January 23-26, 2021 "Surgical wound infection and Surgery #16"

 

January 23, 2021-(Day 9 in the hospital) When we got up this morning Rayden was feeling pretty good. He enjoyed sleeping with Mommy. The bandage over his incision was saturated and had leaked through his PJ's and onto the pad I placed on the bed. Upon opening the bandage we found that the bb sized hole was slightly larger. I immediately called Melody who in turn called Dr. Elton. He apologized profusely but insisted we head back to the ER. I knew he would say that and I had already been gathering our things. (We never really unpacked!) We could not bare to put him back in that carseat again so we reclined the back seat and marshmallowed him in. He was not in pain and actually enjoyed the ride in the 'big boy' seat, such a relief. We arrived at the ER around 12:00 and they were waiting. The Neurosurgeon on call came and took a picture of the wound. He said it was bigger than Dr. Elton had described over the phone. It had indeed gotten bigger on the car ride here. It seemed to be almost the size of peanut M@M now. It had a yellow slime coming out of it as well. He originally thought he could just put a stitch in it but that won't work. He walked out the call Dr. Elton. When he returned he said Dr. Elton and the plastic surgeon would have to do a revision surgery soon. He was admitting Rayden back into the hospital. Around 3pm they started another IV, completed another blood culture, another wound culture, and another Covid test. He was soon receiving 3 super strong antibiotics back to back (Rocephin, Clindamycin, and Vancomycin). Around 5pm we were transported up the 7th floor again. They started the 3rd antibiotic, Vancomycin, around 8pm and he started screaming with his head itching and was turning red all over. He was twitching and his heart rate was dropping. Luckily the nurse was standing in here and knew exactly what it was, Red Man Syndrome. I had never heard of this before. 

Red man syndrome is an infusion-related reaction peculiar to vancomycin. It typically consists of a rash that involves the face, neck, and upper torso. Less frequently, hypotension and angioedema can occur.

The nurse quickly grabbed some Tylenol and Benedryl. I thought they would stop the Vanc after this reaction but I was told this was a 'last resort' medicine and he may not survive the infection if he doesn't receive it. They slowed down the infusion and he is now continuing to take Tylenol and Benedryl around the clock as well. 

January 24, 2021-(Day 10 in the hospital) Rayden he slept very well with the Benedryl on board and woke ready to eat some breakfast. The doctors came in apologizing profusely! His incision is now bigger than a half dollar! It is still oozing goop and you can literally see his insides!!!! The nurse packed it with wet gauze and covered it with a clean dressing. I cannot even fathom how painful that was. I know he was screaming this ear-piercing scream I had never heard before. The plastic surgeon came in to explain how they were going to treat this mess. She stated that they refused to touch it without Dr. Elton present because it is so close to his spine. They scheduled surgery for Tuesday. She went over all the possible outcomes. 

He could need a wound vac, skin graft, butt or side tuck, or even more than one surgery. All the doctors cannot believe how fast this is progressing. 

They stopped the Clindamycin, and Rocephin to add an even stronger medicine called Ceftazidime. They are continuing the Vanc as well, even though he had an allergic reaction to it. They literally said they could treat the side effects, but they have to kill the infection before it kills him. They said out of all the patients they have on the floor today, Rayden is the top of the list. That sounds good but it literally scares me to death! Dr. Steven Papas even came in to pray over Rayden. He said he felt first hand how God is working in Rayden's life. He was having a bad day when Rayden started running over him with his walker the other day. He said that he felt God remind him why he became a doctor. How powerful! This little boy is going to do great things for the Kingdom of God. 

Daddy and Uncle G went to get Rayden a pizza. He ate three pieces. At least he is still eating. We were able to get him up to sit in the chair for a while but of course they won't leave him alone. They had to draw blood again because the medication he is on is so strong they have to keep an eye on his blood. When we moved him back onto the bed around 6pm I noticed the bandage was soaked through with bright, red blood. I immediately called for the nurse and the doctor. They gave him some oxy and waited 20 minutes to open the bandage. It revealed active bleeding but not that much green goop. I couldn't hold it in any longer. Tears started flowing down my face. Thank God, Rayden was looking the opposite way. The doctor took a picture for his chart. She tried to calm me down by saying she was going to page Dr. Elton right now. That got me heated and I said "They said they couldn't do surgery until Tuesday because he has clinic in Wilmington Monday. He needs to cancel his clinic because they are not emergency cases. THIS IS!!!" She agreed and said she would tell him word for word what I said. It wasn't 15 minutes and she called me saying that Dr. Elton would come first thing in the morning but he doesn't think it's an emergency because the spinal cord is not exposed. I got so angry and yelled, "WHAT?" The doctor replied, "I know, right!?" I don't know how to feel right now; disappointed, disgust, angry, sad, terrified, or all of the above. 

January 25, 2021- (Day 11 in the hospital) 

Dr. Elton never came! He sent his intern in here at 5am. I yelled at her and told her to leave in a few choice words! I confirmed with the doctor that I heard correctly what she said last night and I wasn't hearing things. I've always respected Dr. Elton, even called him our hero and part of the family. I'm not angry that Rayden got an infection. I know these things happen. I'm angry because he's laying here in pain because no one will touch it and he won't come. I'm angry because he hasn't even so much as called me himself to calm me down as the parent of his mess!!!! That phone call would have gone a long way!! 

The wound is bigger again today. The nurse measured 3/4 inch long and 3/4 wide!! It was only 1/4 inch two days ago! You can literally see his muscle underneath the opening. The large incision has pin hole openings as well. Both incisions continue to have the oozing of yellow goop in them.

