walls are really caving in on the giant, triangular shaped AlloDerm. The only thing we can see of it now is a slender, rectangular shaped piece. The yellow fibrous tissue that was around the inside of the wound is almost all gone as well. She believes it was clogging up the sponge making the machine think there was a blockage. 

When we left the room this morning, Rayden went straight to Monica to tell her his badge was so heavy it was pulling his clothes down. She fixed that problem by giving him a lanyard. He quickly hugged her neck and began showing it off to all the staff. Gina was afraid Rayden would like Monica more, so she fixed that by giving him an entire bag of Sour Patch Kids candy. This kid is getting spoiled by the minute. 

He did the best he's ever done with Mrs. Bergman, the hospital teacher, today. He was so engaged and paying attention so well that when it was over he actually said, "No, I wasn't done!" This NEVER comes out of his mouth about school! I was so proud of him. Of course Andrew, the science guy, brought Rayden a new activity today. It was another dinosaur dig with a few dinosaur friends to go along with it. 

Rayden met a new little friend on the floor today. He's only 3 years old. They immediately started racing down the hall. He REALLY needs to play with his friends again. I feel like he's been in prison away from EVERYONE he knows and loves. It's just terrible. I try so hard to fill his days with fun and laughter as much as I can, but it's not the same as living your life. 

March 16, 2021 (Day 61 in the hospital)

Rayden and I have this routine thing down pat. Sometimes we switch it up but mostly it's the same old thing. He and I both do best with a set routine. Today we added 'gymnastics' to the mix. It's actually PT, but since they use the mat he calls it gymnastics. Elizabeth, from child life, brought me a form to fill out about a program called Beads of Courage. It's a program that gives beads to children as a tangible symbol of their experiences. Every time he has shown an act of courage there is a different bead to receive. There are beads for surgeries, MRI's, IV's, hospital stays, castings, procedures, etc. She realized we were far behind in this program because he has shown SO many acts of courage throughout his short life already, but we are going to try to get it as close as possible to the past and just build from now on. Luckily, I have my blog to use as reference. 

We received a surprise blessing today when Abby Barefoot texted me saying she was bringing us dinner. She also brought gifts to Rayden and I both. He cannot open his until tomorrow because she said it was a "St. Patrick's Day party in a bag!" He's so excited. She prayed with us right there on the sidewalk. We also got a special monetary gift from my Uncle Don and Aunt Kathy Abernathy today. Lord, you always send us just what we need. 

March 13-14, 2021 "Making the best of the weekend"

March 13-14, 2021 

(Days 58-59 in the hospital)

Rayden sure has been a happy boy to have his Daddy back. Michael brought all the cards, poster and gifts from Lee's Chapel Church youth and First Presbyterian Church youth. We had a great time reading all the cards and decorating the walls with them. Michael also brought a tub of learning activities from one of Rayden's teachers, Mrs. Raines. He really enjoyed the change of pace to our 'school' for the day. Yes, we even do a little school on the weekends because Rayden has so much catching up to do. We only get a little done each day but that's better than nothing at all. 

We took Rayden to the cafeteria for lunch Saturday. It's like a ghost town on the weekends. He enjoyed some chicken wings (we can't order them on the menu). 

We were also able to take him to the arcade room because his playroom time overlapped with another girl. He's never been able to go in there before because it's designated for teens. He played all the big games for about 15 minutes and then asked if we could go outside on the terrace again. It was a beautiful day so the playroom attendee agreed. He had so much fun pretend playing with Mom AND Dad on the pirate ship. I wish he had a little friend to play with, not only because he tires me out (I'm not as young as I used to be, haha.), but because he misses playing with other kids. He was able to play some this past week with a little boy but he left today. Rayden didn't understand why that little boy got to go home but we can't. 

We enjoyed an outside visit with Nanny and Papa in the Courtyard on Sunday. It was such a beautiful day. Rayden was perfectly content all weekend with his Daddy here, but when he had to leave Sunday afternoon he fell apart right in the hallway. I just hugged him and let him cry it out. I hate to see his little heart broken like that but Daddy had to go back to work! I pray we don't have to stay here much longer. 

