February 18-23, 2021 "Wound Vac changes #1 and #2"

February 18, 2021 (Day 35 in the hospital) 

Rayden has been very tired today. We took him to the play room but he didn't stay his entire time because he got tired. We even went to his job but he only stayed a few minutes before he started complaining about his legs hurting and how tired he was. He actually fell asleep during his meeting with the hospital teacher. The only thing we got him to do today was paint a stain glassed window frog. 

He cannot eat after midnight because he has to be sedated tomorrow afternoon for his first vac (Vacuum-assisted closure) dressing change. I found out today that he will go to the same place he goes for pre-op first then another place nearby, not the OR. The problem is he will not understand that. He's going to think he's going back into surgery. I hope we can keep him calm and make him understand. 

Rayden's wound vac is set to 50mmhg. It plugs up but can be unplugged and attached to his IV pole to push around or we can carry it by the handle. There is a tube that goes from the vac to a black, foam sponge that is the shape of the wound. The sponge sits on his open wound and collects debris and fluid. The entire wound is sealed by a clear tape. The tape has an opening where the tube is attached. The fluid it sucks up goes through the tube and into a clear canister on the side of the vac. This helps pull the edges of the wound together. It also helps the wound heal by promoting the growth of new tissue. The tape and black sponge is what has to be changed three times a week to prevent infection. The idea is to need a smaller and smaller sponge each time until eventually the wound has healed and closed itself.

February 19, 2021 (Day 36 in the hospital) -1st wound vac change 

We haven't really done too much today other than going to the play room. Our new room has a shower with a bench and hand held wand so they allowed us to give Rayden a shower about one hour before going down to his procedure. They were actually hoping the water would help with the adhesive a little. The nurse disconnected his PICC line and covered it with a giant protective sleeve. Everything else could just have the water run over it. He knew something was up when I wouldn't allow him to eat again. I told him he was not going back to the OR but we were going downstairs to a room where they had to change his new pump tubing and clean it out. He didn't really like it but seemed to understand. Around 2pm they took us to a procedure room. When we got there Rayden started getting anxious and crying just a little. I told him Mom and Dad were here so it's not the OR. The nurse kept his attention by playing with his slap bracelet. 

Within 10 minutes they had him hooked up to machines and gave him the precedex and propofol. They escorted us out but came to get us within 30 min. The doctor said it looked like there was good granulated tissue there but the wound had not made any progress toward healing/closing yet. We need more time. I'm praying that Monday will show drastic difference. I hate they have to put him to sleep each time they do this because he can't eat prior to the procedure and it takes him hours to wake up. He told me that he wanted chicken wings and tater tots when he finished his procedure, so guess what he got. 

February 20, 2021 (Day 37 in the hospital) 

We have had a pretty uneventful day. We went to the playroom and colored a stain glass butterfly. The infectious disease doctors say Rayden can discontinue both IV antibiotics (Flagyl and Ceftriaxone)! We are thrilled about this because it means he will NOT be hooked up to the IV pole and he WILL NOT come home with a PICC line! He will remain on the oral Fluconazole for a little while longer and, of course, the PICC line will stay in place until the day he is discharged. They just heparin block it and disconnect it from the lines. The VAC is not producing much more fluid in the canister anymore. We saw a constant flow before they changed the sponge yesterday, now hardly anything is in the tube. What is in the tube hasn't moved in a while. I've asked the nurses and they say that if it were broken the machine would beep at us. I hope it's still working. Maybe it is drying up. 

We received a great blessing today when Aunt Patsy and Granny brought Rayden a TON of stuff. He was so excited to receive pizza, gifts, PJ's, cash, gift cards, kool-aid jammers, sweet tea, and lots of candy and snacks. I could barely bring it all up in the wheelchair. Out of all this variety of items to eat, his first pick was BBQ Viennas! He loves those things. 

They also brought the cards and giant poster from the Kindergarten classes at MES. He was so thrilled that every student and teacher in Kindergarten signed it and, of course, it had his favorite super hero right in the middle. We hung it over his bed. 