We were able to sponge bathe Rayden today. Even though he didn't want it, I know he has to feel better. He ate a pretty good breakfast but really doesn't seem to have much of an appetite. We were also successful in getting stool today before surgery. 

The doctors told us last night that the wound culture is now growing gram negative. Gram negative is harder to kill than gram posititive. This bacteria causes infections including pneumonia, bloodstream infections, wound or surgical site infections, and meningitis in healthcare settings. They are resistant to multiple drugs and are increasingly resistant to most available antibiotics. They have built-in abilities to find new ways to be resistant and can pass along genetic materials that allow other bacteria to become drug-resistant as well. Around 4pm the floor doctor informed us that the wound culture is now growing a second bacteria called anaerobes. (The gram negative is still growing as well.) Anaerobic bacteria are germs that can survive and grow where there is no oxygen. For example, it can thrive in human tissue that is injured and does not have oxygen-rich blood flowing to it. Infections like tetanus and gangrene are caused by anaerobic bacteria.

They added a new antibiotic called Flagyl to work on the anaerobes. So now he is on Vancomycin, Ceftazidime, Flagyl, Benedryl, Tylenol and his seizure meds. The funny thing is the bacteria are growing from the culture we took BEFORE they sent us home after surgery. Hmmm, just let that sink in for a minute. 

The doctors discussed placing a PICC line during surgery tomorrow so Rayden will have a better/stronger way of getting these antibiotics. A PICC line (Peripherally Inserted Central Catheter) is a thin, soft, long catheter (tube) that is inserted into a vein in the arm, leg, or neck. The tip of the catheter is positioned in a large vein that carries blood into the heart. It is used for long-term IV antibiotics, nutrition or medications, and for blood draws. The two ladies that are going to do this tomorrow came to look for a good vein using an ultrasound machine. They found a good one in his right arm but not in his left. I thought I would just die when she was going over the risk factors. I mean, if it can go wrong it sure seems to have done it!!! I don't want to do this to him, but at least he will be asleep and it will be so much better on him after surgery because he won't have to get stuck over and over. As of right now Rayden's surgery is scheduled for 3pm, although it may be changed due to the circumstances. 

Dear God, I am overwhelmed by the things I cannot control. Help me place my trust in You. Remind me You are in control of all things. Help me to believe Your ways are good and You have a plan, even if its' not the outcome I desire. They say it only takes a little faith to move a mountain. Good thing, because that's all I have right now! I know You're able and I know You can save through the fire with Your mighty hand. But even if you don't, my hope is You alone! I know the sorrow and the hurt would all go away if You'd just say the word. I can't help but wonder why Rayden has to go through so much! Keep Your hand on Rayden, and the surgical team. Make him whole again. Show the world Your miraculous power through Rayden. In Jesus name, Amen. 

January 26, 2021-Surgery (Day 12 in the hospital) 

Rayden slept pretty good last night. He woke to them poking him for blood again at 6am. They just have to keep a very close eye on him with this strong medicine. I'm interested to see the blood results today anyway because he is so very pale. He has absolutely no color in his face at all. He is just laying there not talking either. He's just not himself. 

This morning the hole isn't any larger in diameter but it is very much deeper and the large incision is opening up as well. I'm so afraid for him. I don't know how in the world they are going to be able to close up his little back. 

The surgery got moved up to 1pm today. Dr. Elton came this morning around 11am. I was so upset I didn't speak for a few minutes and when I did it was through tears. He wanted to know why I was upset. I won't go into detail here, but of course I explained and asked how he would feel if it were his child laying here for three days with a gaping hole in his back. His response was simply, "I hear ya!" He certainly didn't apologize that this happened and really didn't even seem sympathetic. 

Transport came to take Rayden down to pre-op around 12:30. We spoke with so many doctors I lost count. This was nothing like we have had in the past. Rayden was actually calm. I know that is due to all the many, many prayers going up for him. They rolled him back at 1pm.  Around 2:30 the OR nurse called with an update. She said he was asleep and comfortable on the table. The old IV blew so they started three more. They had difficulty with the PICC line and the nurse would come tell us about it shortly. When she arrived she stated that the PICC line went in beautifully into his arm but instead of going down into the chest it went up into his neck. No matter what they tried they couldn't get it to go down. They are hoping gravity will pull it down while he is upside down on the OR table. They will do an X-ray in post-op to see if it is in the right place. If not, we should expect another procedure tomorrow. 

Around 3pm Dr. Elton and Dr. Damitz began their portion of the surgery. He came to the room at 4:30 to tell us how the surgery went. He stated that the area that had broken down was over bone and super thin so it didn't have good blood supply. This is common in Spina Bifida kids. There just isn't any tissue under the skin down there. He cleaned out the wound very good but DID NOT do a wound culture because he didn't see any infection. (Hmmm) He said he used over 300 internal stitches!! They pretty much skinned him (like you would a fish) from the center of his back around both of his sides to his belly. They stretched the skin a little, put a few stitches, stretched the skin, more stitches, over and over until they eventually got to the middle of his back (lateral tummy tuck). That took all the tension off the incision line. The skin actually overlapped so they had extra to work with. This was a wonderful thing because it gave extra coverage over his spinal canal. The stitches on the outside will have to be removed in two months under sedation. He has a drain tube/bulb as well. It will be removed later. He will lay in bed, on his side, until tomorrow afternoon when he can sit up in bed. Then maybe, if his pain is bearable, we can try getting out of the bed Thursday. He finally admitted this IS a big deal but thank God he didn't have a spinal fluid leak. He finally apologized about it not being done sooner. 