March 11-12, 2021 "Wound vac change #11"

March 11, 2021 (Day 56 in the hospital)

Rayden has worn me out today! He made some sweet little friends. There's a little 5 year old boy and a little girl. The boy was riding a tricycle, the girl on a car shaped wagon and Rayden with his walker. They were all racing down the hall the entire unit. The laughter just filled the air and people came out of their rooms to watch. The children started waving like they were in a parade. Rayden kept up with them but got tired about the 5th lap. Then he got into a wagon and the racing and yelling resumed! This would have continued all day but the parents got tired long before the kids, haha! 

We were not able to go to the terrace today but I did take Rayden to the courtyard for some sunshine. I got smart and pulled him AND his wound vac in the wagon this time. It was much easier than pushing the wheelchair and the wound vac separately. 

Monica brought Rayden a new Batman balloon and Andrew, the science guy, brought him a Wonder Connection shirt. 

March 12, 2021 (Day 57 in the hospital)-11th wound vac change

Another wound vac change in the books. Rayden's skin was very sensitive to the tape this morning so it hurt pretty badly when they were removing it. As soon as it was all off he was back to his playful self. You can see a significant improvement in the wound today. The white AlloDerm is actually looking pink from all the tissue taking over. We are almost there! 

We met with Mrs. Bergman, Rayden's hospital teacher this morning soon after the wound vac change. She is so creative and does a great job keeping his attention over a computer screen. He is beginning to enjoy his time with her. His science activity today was searching for sharks teeth in a bowl of sand and examining them with a magnifying glass. She used that activity to have him sort, count, and describe the teeth, etc. She asked him numerous thinking questions like, "Why do you think some teeth are black and others are white?" or "How many teeth do you think a shark has?" He was so engaged and loved it. 

We went outside on the terrace for our playtime today. Rayden and I enjoyed the sunshine, cool breeze and watching the helicopter land again. We also took a wagon ride out to the courtyard for another picnic lunch. We are trying to make the best out of our situation. I just keep reminding myself that this is one-on-one quality time that we will never get back. One day he will be grown, like his brothers, and will not have time to just sit outside and talk or have a picnic with momma. 

Rayden had a wonderful face time visit with friends from school today as well. He showed them all how his dog, Pootles, works. They sure thought that was funny. He also showed them his UNC badge and all the things attached to it. I showed them around our room. When they saw our view out the window one of the kids said, "You're in the big city!" I hate that Rayden has missed so much time with his friends and school that he can't get back. 

 

March 9-10, 2021 "Wound vac change #10"

March 9, 2021 (Day 54 in the hospital)

Rayden and I went outside today for a picnic in the courtyard. It is suppose to be beautiful all week so I guess we will add this to our daily routine. 

The floor doctors are still trying to get Dr. Damitz, plastic surgeon, to release us somehow. The rented wound vac and box of supplies arrived to our room today. They asked how I felt about going home and driving back 3 times a week or at least going to stay at the Ronald McDonald House. I honestly don't care if I stay here an entire year, as long as it's the best thing for Rayden!! I trust Dr. Damitz, and will do whatever she recommends whether the floor doctors like it or not! If I go home and this thing opens back up, I will absolutely lose my mind! 

It's amazing how God works through people to remind me that He is still here walking through this fire with us. We feel so many praying for us daily and we are constantly receiving text messages of inspiration but God knows how anxious I felt when Michael had to go back to work. He worked through Carol Raines to send me a daily devotional and a book entitled "Worry less, Pray more" yesterday. He also worked through Deneice Elmore today when she sent me a song entitled "Fires" by Jordan St. Cyr. It's the little things that speak so loudly if you just allow yourself to listen. 

March 10, 2021 (Day 55 in the hospital)- 

10th wound vac change

Rayden's wound vac change went very well this morning. He has now mastered the steps to changing the vac just like he did the PICC line. He was actually telling the surgeon what steps to take and what to do next! Of course, she loved it because that just proved that he was comfortable and unafraid. The wound's progress is so slow and minimal that it is almost not even noticeable. I just have to keep reminding myself that it is getting better each time. Dr. Damitz said she was getting push back from the floor doctors that she needed to find a solution for us to leave the hospital. She reminded them of his complex history and the many obstacles he had to overcome just to get to this point. She said she refuses to allow him to regress. He can't go home because there isn't a home health agency that will come to our house for wound vac changes or complications that may arise. He can't go to the RMH or home to come back and forth because she doesn't do clinic appointments but once a week and he needs his change three times a week. It's best for him to stay inpatient because the surgeons are here every single day. She predicted it taking another week or two to completely cover the AlloDerm so we can transition to wet-to-dry dressing changes. 

