February 27-March 1, 2021 "Wound vac change #5"

February 27-28, 2021 

(Days 44-45 in the hospital)

Another weekend of just sitting here trying to heal. Nanny and Papa brought us some items from home and the door people allowed them to come into the lobby for a visit. I'm not sure if it's because the lobby is like a ghost town on the weekends, or because Papa told them he needed to use the bathroom. Either way, they let them in. We sat in the lobby and talked for a while. 

We have been practicing numbers, Rayden's name, and letter recognition here and there but we received his actual makeup work this weekend. We tried to gain some normalcy by completing a few sheets to help pass the time. (Not really his choice of fun things to do). 

Uncle G came and took Michael out to lunch. They brought Rayden some McDonalds to have outside for a picnic. When we made it to the Labyrinth area outside for the picnic Uncle G was sitting there to surprise us. We didn't know he stuck around to enjoy some time with Rayden. We enjoyed the sunshine and fresh air. Rayden even picked up a lizard and tried to throw it at me! Yes, I love being a "Boy Mom!" 

I am concerned about the drainage in the canister today. The first time it was changed it looked bloody. The second time it looked like clear apple juice. Now it looks like milky apple juice. I hope I'm just being paranoid but the nurse noticed it as well. Since he has another wound vac change in the morning, she said there really isn't anything to do about it until then. 

March 1, 2021 (Day 46 in the hospital)-5th wound vac change 

Before we went down for the 5th wound vac change this morning, Rayden had a photo shoot. Chapel Hill Magazine took pictures of him getting Wonder Connection science activities from Andrew. It should be in the April edition. I can't wait to see how it turns out. 

They gave Rayden Ativan before the procedure this time hoping it would calm him down so he wouldn't be so frightened. When we got down there the anesthesiologist had purchased a surprise for him over the weekend. She gave him a frog flashlight that hangs on his carabiner. He was so tickled. I was blown away that she thought enough to order him something on Amazon and have it next day shipped just so she could give it to him today. So very thoughtful. 

Dr. Damitz said the wound looks much better today. She was actually worried when she saw the cloudy fluid in the canister but the wound itself didn't look anything like she was expecting. She said it had nice, red, beefy tissue all the way around the AlloDerm. She did have to debride one small area of skin but other than that, it is looking great. She was very pleased. It's so hard to tell how big the wound is from the pictures but the nurse said it was bigger than the size of a quarter and rather deep.

When Rayden finally started waking up in the recovery room he was not at all himself. He was angry and irritated. He started pulling everything off of him, and leaning so far off the bed that he almost fell off. He was crying very loudly and screaming. Nothing could soothe him. He couldn't sit up without falling over, his speech was slurred, and he was so drunk headed. This continued even when they brought him back to his room. They are constantly telling me how he needs to eat a lot of protein so I ordered him a cheeseburger. We finally got some food in him and he began to feel better. I don't think we are going to let them give him Ativan again. 

I complained to the doctor last week that Rayden has missed 6 weeks of PT, OT, Speech, and school. I am working with him as much as I can, but Lord, I'm tired! He's falling behind and I just can't do it all with no real rest or a mental break. They agreed, and he had an actual Physical Therapy session this afternoon for about 30 minutes. He enjoyed it so much that he thought he was doing gymnastics again. (He used to go to Elite Gym and LOVED it.) That was the extent of my break today! As soon as she left he wanted to walk the halls to talk to people for 30 minutes, followed by his hour in the play room. 

February 25-26, 2021 "Wound Vac change #4"

February 25, 2021 (Day 42 in the hospital) 

What a gorgeous day for a picnic in the courtyard. Once we got out there Rayden walked to the bench with his walker. He enjoyed listening to the birds sing, watching the crane, feeling the warm sunshine, taking nice fresh breaths, and counting the 8 other people out there. He loves to have a picnic, even in our own backyard, so I knew this would be a great treat for him. We even used his lunchbox the nurses gave him. He walked all the way back to the building UP HILL as well. 

The nurse showed me the pictures of Raydens wound they have been taking at wound vac changes. It really helped me understand what they were talking about. The white part in the center of the opening is the AlloDerm patch. It is held down by tissue glue and permanent stitches inside the opening. Dr. Damitz said the AlloDerm has to be completely covered with tissue growth before we can transfer to wet/dry dressing. Although I can clearly see the wound getting better, I also believe this is going to take longer than one more week to heal over. 