Around 5pm I was called to the PACU to see Rayden. He was still in a lot of pain. I immediately asked for his Hunter Man (he went into the OR with him again) and that seemed to make him feel better. The nurse had already given him 2 doses of Fentanyl, 4 doses of Morphine, and called the anesthesiologist for permission to add Motrin and Oxy. With all this on board he was finally ready to go to the floor but the X-ray team arrived. They wanted to pick him up and slide a hard, black, square plate UNDER his back! He just had back surgery! I was distraught, but they needed to see if the PICC line was in place. The nurse tried to pick him up but he screamed wanting his Daddy. Only one parent is allowed in the PACU but the nurse stopped immediately and called the room to get his Daddy. So precious. We were able to get the X-ray when Daddy got there but that was so agonizing for him. Unfortunately the PICC line had not moved into the correct position so they plan to repeat this again in the morning!! 

January 19-22, 2021 "Going downhill"

January 19, 2021 (Day 5 in the hospital) Rayden's bladder continued to fill up but he wasn't voiding on his own. The nurse did two bladder scan's over night. At shift change Rayden starting feeling very uncomfortable. The new nurse did a bladder scan that revealed his bladder was indeed full (200) so she did another in and out cath to relieve the pressure. Docs decided to get a urology consult. Dr. Elton came and said Rayden looked good but not sure if he could go home today, maybe tomorrow. He wanted to see how he does with PT today because yesterday was so bad. PT came around 10am after the nurse gave Rayden some oxycodone. He sat up in the bed pretty well but when we stood him to his feet it was pure agony. His knees buckled and he started screaming that his left leg was hurting (just like yesterday). We eventually got him to take three steps to the recliner and he sat there crying badly for a while. PT decided she would try again this afternoon. Rayden sat there getting acclimated to sitting upright for a good hour, which we believe helped his core muscles as well. Then he got brave enough to walk with Mom and Dad over to the couch bed across the room. Michael had him under his arms and I held onto his core. His legs were very week but he made it. 

Around 2pm PT and OT came back. The nurse gave Rayden some more oxy for the pain and we got him up and moving. It was very painful but our little fighter toughed it out. I liked what the therapists did. They had a game on the hallway walls where he could scan as he walked along. After he scanned the picture he could play a little game. He was very interested and the very first picture just happened to be right outside his door. He walked to the first picture and stood there with the phone to play the game but he got very weak and his eyes looked glassy so they grabbed the wheelchair. They pushed him to the next one, and made him walk to the following one. It went like that until the last stretch where they made him use the walker to walk to his room. I hated to see him go through the pain but he got stronger with every step. He was exhausted and wanted us to rub his legs. 

Rayden's bladder was still not emptying properly so around 3pm the nurse cathed him again and he fell off the sleep. Around 6pm he woke in AGONY, screaming that his stomach was hurting. We immediately called the nurse. Rayden's temperature was over 102 and he wouldn't stop screaming in pain. The nurse paged his doctor, did another bladder scan, hooked him back up to the monitors, and admitted his scheduled Tylenol. When the doctor called her back she was getting ready to re-cath him to empty his bladder. The doctor said she was doing something and asked (on speaker phone) if she could wait ten minutes or if she was needed now. I yelled, "NOW! Isn't that what a page is?" She came immediately. She said it was normal to have a temp after surgery but I replied, "Fever five days out isn't NORMAL!" She looked at his incision, took a picture and said it looked very red and fevered. She sent the picture to neurosurgery for review. We compared her picture to the one I took yesterday and she said it looked the same. She was shocked that I took a picture. I looked her square in the eye and said, "This ain't my first rodeo!" His heart rate was over 180!! She ordered a CBC, blood culture, urine culture, covid test, and a round of IV antibiotics. Luckily his IV was still working. I told her I believed it was urology related because he had never had a folly cath post-op and he's also never had any issues with his bladder or kidneys. She said she ordered the urology consult earlier today (just like Dr. Elton requested) but they said they wouldn't change the course of treatment and didn't come up to see him. That flew all over me and I got soooo angry. You have a spina bifida patient (they are very prone to UTIs), with a seizure disorder (fevers trigger seizures), post op, never had bladder issues before and now bladder won't wake up and you don't think you need to come see him or at least go ahead and order a culture since they were in and out cathing anyway??!!! They waited until he got a temperature, screaming in agony to do a urine culture! Yes, I was angry!! I told them he was a very hard stick and needed to get the 'special team' but they tried anyway without any luck (of course)! When are they going to listen to me?? The special team came to get the blood and she even stated he was very difficult and I needed to get angry from now on and demand special team for blood draws and IV's. Even though he had the Tylenol on board his temp went up by 8pm to 103.82! The nurse called again and they gave him some Motrin and ordered an IV bolis. He vomited the Motrin right up and I was getting beyond worried. After cleaning him up, emptying his bladder again, and more Motrin, he dozed off and his temp started going down. 

January 20, 2021 (Day 6 in the hospital) Of course, the nurse was in and out all night. She did another bladder scan around 4am that revealed 171. His orders were changed to not allow over 120 so she had to cath again. She showed me that his urine had mucus in it. Although the blood and urine cultures have not come back yet, the lab did say his urine 'looked nasty'. Covid test was negative. The urologist on call decided to pop in this morning after I complained to the floor doctors. I quickly and sternly let her know how angry we were that they didn't come up here when they were paged and they didn't order a culture until he had a temperature of 104! She stated there was no need to do a culture if there were no signs of infection. This made no sense to me, because they were already in and out cathing. It would not have taken any more time to just put that urine in a specimen tube instead of flushing it. Rayden stayed awake from 4am to about 9am. His fever (101) returned and he went off to sleep. He slept until 1:30. When he woke up his head and pillow were soaked. I guess he sweated the fever out. 