Rayden and I have had a very busy day. After his sponge bath and wound vac change we washed clothes. Now that may not seem like anything worth talking about, but it's actually a huge event. We have to take a trip down to the 2nd floor and down a very, very long hallway three different times just to get them completed. 

He also met with his hospital teacher and physical therapist. During PT he had to sit and balance himself on a bouncy ball while building a marble rollercoaster. He had to stand up from the bouncy ball using his core muscles, without pulling on the table. That was tough. While standing, he wasn't able to lean on the table with his belly which is what he normally does to balance himself. He had to bend down to the floor to pick up pieces and stand back up without pulling on things. These little things we take for granted and may not seem like much, but they are rather challenging for Rayden. 

We had a scheduled appointment in the play room and enjoyed lunch out on the butterfly terrace, which is on the rooftop. What a magnificent view! We had the entire place to ourselves. It was so good to see Rayden play on the pirate ship and use his imagination as he pretended to be a pirate, a captain, and a fisherman. We actually saw the helicopter take off while we were eating our lunch and land while we were playing. That just made Rayden's day! 

We haven't made a Rayden fundraiser shirt in 6 years. Here's your chance to get a new one and help us out at the same time. Please order yours today because the campaign will close in 2 weeks. Thank you all for your continued support. I can't wait to see pictures of you in the shirt. 

T-Shirt Fundraiser click here

March 6-8, 2021 "Wound vac changes #8 and #9"

March 6, 2021 (Day 51 in the hospital)-8th wound vac change

We decided to do a bowel clean out today since weekends are normally very laid back. The bandage is sealed all the way around the wound but we placed a mud flap as well just to be safe. Even though we had all these precautions in place, poop seemed to make it's way UNDER the sealed bandage! Long story short, the plastic surgeon came to change the dressing. They couldn't sedate him because he has been eating today. They recommended Ativan to calm him, but after his reaction last time, Michael and I decided not to give him any because we felt like he would be more responsive without it. The surgeon and the nurse were on his back side, Michael and I on his front, and two child life ladies at his feet. I suppose they thought we would need to hold him down, but we did not! He rolled right over and gave them perfect view of his back. Yes, he cried while she was taking the tape off, but he did not move a muscle. I honestly don't think it hurt him, he was just more scared than anything. Everyone was amazed at how well he handled it and couldn't believe how he actually laid perfectly still. The surgeon said we may try to do his vac change at bedside again Monday. If he handles it this well again without sedation, they may send us home earlier than expected. 

The child life ladies decided Rayden needed a special prize for how brave he was. They came back with a beautiful, stuffed dog that has a remote control. Each time you press the button on the remote, the dog lets out a different 'tooting' sound. Oh, how that made Rayden laugh!! He just laughed and laughed. He couldn't wait to walk the halls and press the button around each person he saw. He named him "POOTles". Yes, he came up with that all by himself! The animal came from a foundation called Andrews Laughing Gas. Andrew fought leukemia and his farting unicorn gave him joy so his family now sends these animals to hospitals in hopes to "make warriors laugh one toot at a time." It certainly did that for our Rayden today. 

March 7, 2021 (Day 52 in the hospital)

This morning the plastic surgeon intern said they were going to try to do tomorrow's wound vac change in the room just like we did yesterday. If he does well again, then they would discuss going home for the remainder of the vac changes. If he can't tolerate it, we still have the sedation set for 2pm. The major deciding factor remains...will Dr. Damitz feel comfortable releasing him to home health after all that happened and how delicate his skin is?!?

We noticed a large bubble underneath Rayden's skin on the left side of the top of his incision. The floor doctor said it could be blood or fluid collecting but he thought the wound vac should've taken care of that. He is going to contact the plastic surgeon to see what they have to say. It's not red or fevered, and doesn't bother Rayden. We are definitely keeping an eye on it though. 

Michael left around 3pm because he is officially out of vacation and sick leave for the entire year. I'm not sure how it's going to go because Rayden is one of those kids that NEED both his parents to feel safe and comfortable. I am relying on the fact that he is comfortable up here now and knows so many people that we can keep him occupied. 