We just cannot thank everyone enough for always thinking of us during this trying time. 

February 21, 2021 (Day 38 in the hospital) 

Absolutely nothing new today. Rayden is feeling fine. We are just hanging out waiting to get his Vac changed tomorrow morning. He will not be able to eat past midnight again but at least this procedure time is earlier than the last. He knows he has to get his vac changed and doesn't seem too worried about it. 

His most favorite activity lately is getting on our sofa bed and aggravating his dad. He wants to pull his hair, punch his belly, tweak his nose, and just keep his hands all over him. He thinks they are having a slumber party when they are both in the bed. Rayden says his slumber party is for Daddy's and boys only-no Mommy's. Although Michael won't admit it, I know he enjoys that special time. 

February 22, 2021 (Day 39 in the hospital)-2nd wound vac change

Rayden had his second wound vac procedure today. He wasn't afraid a bit until the anesthesiologist came toward him with the oxygen nose cannula. He fell apart and I quickly said "Wait until he's asleep for that. He hates it!" The man quickly dropped it and told Rayden he didn't have anything in his hands. (They put that bit of information in his chart from now on.) We asked them not to use as much anesthesia as they did the first time because he was asleep for over 6 hours. This time he only used propofol and Rayden woke within an hour. The vac change only lasted about ten minutes. They emptied the 50ml of red, bloody fluid inside the canister. Dr. Damitz said the AlloDerm is starting to allow red tissue to attach. That means his body is accepting it not rejecting. The wound looked yellow and pussy in the pictures from Friday's change, but not anymore. She said good granulated tissue is now forming. Although the wound is NOT smaller, it looks much better. Originally she planned for him to need only three wound vac changes but now she added a fourth. Therefore we are definitely staying until Friday, then they will reassess. 

Rayden is such a popular little guy up here. People that are not even associated with him for the day just come in here to talk to him. The orderlies, custodians, food service staff, child life staff, nurses, docs, and even the pre-op and PACU nurses all know him by now as well. No matter where we are people stop us to talk to him, and if they don't know him, Rayden stops them and talks, haha!! Andrew, the science guy, has asked permission to use pictures of him doing the activities in their Wonder Connection advertisements. He's gonna be something BIG one day! 

February 23, 2021 (Day 40 in the hospital) 

Rayden woke at 1am screaming and moaning that his stomach was hurting. He continuously did this throughout the night any time he woke up. We were afraid he would feel terrible when morning came but that wasn't the case. I suppose he just had a tummy ache. He did have a slow start to the day but eventually made the best of it. He met with his hospital school teacher, practiced writing his name, went to the play room, read a book with Mommy, made slime, a colored sand butterfly, and completed his dino excavation with Daddy. 

Dr. Damitz said they have all been talking about how they could send us home, or at least over to the Ronald McDonald House. She has a list of concerns though: 

1-Home would be better than RMH because we would be exposed to less people at home. 

2-We live so far away. 

3-Riding in his car seat will be painful for that long and could cause damage.

4-We would have to come back 3 times a week to change the vac dressing. 

5-He would need a COVID test every time we returned of which is still up in the air because they require a COVID test 3 days PRIOR to each procedure-kind of hard to do when each procedure isn't 3 days apart. 

6-Getting him in and out in the weather so much. 

Dr. Elton stated Rayden was in the 1% of children he has seen this happen to. Sounds like Rayden...he dares to be different! 

The floor doctor mentioned taking out his PICC line and putting in an IV instead. I quickly yelled, "NO!" She said if they are not putting antibiotics in it then it is more susceptible to infection and blood clots. This is very dangerous because the PICC line goes straight to his heart. I understand that but I also know that it is extremely difficult to get IV access on him and even if they do, it doesn't last long. Since he has to be put to sleep three times a week it would just be easier to leave the PICC line. She said she would think about it, but she's pushing to take it out!