PT was coming at 2 to take him to the play room so I asked for the oxy and got him ready. As we were getting his AFO's on the doctor came in saying he planned to put Rayden on a round of antibiotics and wanted to see his incision. When we sat him up in the bed he could see the agony Rayden was in for the first time. He pointed out that there was puss on his scar and wanted the nurse to swab it when we returned from PT. Rayden was so scared to try to walk. He knows it is going to hurt and he just falls apart. We have to push him and that is heart-wrenching. While in the playroom he walked (with PT help) to the tool bench and stood playing it for a second. 

He quickly saw an air hockey table and wanted to play it so Michael turned it on. He walked all the way to the table and stood there playing with Daddy until his body started shaking all over. The PT sat him down on her leg for a break. He walked all the way around the playroom to get to the wheelchair and return to the room. When we returned Dr. Elton was waiting for us. He stopped the nurse from doing the swab. He said he didn't want anyone digging in his incisions, besides whatever was there would be treated with the antibiotics they were going to give him for the UTI. He mentioned there was a pocket underneath the incision and he thought he may need a plastic surgeon consult later. (He never mentioned that before now). 

As I sit here pondering about the pain he is in and I see how hard it is to walk again, I am second guessing myself. Every night for weeks I asked God to cancel this surgery if it was not the right choice!! Why did God think this was right? Why did I think this was right? Did we make the right decision to do this surgery? Should we have waited to see if his symptoms would get worse? Will he ever be able to walk like he did before? Have we made the wrong decision? What kind of mother allows their child to be put in such terrible pain and agony? I don't know how to fix this. I wish I could go back and not do this surgery. There is never an easy answer for things like this and we always try to do what's best for Rayden's future. It is just so hard to watch him go through these things and wonder if he would have been better off without it. 

January 21, 2021 (Day 7 in the hospital) I woke up this morning around 3am in all the feels. I'M JUST SO TIRED! I'm tired of watching my baby in pain and not being able to do anything about it. I'm tired of pushing him like a bad guy when he's going to hurt. I'm tired of being the bad guy and Michael is always the good guy. I'm tired of my baby being poked and prodded, twisted and pulled. I'm tired of having to be strong all the time and holding my fear and pain in so Rayden doesn't see me. I'm tired of these doctors pushing blame on each other. I'm tired of these diapers that are too small. I'm tired of not knowing what to do with no real answers. I'm tired of these four walls and wearing a mask 24 hours a day. I'm tired of this hard bed and no sleep. I'm tired of this hospital food. I'm tired of washing my clothes out in the sink!!! OK, I'm done with the pity party. 

This is getting worse by the minute. Last night Rayden's high fever returned even through the Tylenol. We had to give Motrin on top of the Tylenol. Around 3am the nurse came in to check his diaper and saw a puddle of blood about the size of a half dollar in the back of his diaper where it goes over his incision. She ran to page the neurosurgery team. The NS intern arrived about 5am and I could see on her face that this was not right. She left to tell Dr. Elton and came back about 7am with a swab to get a culture of it. She also said he wanted a sedated MRI with and without contrast. The only problem is they can't fit him in until about 3pm. 

The urine culture came back negative this morning and he is urinating some on his own. They did NOT need to cath him all day. Dr. Ross came in and explained that his kidneys and bladder may not function the same after spine surgery. She said it kind of goes into a shock mode and may take a few weeks to get back to normal, if they ever do at all. We may have to cath at home for a while. She wanted to reassure me that his kidneys and bladder were fine and that she wasn't worried about them. She mentioned doing another renal ultrasound and urodynamics study soon. 

We got Rayden up for PT around 11am. When we changed his diaper we noticed a TON of blood. I immediately called the nurse which in turn called Dr. Steven Papas (our 7th floor doctor). He came in and seemed very concerned with that much blood. He stayed to watch how bad Rayden did with getting out of bed and trying to walk. He is very concerned about his pain being under control. He even walked with us down the hall and allowed Rayden to run over his feet with his walker. He fell to the ground and Rayden laughed and laughed. It was so very good to see/hear his sweet laughter again. When we returned to the room he had just as much blood and drainage as before. The drainage continued throughout the day. 

They came to get him for his MRI around 3pm. We walked down with him, helped him get put to sleep, and then went to wash clothes by the PICU. Around 5pm I was called to post op to sit with him as he woke up. Shortly after we arrived back in his room on the 7th floor Dr. Steven Papas called to tell me the results from the MRI. He knew how important this was to us. He said the MRI revealed the spinal cord showed no signs of infection or re-tethering. That's great news but it doesn't give us a cause for the fever and the blood/drainage. The culture from the bleeding hasn't come back yet so it may show a skin infection of some kind. He said he would talk to his team about a plan of attack and see us in the morning. 

January 22, 2021 (Day 8 in the hospital) Rayden slept well last night after having anesthesia for the MRI. He woke this morning around 4am not really in the best of moods. He seems to be in pain. The NS came around 5am saying the culture showed bacteria but basically its just the kind that is always on your skin. It is still bleeding though. From my research I believe Rayden's drainage falls in one of these two categories, I'm leaning more toward bloody/sanguineous. 

-Serosanguinous Drainage- This thin, watery drainage is composed of both blood and serum and may appear slightly pink from the small number of red blood cells that are present. This discharge is normal in the early stages of healing, as the blood is present in small amounts. The serum can appear pink. 

-Bloody/Sanguineous Drainage-This is ABNORMAL wound drainage that typically has a larger amount of blood present than in serosanguinous drainage. This blood drainage is not typical of a healing wound. It may indicate that the wound hasn't been treated gently enough during incision care, the patient is being too active too quickly after surgery, or another type of stress is affecting the incision site. 