March 8, 2021 (Day 53 in the hospital)-

9th wound vac change

I was amazed at how well Rayden handled the wound vac change this morning. He DID NOT even cry! The nurse, surgeon, and myself were the only people in here. This boy is definitely a WARRIOR!!! One of the nurses put Bacitracin cream all over the tape about 5 minutes prior to the surgeon coming in. She said it would help peel the tape off. It seemed to work, but it left a greasy film and didn't allow the new tape to seal properly but we are hoping it will hold up until it needs to be changed Wednesday. Looking at the picture today, it doesn't seem to be any different to me. As a matter of fact, the two red spots we saw ON the AlloDerm last week are actually NOT there anymore. The intern said this kind of wound would take months to heal!! She also thought the bubble we saw under the skin yesterday is actually just a muscle in his back. It seems that one side of his back is stronger than the other so it looks different to us with the bigger scar.

Since Rayden proved how strong he was, they started the ball rolling for us to be discharged. There are a lot of things that have to be in place before we can leave. 1-Take the PICC line out, 2-get a rented wound vac, 3-get a forward walker with wheels, 4-find a home health agency to do wound vac changes, 5-talk to Dr. Damitz about all of this. 

Around 2pm the nurse mentioned she needed to take out the PICC line. We were eating lunch so she told Rayden she would come back but gave him permission to start pulling the tape off. Well, that's all she needed to say. Before she could get out the door he had already pulled it half way off. She told him to hold on until she got back with the bandage. She returned with a cleaning solution, gauze and bandage. I have never seen a PICC line being removed before. It was just like an IV but 30.5cm long! It just kept coming and coming. This frightened Rayden and he cried a little. The nurse held pressure and placed a bandage that needs to stay in place for 48 hours. 

Around 3pm Dr. Damitz came to discuss the situation. Although she was very pleased with Rayden's ability to do bedside wound vac changes and not need sedation, she will not release him until the granulated tissue has covered the entire AlloDerm. Due to his complex history, she is hesitant to give up control of the situation. The case manager came while Dr. Damitz was in here and reported that she has spent all day trying to coordinate with home health to see if anyone would do pediatrics in our area. She called 6 agencies with no luck. This just reaffirmed Dr. Damitz decision to keep Rayden here. The intern even mentioned letting us go home but come back twice a week for vac changes here, but Dr. Damitz wants to stick to three times a week. She said we have made so many gains that we cannot risk it getting damaged now. I understand, but...WE WANT TO GO HOME!!!! I wish they would quit getting our hopes up just to shoot them back down!

Although Rayden asks me every 10 minutes when his Daddy will be back, he has actually been content today. We kept the same routine of sponge bathing, breakfast, walking, hospital teacher, school work, play room, lunch, more walking, science experiment, and working at the front desk. 

March 4-5, 2021 "Wound vac change #7"

March 4, 2021 (Day 49 in the hospital)

Rayden got a promotion at his UNC job! He is now training nurses. Gina, the charge nurse, told us that she had some student nurses coming today and tomorrow. She asked Rayden if he would train them and show them around. She was very serious! She wanted to give them a patient that could talk to them (most of these patients are babies). He took on this new job with a smile. When he saw the new nurses in the hall this morning he went straight to work. This boy was serious about his new commitment. He introduced himself and told them he was in charge, haha. He went straight to showing them around the floor. He introduced them to everyone, told them what was behind every door, and where everything was located. He eventually got only one assignment named Angel. 

She stayed with him all day. She went to the playroom with him and helped him build a house with hardwood floors. He told her to be his 'Kevin Tyndall". I had to explain that Kevin was our contractor, and when Rayden builds houses he pretends that someone is him. She played along. He allowed her to take his vitals all day, put Heparin in his PICC line, attend his meeting with his hospital teacher, and even join us outside for our sun break. She ended up giving him her foldable clip board when she left because he wanted to write on it all day. 

Rayden's favorite nurse, Alissa, brought him a gift this morning. She has not been here in a week and he was just so tickled to see her. She brought him a white basket filled with great items just for him. This afternoon the helicopter crew gave him a pin for his shirt and told him he was a member of the "flight crew!" He's making such great friends and getting so spoiled up here, he's probably never going to want to leave! 

