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.