Dr. Elton came in this morning. He isn't worried about the drainage because he said Rayden had a pocket about the diameter and thickness of his hand under the skin. The blood pooled there and when Rayden started moving it just oozed out. He says we should see smaller and smaller amounts. He stated spinal cord surgery is like a shock to the system. That explains why Rayden is dragging his feet, complaining about his leg hurting, etc. He kind of has to start all over. He didn't expect all of this to happen to him, but it's just another example of how Rayden doesn't follow the text books. He expects us to remain in the hospital a few more days for pain control. 

Rayden hasn't had a fever all day (although he is till taking Tylenol around the clock) and he is voiding much, much better. I'm so thankful because the urologist said if his volume didn't increase she wanted to hook the IV back up. We took Rayden down for a renal ultrasound around 10:30 and didn't return for two hours. We ordered Rayden a Papa Johns Pizza and he ate 3 slices!! When Dr. Steven Papas heard this he asked if we wanted to begin oral antibiotics. That sounds like one more step to going home. He also reported that the renal ultrasound looked just fine.   

Michael and I took Rayden to the playroom around 3pm. He walked several different little sections to get there. Once we got there he stood up almost the entire 45 minutes playing with us. I supported him most of the time because falling is the LAST thing we need. The doctor came into the playroom to see how well he was doing and decided he could go home!! I was shocked but after 8 days was relieved to get out of here! We didn't get to leave until around 8pm because the pharmacy held us up with all that medicine. The car ride home was HORRIBLE!!!!!!! I can't even put it into words! I didn't have enough hands to rub all the places he was complaining about. He was in agony and nauseated. Luckily we had some oxy in the pharmacy bag so I gave him some. It kicked in quick but the pain just continued. I felt that if we could only get him home he would feel better. 

When we got home I unpacked his hospital supplies we we could change the dressing and go to bed. The little incision on the right had a bb sized hole opening. I gave him all the meds they sent home and noticed he also had a low grade fever. Rayden has never slept in my bed since we remodeled the house but Michael and I felt better with him being close so I could monitor him. We knew we would have to get up and go right back to the hospital. 

January 15-18, 2021 "Surgery #15-Tethered Cord Release and Recovery"

What is a tethered cord? 

A tethered cord is a spinal cord that is pulled down and stuck, or fixed, to the spinal canal. The spinal cord normally floats free inside the canal. If the spinal cord is stuck, it will stretch like a rubber band as a child grows. This can cause lasting damage to the spinal nerves. 

Untethering involves a delicate surgery to release the scar tissue around the spinal cord to restore spinal fluid flow and the motion of the spinal cord. Surgery usually leads to improved strength and reduced pain. However, it does not always bring back lost sensory function. 

January 15, 2021 (Day 1 in the hospital) left home at 4am! Rayden was a little confused as to why we picked him up out of bed and put him straight into the van. He asked a few times where we were going but when we never responded he actually stopped inquiring and went back to sleep. When I turned down Manning Road he woke up and said "Why are we in Chapel Hill? I don't want to be here." He is a very smart boy, extremely aware of his surroundings. He knew immediately what was going on but surprisingly did not get too upset. He just kept saying, "let's cancel this and leave." We didn't have to wait long this time because Rayden was the first case! We were actually finished with pre-op and headed to the operating room in the wagon by 7:30am. Rayden took his little toy, 'hunter man', with him for comfort. Dr. Elton met us in the consult room at 11:30am (4 hours later). He immediately said "This kid is strong!! He put up a fight! It took 5 adults to hold him down to put him to sleep!" He said the surgery went well. He cut the spinal cord free with very little bleeding. As soon as he cut it free it bounced back up perfectly. The challenge was actually NOT the tether, it was closing him back up. The skin over the dura was super thin. He said he had to close in different layers. He had to free up the fascia so he suspects Rayden will be sore from that. The skin was pretty thin in the middle part of his old scar badly. The left side was thick but the right side was paper thin and needed a repair. He said you could actually see through it! He suspected it wouldn't allow for good blood flow the way it was. So now Rayden has a main incision and then a tiny incision on the right side. The potential for spinal fluid leak is bad so Rayden has to lay in bed for three days to protect the incision and allow it to close up well. He has to keep his head in line with his hips (no pillow). If he sits up Dr. Elton said he would have "the mother of all headaches!" He will take the dressing off at the end of three days to check the incision. He also has a catheter so we won't have to pull on him to change his diapers for a while. 

He placed Rayden in ICU for a 6-8 hours to get ahead of the pain and assured me that both parents could stay with him the entire time. We joined him around 12:30pm. I was so relieved to see him. He continued to sleep but woke up just a tiny bit to tell us there was a "whole in his back". He actually said he was in pain! He refused to move his legs at all. They tried to give him oral oxycodone but he wouldn't take it and got so worked up that the doctor decided to give him morphine in his IV. He drifted back to sleep but was soon complaining about "a pounding in his head" and his arm hurting really bad. The nurse decided his arm must be asleep so we rotated him to the other side. He screamed in agony but it was over quick. By 3:30pm he was awake pretty good talking and asking for chicken nuggets and french fries. So Michael went straight to the cafe and got it for him. I broke it into tiny, little pieces and fed him one piece at a time hoping he didn't choke. Eating laying down is pretty difficult, but he took a few bites and drifted back to sleep. He continued to drift in and out throughout the rest of the afternoon because of the pain medication. He spiked a fever around 8:30pm so they decided NOT to move him out of the ICU. He woke up throughout the night wailing in pain saying "My back!" It is so heart wrenching when you can't do anything to take the pain away. They allowed Michael and I both to stay with him throughout the night although we had to 'sleep' in straight back chairs. (Not our first time.) 