Even though I told the doctors Rayden has missed over 6 weeks of school, PT, OT, and Speech, I was informed that they didn't have the resources to provide him with his therapy. That's just great! I am working with him as best I can, but it's just not fair that he is missing out on much needed therapy and is regressing! They recommended doing tele-visits with his therapists. That's what we are doing with school and it's just not the same as hands on. 

March 5, 2021 (Day 50 in the hospital)-

7th wound vac change

The day started with the nurse hooking Rayden back up to IV fluids because his procedure wasn't scheduled until 2pm. They didn't want him to get dehydrated or be complaining because he was so hungry. He didn't seem to mind because she explained why he needed the fluids. After his sponge bath he had to get to work. He had a new student nurse to train today. Her name was Cindy. He took her on a tour and allowed her to take vitals. He wasn't as excited about it today because he had the helicopter crew on his mind. He told every person he met that he was looking for the helicopter crew because they gave him a lapel pin last night and told him he could work with them. Monica and charge nurse, Gina, told him they never got his resignation letter and they were not approving his transfer, haha. They are so comical.  They want to keep him working here! Luckily the helicopter crew never came to our floor and he gave up. He met with his hospital teacher, completed some of his school work, and started an ocean discoveries experiment. 

They finally came for his 7th wound vac change at 3pm. The student nurse went with us. She was able to stay for the entire procedure and was amazed at how smoothly it went. The nurse in the procedure room got wind of how Rayden enjoyed the water gun on Wednesday so she started with that. He shot the water across the room and wet the doctor! Everyone was laughing so I suppose it was fine. She had him drawing the water up into the syringe a couple times and squirting it at people. Then he noticed the syringe with the white propofol in it. She told him it was 'magic milk'. He wanted to squirt that as well. She allowed him to twist it onto his PICC line and actually dispense it to the number 6. Then she allowed him to twist on the flush and begin pushing it. She told him to count each number as he pushed in the flush. He said "one" and drifted off to sleep. I am so very thankful that they have engaged him in this experience so he isn't afraid anymore. 

The wound looks much better today. (My pictures aren't the best because I take a picture of the computer screen.) There is actually a noticeable circle on the AlloDerm where the red, granulated tissue is growing through. The tissue is also closing in around the outline. It shouldn't be much longer that the tissue has taken over and we will not be able to see the AlloDerm anymore, which is the goal. 

March 3, 2021 "Wound vac change #6"

March 3, 2021 (Day 48 in the hospital)-6th wound vac change

While everyone was getting prepared for sedation and the wound vac change one of the nurses told Rayden the flush was actually a water gun. She wet him with it and then allowed him to wet her over and over in different places until the anesthesiologist pushed in the propofol. He didn't even realize what was happening. He coughed one time and said, "Mommy", but then quickly shut his eyes as we lowered his head down. He never even had a chance to get scared this time. I was very, very pleased. 

Dr. Damitz said the wound looks the best yet. It is finally growing tissue underneath the AlloDerm. The tissue is actually trying to grow up THROUGH the AlloDerm, making it look translucent. She stated that the wound is the size of a half dollar (so bigger than a quarter which is what the nurse told me Monday), and it is rather deep as well. The goal is to have the red, beefy tissue cover the entire bottom of that half dollar sized wound so you cannot see the AlloDerm anymore. She added another entire week of wound vac changes to our stay. Once it is all pink she will send us home with wet-to-dry dressing changes. Of course the depth of the wound will take months to heal and she expects that he may have a little depression when it finally fills in. 

They did not give Rayden Ativan before his procedure this time. When he woke up, he sat right straight up in the bed. He was happy and ready to eat. I like that much better. We came back to the room and ordered some Hibachi (he loves the shrimp and sweet carrots). He ate well, completed several sheets of his school work, and worked with his hospital teacher, Mrs. Bergman. We even went outside to soak up the sun for over an hour. It was such a beautiful day to take in some rays. Rayden took a very long walk around the courtyard. Then he sat in the sun, covered his eyes with his mask and sang, "I'm takin' me a sun nap. Takin' me a sun nap. Sittin' in the sun, soakin' up the sun. I'm takin' me a sun nap!" This kid is just so precious!