February 26, 2021 (Day 43 in the hospital)-4th vac change

We went for Rayden's 4th wound vac change at 9am. They discussed giving him some Versed or Ativan BEFORE he comes down next time because he is getting more and more nervous with each procedure. They emptied the 50ml of fluid in the canister that looked like apple juice instead of red and bloody like before. The wound really doesn't look any different from Wednesday so we are just staying the course. 

Rayden wasn't able to meet with his hospital teacher or go to the playroom today, but he did some science experiments. He made a volcano and an exploding rocket. I believe we have a scientist on our hands. 

February 24, 2021 "Wound vac change #3 "

February 24, 2021 (Day 41 in the hospital)-3rd vac change

They came an hour early to take Rayden for his 3rd wound vac change this morning. Everything was fine until the people started coming into the procedure room. He looked at me with tears in his eyes whispering, "I don't want to do this." The anesthesiologist quickly grabbed the propofol as I rubbed his chest calming him down. It only took a second for him to fall asleep so we lowered him down. That is the moment Michael and I leave the procedure room. I hate that he is getting more scared with each of these vac changes. 

Dr. Damitz stated that there was no cloudy fluid today at all, unlike the past 2 vac changes. She believes the AlloDerm patch is finally doing what they want it to do. It doesn't look moist or weepy like it did before. It's nice and dry. The red tissue is beginning to grow through the peripheral. Now she wants that to grow OVER the AlloDerm. Then we could do the wet to dry dressing and go home. Although she is happy with the progress, it isn't going as fast as we all hoped. She placed him on the schedule for vac changes ALL NEXT WEEK as well. 

Rayden woke quickly this time ready to eat. The nurse taking care of him told me they huddled before his procedure because the floor doctor wanted them to remove his PICC line and insert a regular IV. The plastic surgeon and all the nurses disagreed. She said she looked for IV access but his veins just aren't there. She changed the PICC line dressing and told the floor doctors she recommends keeping it. (She actually put it in, so she knows his history.) 

It was a gorgeous day today so the nurse allowed us to take Rayden outside to grab some sunshine. We had a pass to leave the floor (not the hospital) for an hour. We took him in a little wheelchair to the patio just outside the Starbucks. We found a corner where the sun was shining so brightly it actually began to feel hot. Rayden walked all over the patio a couple times with his walker. He felt free, if only for that hour. His favorite nurse, Alissa Dunn, came to the patio as well. She remembered how Rayden liked the caramel in daddy's coffee one time so she got him a little cup of it. He enjoyed sipping it a little but of course it's too sweet to just eat straight caramel. 

Our science activity today was diffusion with Skittles. Rayden enjoyed watching the colors bleed off the Skittles into the water and run toward the center. 

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! 

February 17, 2021 "Surgery #17-Alloderm over spinal canal/wound vac placement

February 17, 2021 Surgery 

(Day 34 in the hospital) 

The plastic surgeon intern came at 6am to find the wound open even more. The JP drain bulb will not even stay compressed anymore because it is sucking air instead of fluid. The bandage covering his wound is now saturated with fluid because the drain isn't working. The nurse changed the dressing over Rayden's PICC line yesterday afternoon. (It has to be changed once a week.) The line kinks under the bandage now every time he bends his arm making the IV beep constantly. When he holds his arm stretched out it goes off. Rayden likes to sleep with his little hands folded under his face so we heard that thing ALL night! 

Rayden worked his job at the front desk for about an hour this morning and then realized he had not eaten breakfast. It didn't take him long to realize what was going on when we didn't allow him to eat. From then on he was kind of crummy acting. He just laid around and kept whispering "I'm NOT going into the OR!" It just broke my heart. I certainly didn't want to make him go back into the OR but what choice did we have? 