January 16, 2021 (Day 2 in the hospital) Rayden slept pretty good although the nurse woke him every couple of hours assessing him and giving medication. She was really diligent. He is on IV tylenol, IV morphine, IV antibiotic, oral oxycodone, oral senna, and his oral seizure medication. He will not move a muscle and does not want anyone touching him. We have to move him every couple of hours though to prevent bed sores. He screams in agony. He has started jumping even in his sleep and I'm wondering if he is having muscle spasms. Around 11:00am the docs decided to give him more morphine because he is tachycardic (heart racing on the monitor over 145), he is clammy and will not move a finger or drink anything. He doesn't want anyone touching him. He doesn't even want to hold my hand or his hunter man!!! They unhooked the IV in hopes that he will begin to eat and drink on his own. He sleeps most of the time. They backed off the pain meds in hopes to wake him more. I'm beginning to get very, very worried about him. We can't keep him drugged up, these narcotics will block his bowels, but he cannot stand this horrible pain! Lord, please intervene. 

Around 3:30pm they finally moved Rayden to a regular room. We ordered him pepperoni pizza, french fries and orange gatorade (his favorites) but he would not eat one single bite!!!! We ended up giving him oxycodone around midnight so he could rest. I had to force him to eat one graham cracker just so it wouldn't make him sick.  

January 17, 2021 (Day 3 in the hospital) Rayden slept pretty good after we gave him the oxycodone. The machine continuously beeped throughout the night because his respirations kept dropping below 12! Normal respirations for him would be 18-20 breaths per minute. He woke up around 5:30am talking and asking when we could go home. He was in pain, but not too bad until the nurse and I rotated him at 6am. The doctor came in this morning and said his heart rate was pretty high even during his sleep. She says his heart rate should be below 120 and it was in the 150s overnight. She wanted to hook the IV back up and give him fluids but Rayden was actually eating a little. He didn't eat much but it was enough for her to back off for now. The nurse took one of the IVs out of his arm leaving the other one just in case. He stayed awake the majority of the day talking to us, watching his ipad and even asked for hunter man. We even got a chuckle when two of his doctors did knock-knock jokes and magic tricks for him. He ate a good lunch and a tiny bit of supper. He did not need any pain meds other than Tylenol the entire day! The only time he really complained all day was when we rotated him. His heart rate went down to 105 later in the evening so that proved he was much better. His doctors were very pleased and optimistic about being able to start Physical Therapy, Occupational Therapy, and take out the catheter tomorrow. 

January 18, 2021 (Day 4 in the hospital) I'm very glad Rayden slept all night because I know this is going to be a rough, busy day for him. He only drank his milk for breakfast. He kept saying his belly was full. He hasn't had his peristeen enema system in three days so I'm sure he IS FULL. We've been giving him Senna and Miralax daily but to get it really moving I asked for some prune juice and miralax. This normally works at home. Around 8:30am the neurosurgeon working with Dr. Elton removed the dressing/bandage over the incision. Oh my goodness, that was so painful for him! Even though it hurt so bad, Rayden kept saying "just take it off!" He drank the prune juice around 9:30am and explosions happened around 11am. He was so scared as four of us tried to clean him up. Unfortunately the mud flap was not placed correctly and some got on his incision. We washed it with soap and water. We ended up having to remove the catheter a little early because more explosions happened. 

Soon he was feeling so much better, laughing at his mohawk hair, and eating a hot dog (one of his favorites). The nurse gave him a little bit of oxycodone before the PT and OT came at 1pm because she knew it was going to be painful. The therapists came with a plan to sit him up and walk to a tiny wheelchair to sit down. She even brought a walker if he wanted to take a stroll. Well, none of that happened. She helped me pull his pants over his incision by rolling back and forth. Then Rayden had to pull on one therapists arm to sit up while the other therapist moved his legs off the side of the bed. 

As he sat there he began to shiver and his eyes looked glassy. He started crying that his leg was hurting and he was dizzy. He tried soooo hard to be brave and strong. They said it might take a minute for his blood pressure to regulate since he's been lying flat for three full days. They tried to pin point the pain but I believe if he sat up much longer he was going to pass out. They lowered him back onto the bed and calmed him down. They raised the head of the bed and he seemed to handle that pretty well. So they tried working on his leg mobility. He handled that pretty good so that is now our assignment for the evening. He has to sit up in bed while mom and dad help him move his legs up and inward 10 reps each. 

Sitting up in bed seemed to make him feel much better as time went by. He even asked for gatorade and Doritos. He started playing with the toolbox and his new jeep they brought him. Michael and I decided to brush his teeth and give him a little sponge bath. I know this made him feel better. We soon got another scare when the nurse came back to see if he had urinated. Even though he drunk an entire 12 oz of gatorade he had not voided in several hours. She said if he doesn't within 6 hours of taking out the catheter she would have to do an ultrasound to look for problems. She brought two little heating pads to place on his kidneys in hopes it would make him pee. 

With no luck an hour later, she came in with the bladder ultrasound. It revealed that his bladder volume was at 191. A child his age should only hold a volume of around 210, so it was pretty full. The nurses changed shifts around this time and Rayden was so very upset to see Alissa leave. He cried and hugged her so lovingly. The new nurse gave him another hour with more heating pads but his bladder was clearly still asleep. A second scan revealed that his bladder was indeed full. At this point she decided to cath him to empty his bladder. We are hoping this will wake up his bladder so it will start working again on its own. He fell asleep within ten minutes of her leaving. WHAT A DAY!!!

December 26, 2020 "Christmas Break"

Mom and Rayden created a gingerbread house. 

Rayden got a truck with a dump bed. 

Twinning brothers. 

