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.