January 27-31, 2021 "Trying to recover"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

January 23-26, 2021 "Surgical wound infection and Surgery #15"

 

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 #14-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!!!