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!!