The transport came to get him about 4:30. I placed the anointed hanker chief from Sanson Community Church underneath his pillow. Rayden turned into a statue when we placed him back in the bed. He knew what was going to happen. He didn't cry, but you could see his sweet little face was full of worry and fear. He didn't stay in pre-op long at all. Everyone actually met us at the door looking for hunter man. Rayden was given the versed and precedex into his PICC line to get drowsy. He began to telling the anesthesiologist NOT to put that smelly mask on his face again. She promised not to do that and they rolled him into the OR around 5pm. The first thing they did was change his PICC line bandage so it didn't kink anymore when he bent his arm. At 6:15 both Dr. Elton and Dr. Damitz came to our room to tell us about the surgery. Dr. Elton stated when they got him uncovered he had stool packed into the opening! I couldn't believe that!! We have been so super careful with his diaper changes and we had just changed him before they took him down. The only thing I can figure is that he got so scared that he pooped and with all that moving it got squished up his back. I know both doctors are aware of how careful we are with him so I know they understood this incident. They, of course, cleaned it all out and scrubbed it up real well. They did another culture but who knows now what it will show because of the stool. Dr. Elton stated again that he didn't see any spinal fluid leaking! He even did three pressure tests. He saw a tiny pathway in the tissue going northward. He investigated to see how far it would go just to make sure it didn't tunnel all the way to the top. It didn't, and he put a couple of stitches deep inside to close the tunnel. They both agreed he had super healthy tissue in there. They didn't see any puss or anything to suggest infection or fungus. They do believe he had a ton of swollen tissue of which was being expressed out the JP drain. They believe it will heal well with the vac. The vac is only over a small opening. Dr. Damitz scheduled pediatric sedation Friday, Monday, and Wednesday to change the dressing. It's not going back into the OR, it's just sedating him enough to change the dressing. The hope is the vac will close the wound itself without her having to actually sew it back together. We shall see. 

The PACU called me to go see him at 7pm. He only needed a dose of Tylenol and Valium for the leg cramps. This is the first time he has ever come out of the OR and not needed a ton of narcotics to calm his pain. All the prayers and the anointed hanker chief really worked. We were back to the room by 8pm where Rayden ate an entire ham and cheese sandwich, applesauce, and half a gatorade. He was starving!

We have spent 34 days in a tiny, little room with a broken window blind. We couldn't see out, and could barely squeeze between the beds, chairs, and bathroom door. While Rayden was in the OR the nurses moved us into the giant corner room. Since we have been here so long with no real end in sight AND since Rayden is the employee of the month, they decided we deserved a bigger room. This room is HUGE with a giant window! 

February 15-16, 2021 "We are NOT going home!"

February 15, 2021 (Day 32 in the hospital) 

WE ARE NOT GOING HOME!!!!!!!!!! I couldn't be more upset. This morning the plastic surgeon interns came to change the dressing only to find that there was a linear separation (hole) in the incision. They said after Dr. Damitz did her first surgery today she would come up to see us. When she came, around 10:30am, she had the floor doctors with her. They all looked at it and agreed that he needs to stay longer. She wanted to call Dr. Elton and see if he had any suggestions. Dr. Damitz is not confident that they have cleared the underlying root of the problem, whether it was a CSF leak or the fungus. She's debating if they just need to let it do what it's going to do while they finish the full course of antibiotics so they know that the fungus is taken care of and THEN fix the left over problem. She thinks that if she does something operative then it may end up the same way again. She said even though the drain isn't producing but 8cc a day, after a week that is 50cc pooling under the skin to push it back open. So we are glad she left the drain in place. She's going to talk to infectious disease about how long they need to wait or if they need to do more cultures. 

Around 4pm we changed Rayden and found that that linear separation had indeed turned into a large hole!

Between the two yellow sections, underneath the scab is a large tunnel (you may have to zoom in). I called the nurse who in turn paged Dr. Damitz. She was in the OR again, but sent word that she would come as soon as she got out. When she arrived, only two hours later, the entire yellow section at the top was gone! She was glad we called her. She cleaned it with a qtip and I could see that it was deep but NOT so deep that I could see his insides like last time. It actually had a layer of skin in the bottom of the hole so that's a good thing. She hollowed it out underneath the scab and placed a wet packing strip inside. Again, she stated she was waiting to hear from Dr. Elton. She mentioned using a wound vac this time and how that meant going back into the procedure room and changing the dressing three times a week. 

What a roller coaster! We are at a loss and feel like we are back at the beginning again with packing the wound! 

February 16, 2021 (Day 33 in the hospital) 

This morning his incision was WORSE!!!!! The hole is getting bigger by the minute. The plastic surgeon intern was shocked when she took down the bandage. She even said a choice word! The hole was more hollowed out and looked even wider and deeper. The JP drain bulb will not even stay compressed because the hole is so large that it is sucking air instead of fluid. Dr. Elton and Dr. Damitz had a meeting to devise a game plan. They decided to do surgery tomorrow! This just can't wait anymore. 