It actually snowed a little on Christmas Day.


 

December 2, 2020 "Spine MRI"

Symptoms that made us call neurosurgery. 
1-Rayden has been falling a lot in the past few months. He is using his walker all the time at school. His PT even noticed his increasing weakness. 

2-Even though we have been using the peristeen for bowel clean outs nightly for the past 3 1/2 years, it's not working anymore. 

3-His toes are curling and his legs are turning inward more causing little blisters on his ankles. 

4-He is complaining of pain in his legs and sometimes 'tickling'. This complaining has increased. 

5-He screams that I am hurting him when I touch his feet. 

6-He started to walk one morning and his knees buckled with every step. He was beyond weak that entire day. His legs even pointed outward prompting him to ask what was wrong himself! 

MRI-December 2, 2020

We left at 8:30am because Rayden's appointment was scheduled for 10:30. Of course he hadn't eaten anything since 6pm the night before. As we sat in the hall away from everyone else, Rayden couldn't help but notice all the people going by with their lunch. We tried to keep him distracted by playing with a few toys from his bag and looking at pictures and videos on our phones. After two hours we were all getting a little antsy. They finally called Rayden back around 1:00! Even though the hospital recorded in his chart that he had a bad reaction to propofol after being on the ventilator from his seizure, the anesthesiologists disagreed. Because he had propofol before surgery in the past with no reaction, they thought it was a combination of all the medicine given in the ER and the seizures, not the propofol. At 1:45 they finally gave him versed to calm his nerves. 

He actually started asking to ride in the wagon so they wheeled him down to MRI at 2:00. He didn't seem to mind when they placed him on the table. One of the doctors even gave him his phone playing Blippi. But when they came toward him with the gas mask he started screaming and crying. I guess the versed didn't work as good as we wanted. It didn't take a minute and he was out. They informed us that it would only take about 45 min to do the scan and he would be back upstairs in post-op. Michael and I waited and waited out in the hallway. I went to the desk and reminded them that he was suppose to see the neurosurgeon to reset his shunt before they leave. THREE hours later they finally called me to go in there. Melody, from neurosurgery, was in there already. She informed me that his scans were not uploaded yet so they would call me tomorrow with their findings. 

Rayden finally started coming around but his speech was slurred. That worried me so much because it reminded me of his seizures. Needless to say, we didn't leave until 7:00pm. We ended up eating a convenient store hot dog and Doritos in the van on the way home (what a great dinner)! 

What is a tethered spinal cord?

A tethered cord is a spinal cord that is pulled down and stuck, or fixed, to the spinal canal. The spinal cord normally floats free inside the spinal canal. If the spinal cord is stuck, it will stretch like a rubber band as a child grows. This can lead to possible nerve damage, pain and other symptoms. In most cases, the condition becomes worse over time. 

Tethering at S1

Results-December 3, 2020-Melody called with the results from Rayden's MRI. She stated that Dr. Elton and his associate saw that Rayden's spinal cord was indeed tethered at the S1 level. This explains all the symptoms we are seeing. They also saw a 'wispy' area higher up in his spine. Dr. Elton called it a 'dilated central canal'. The radiologist identified it as syringomyelia at the C5-L1 levels measuring up to 3mm in transaxial dimension. He believes it is fluid in the central canal related to pressure or tension on the cord. He thinks that once he releases the tether at the bottom which is causing all the tension and pressure, the fluid will dissipate. They plan to do a follow up MRI a few months after surgery to verify if this happened. Surgery is scheduled for January 15.

Dilated Central Canal from C5-L1. 
This picture just shows a little of it. 

December 23, 2014

We have been seeing more good days than bad so I scheduled a tele-visit with Dr. Elton this morning. He said this is normal with tethered cord. He explained that if we wanted to wait and watch a while he understood but he would consider Rayden a 'more urgent' case and would like to get this corrected sooner rather than later. He says that the surgery can resolve pain but once the weakness and loss of function happens those things are gone forever. He explained that he expects Rayden's surgery to last anywhere from 2-4 hours but he really won't know until he gets in there. He expects Rayden to be in ICU overnight then moved to a regular floor for 3-6 days. He will need to lie flat for 2-3 days to prevent any CSF leaking through the incision. He is at moderate risk for this happening and if it does he will need to go back into surgery to close it up. Once home he would have 2-4 weeks with minimal activity before being released to normal activity. 

November 12, 2020 "Urodynamics Study"

A urodynamics study is a procedure that looks at how well the bladder, sphincters, and urethra are storing and releasing urine. It focusses on the bladder's ability to hold urine and empty steadily and completely. It can also show whether the bladder is having involuntary contractions that cause urine leakage.  

Rayden has had a couple of these tests in the past but his last one was at 2 1/2 yrs old (2017). Now he is more aware of what is going on so I knew this wouldn't go so well. Daddy came along to help keep him calm. We even brought Rayden's favorite toy, fisher man, for comfort. The procedure is such a terrible process. They place little sticky monitors all over your bottom and lower belly. They place two catheters into the bladder. One is to fill up the bladder with blue liquid and the other to measure the pressure in the bladder. They place another catheter in the back passage which allows the pressure inside the bladder to be compared with the pressure outside the bladder. I was already sweating bullets in the led vest but then I got really concerned because the technician was having trouble getting the catheter to pass through the sphincter. He asked the other person to go get Dr. Ross but as soon as he left it passed through. Once the catheters are in the correct position, fluid runs into the bladder at a controlled rate. During this time the technician is collecting data on the computer, taking pictures with the x-ray machine and looking for leaks. Rayden was a trooper although he grasped that fisher man with all his might and continuously said "that hurts" when the technician went down there, even though he wasn't touching him. 