1-Dr. Elton will do his part first. He is going to open up the bottom part of the incision and place a layer of AlloDerm over the spinal canal where the CSF is leaking, even though he said AGAIN that he isn't confined it is leaking. He said if it is a leak, it is awfully small so this is one last attempt to fix things. AlloDerm is a mesh-like, freeze-dried sheet/patch of donated cadaver human skin. They have removed all the cells from the donated skin, while retaining all of the important biochemical and structural components. As the body's natural processes take over, your own cells move into the AlloDerm. Over time, your cells transform the AlloDerm into your own healthy tissue. Dr. Elton will use a continuous permanent stitch (not dissolvable) all the way around the patch and then tissue glue to really seal everything up. His worry is that the patch does not have blood supply and it will take a while for Rayden's body to replace it with his own scar tissue. His worry is that we have this patch and then we have skin over top of that. The skin has blood supply and should grow blood vessels into that patch but it takes some time for that to happen. So it's a race between his body dissolving it or his blood accepting it. 

The only other thing he thought he would do if this doesn't work is go higher up the spine and put in a fluid drain to divert CSF away from that area. But that is extremely dangerous going into the spinal cord and he doesn't want to put him at risk. He honestly thinks its a blood supply problem not CSF leak. He stated again that most people with Spina Bifida just don't have good blood supply in several areas of the body and the skin will break down. Rayden's feet have this issue all the time. 

2-Dr. Damitz will do the second part of the surgery. She is going to wash it all out and do another culture. She didn't want to use a wound vac before because Rayden will have to be put to sleep three times a week to change the dressing! That's a lot on a little kid. Unfortunately, she thinks this is the best option at this time. A wound vac is a foam sponge that goes under the skin and over the OPEN wound. The vacuum pump creates negative pressure around the wound. This means the pressure over the wound is lower than the pressure in the atmosphere. The pressure pulls the edges of the wound together. She said the negative pressure of the suction will help produce collagen to allow the wound to heal faster. It should cut the healing time in half. She will decide later in the week how long the vac needs to stay in place. If she starts seeing red tissue growing in then she will take out the vac and close the wound. She may just do a smaller and smaller sponge until it eventually closes on its own. 

Rayden was voted Employee of the Month by the staff of 7th floor. They all signed the back of his certificate and even gave him a lunch box so he could bring his own snacks to work. The boss gave him a chapstick holder and a little flashlight that goes on his badge just like all the nurses wear. He's really official. He loves to do his job as door man but mostly enjoys talking to everybody at the front desk. 

 

Special shout out to Uncle Don & Aunt Kathy, Bethal Hall, Michele Mitchell, and Kallie Goudey for the monetary gifts of love. We want to say Thank You to so many people that are praying for us daily. We have received so many well wishes that it is impossible to mention everyone. Please know that we appreciate every one of you. 

 

 

 

February 14, 2021 "Rayden get's a job!"

February 14, 2021 (Day 31 in the hospital) 

What an exciting day! Rayden has actually been hired by UNC Childrens 7th floor! He is the official door man and has worked for over three hours today. He even has a badge and protective glasses! Charge nurses Meghan and Liz have taken him under their wings today. He has collected things from the medicine shoot, placed papers in the shredder, taken things out of the printer, put sticker labels on papers, highlighted papers, pressed the button to open the door, kept his eyes on security cameras and even went to a staff meeting! When it was his time to go to the playroom he cried because he wanted to do his job instead, have you ever??!! When the night shift nurses came in he had to give them all their green sticker for their badges. 

He even has his very own computer that has been adjusted to just his size. I'm beginning to wonder if he's thinking about changing his profession from fire fighter to medical professional. 

Meghan, Liz, and Alissa were so upset because this should be their last time seeing him (if he goes home tomorrow). They came in to say goodbye and actually teared up. They all brought him a sweet valentine and candy. It's amazing how you become so attached. They have all been so wonderful to us. Rayden has received excellent care from these nurses. 

Rayden received a sweet Valentine surprise from his dear friend and neighbor, Nathan. He also received a bag of valentines from a church near by and a special hand written valentine from his favorite nurse, Alissa Dunn. He made her some paper flowers as well. 

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.