Results: Upside--His kidneys and bladder pressures are good. His bladder actually held a ton more liquid than the doctor even expected. 

Downside--Although the bladder is healthy and can hold lots of liquid, it doesn't squeeze it all out at one time. His sphincter muscle, which is suppose to be tight and hold in your urine, is weak so he can't hold a full bladder from leaking. He actually began leaking at only 46cc, which is only an 8th of his bladder capacity! Catheterizing will take out all the urine but as the bladder begins to fill back up, the sphincter will continuously allow it to leak. Therefore he would not be dry between catheterizing even if we did it every 20 minutes. Dr. Ross says we have three choices: 1-continue in diapers, 2-bladder neck sling/mitrofanoff and mace surgery, or 3-when he turns 18 he could have surgery for an artificial urinary sphincter but they don't have this for children. She also mentioned that although the pressure on his bladder is safe, it may not be good enough for the surgery needed to make him continent of urine. Therefore she believes he may need a bladder augmentation where they make the bladder bigger. It can be rather dangerous because of the long term effects. Therefore she would recommend the bladder neck sling and mitrofanoff surgery for now and hold off on the bladder augmentation. She mentioned we may need to do that later down the line if it doesn't work. But Rayden has to be mentally ready for all of this. He would have three tubes sticking out of his belly for six weeks and then he would have to place tubes in those holes to flush his kidneys and bowel for the rest of his life. 

Because his kidneys and bladder are safe and functioning so well, Dr. Ross doesn't really recommend the surgery right now. It would be more about lifestyle for him, not life threatening. There are so many complications that aren't really worth the trouble since he's doing so well in diapers. Michael and I agreed. These surgeries are a little too invasive for us right now. Maybe in the future when HE is ready to do this to his body. 

Although he can't use the bathroom like other people, it certainly doesn't make him any LESS of a person. He is God's masterpiece. He is fearfully and wonderfully made and we love him just the perfect way he is!!

October 24, 2020 "Rayden's 6th Miracle Day party"

  

Due to Covid, I didn't think we would be able to have a celebration this year. Michael and I decided to have a super small get together. We had it outside and all the food and drinks were individual servings. Even though it was small, Rayden had a LARGE time. The weather was magnificent and his best friends came to play. Rayden, Maylen, Harrison, and Ava Troy had a ball riding his truck and tractor, playing in the sandbox, and play house. 

Rayden knew exactly what he wanted at this party. He wanted a construction theme with a piñata and real construction trucks to play on. Even though we didn't get the real construction trucks, the piñata was a hit!  

October 19, 2020 "Jack-O-Lantern"

Rayden was super excited to pick out a pumpkin. He had a hard time choosing so we ended up getting four! He wanted to carve one right away. We finally carved our Jack-O-Lantern on Oct. 19 and the pure amazement in his eyes makes life worth living. Rayden gets so much enjoyment out of every thing he does. We cherish all these 'firsts' with him.  

October 1, 2020 "Second seizure episode"

We believe Rayden had his second seizure today. It wasn't as clear cut as his first episode which is why I say "we believe". I'm also beyond THRILLED that this wasn't at all like his first seizure/s. 

Rayden was in the library with Mr. Graham when he noticed that Rayden seemed extra sleepy. He put his head down on the table and Mr. Graham got worried. He asked Mrs. Charlotte, who was also in the library, if he seemed extra tired when she was working with him earlier. She didn't think so. He asked Mrs. Raines, who happened to be walking by, the same question. She also said no, and came to assess Rayden. She came in my classroom shortly after and asked me to go check on Rayden because his eyes seemed glassy and he was extremely sleepy. When I got to the library Rayden was full blown asleep with his head on the table. I tried to wake him and he began to moan and groan this weird howl. When he looked at me his eyes were glassy and red. When I tried to stand him up to come sit with me he fell to the floor with no strength at all. He curled up on the floor moaning. I agreed something was wrong, but since he didn't seem to be in a seizure like before I didn't think I needed to give him the rescue medicine. I honestly didn't know what to do. This, of course, didn't make Mr. Graham feel any better! I was suppose to KNOW what to do. I asked him if he felt comfortable with Rayden laying there on the bean bag until I took my class to PE. He agreed but before I could get my class lined up Mrs. Charlotte came rushing in and said "go now!" I ran back to find Rayden sitting in Mrs. Raines' lap holding his forehead screaming "my head!" I knew then that I needed to just take him home and call the doctor. She helped me gather my things and I carried Rayden down the hall. He was screaming and moaning so loudly that teachers just closed their doors as we passed by. Rayden was asleep in the van before I got out of the parking lot. By the time Michael got home I had already talked to Dr. Mary Ann Chiodo. She believed he had another seizure but wanted me to call his neurologist to see if she may want to up his medication. I couldn't get in touch with his neurologist so I called the hospital and paged the Pediatric Neurologist on call. When she called me back we discussed the events of today as well as his history of SB and his first seizure episode. She asked me to wake Rayden up so she could assess him over the phone. As soon as Rayden sat up he began to scream "My head!" holding his forehead again. Then he would lie back down. I offered him some cake and he seemed to want it. He got off the sofa and walked to the table but as soon as he got there he grabbed his head and said "I don't want it." and went back to lie down. The doctor then spoke with her attending and they agreed we needed to take Rayden to Betsy Johnson to get a CT scan to rule out shunt malfunction. After about thirty minutes of discussing this, Rayden sat up as if nothing was wrong and asked Daddy if he could go outside. Apparently he had slept it off. A couple days later, his neurologist called me back. She determined that the medication they had him on must be working or the episode would have been worse. She didn't want to up his dosage just yet. She wanted to give it more time to get deep into his system.