2022

Has anything ever happened in your life that completely stopped you in your tracks?

For me, that was “the accident”

You think you are ready for anything. Maybe you even joke about it “if there was an accident, we’d be ok. We’d just…” but then that accident happens and literally brings you to your knees.

7/18/2021

“My family was in a car accident last night. My three oldest children and my in-laws. My mother in law did not make it. My father in law is in the hospital, several broken bones. In need of surgery at a later date for hands. Not critical, but still serious. Bryce’s trachea was severed in the accident and he was without oxygen/poorly oxygenating for a long time. Other than his airway (which is obviously life threatening) all of his scans and blood work look good. After several surgeries to stabilize him, and establish an airway, Bryce was airlifted to UNC early this morning. They made it safely and got him transferred over, and his team says he looks “much better than expected given his injuries.” At this time, they have no plans of further reparative surgery. New Hanover repaired his airway as best as they could, and he is intubated. He will likely be intubated for several weeks. He has chest tubes, received multiple units of blood, fluids, plasma, etc.Thursday they plan to send him into the OR to look and see how his trachea is healing. But nothing is scheduled to happen before then. His lungs seem to be constantly improving, but it is still a very tenuous situation. Fluid in his lungs, pulmonary edema, the risk of acute respiratory distress is still high. If anything goes wrong or deteriorates they will not go in Thursday, but that is the earliest date where anything is “scheduled to happen” James and Ryleigh are both doing well. Sore, but have been released from the hospital.”

7/19/2021

There is not much to update. Bryce’s team is continually amazed at how good he looks. We are so very appreciative for all of the prayers and support that we have received. We ask for specific prayer in the following areas…Bryce is being heavily sedated in order to keep him calm and still. His airway, while it is secured, is very fragile and movement can cause serious consequences. He has been breaking though the sedation and attempting to breathe over the ventilator. Which feels like a good thing that his body is trying to wake up and work, but for the sake of long term outcomes is not good. They have increased his dose of sedation, but that can only work so many times before they have to change medications/strategies for keeping him still and calm, and that is not ideal. He needs to be still. Please pray that he would relax and his body would accept the sedation. My father in law is in surgery for his hand. They intended to also operate on his shoulder, but that is not possible at this time. He will have to go back in at a later date for that operation.

7/20/2020

Here is where we are today. The bottom lobe of his right lung is still collapsed. They are trying to get the team to come do a broncoscopy today to go in and remove any plugs to try to open it up. They want his situation “optimized” for his operation Thursday. -They are giving him all of his fluids and nutrition via IV. Which means he has to have a central line. Saturday they had to place a femoral arterial line due to the emergent nature of the situation, however there is a high risk of infection with that groin location. They were able to come last night and move his line into his wrist. -With all of the fluids that are giving him and the sedation, his body was holding fluid. Yesterday he was up about 3L. They gave him a dose of lasiks last night to help pull some of the extra fluid off that he had been holding onto. He peed quite a bit, and they said his kidney function looks great. -He is currently still in the hard c-spine collar to hold his neck still, he is going for an MRI hopefully some time today to clear his c-spine so they can take his collar off, which will make surgery on Thursday easier and hopefully more successful. -Thank you for all of your prayers for peace, while Bryce is still “responding” to you when you talk to him, he is no longer agitated/struggling to breathe over the ventilator. You can tell he hears you because of his vital signs, his heart rate increases, as does his blood pressure. But again, he is much more peaceful. Update on Ricky:Surgery on his hand yesterday went extremely well. The doctors said everything lined up perfectly. Today his demeanor is much improved. They were not able to operate on his shoulder as they hoped, but that surgery will come in the next few weeks. Thank you to everyone who worked on finding housing for us. We have arrangements made that will acccomodate our family for the next three weeks. Lots of people have asked what they can do to help. Amber Walton Krause is arranging a schedule to take care of the farm while we are gone. If you feel like feeding the inside animals (dog, cat, guinea pigs) or the outside animals (chickens, pigs, goats, ducks) please reach out to her and she can let you know what we need!

7/21/2021

I am a little muddy this morning on exactly how to update you all. The broncoscopy yesterday went well. He tolerated the procedure well, and they were able to pull a lot of mucous out, several large plugs. They sent it to pathology and at this time there is no bacterial growth (which is good because that means a lower risk of pneumonia). His morning X-ray showed a little improvement on his right lung. But his left lung looks like it is down a little bit from previously. He was scheduled for his MRI this morning. However, he has had some instability in his oxygen saturation. He dropped briefly into the 80’s and is back up into the low 90’s. They are holding off on the MRI until his oxygenation is stable. Right now, we are looking at fine tuning the ventilator settings. Orriginally he had what they call a cuffless tube. This morning due to his oxygenation and lung pressures, they inflated his cuff, meaning there is a tube going from the ventilator down into his lungs and this morning they inflated a small balloon (cuff) in his trachea to keep any air from leaking back out of his mouth, and keep the pressure in his lungs. The surgery is still scheduled for tomorrow. Orriginally they thought both the ENT and GI doctors would be going in to look, however, they have taken the GI doc. Off of the schedule, as the process of checking for GI leaks could cause issues with his airway, and at this point, it’s not worth the risk. Prayers are very much appreciated that he will stabilize and will still be good for the MRI this afternoon and surgery tomorrow. My father in law is continuing to improve. They are now in the planning stage for discharge into a rehab facility. So prayers for bed availability and continued improvement

7/21/2021

The results of the MRI were not good. -Evidence of Multiple strokes in both his cerebral and occipital lobes. -C4-t3 vertebrae fractured(except c6) -Swollen spinal cord. Since this is day 4 the doctor assumes that any nerve damage that would be done by this swelling is already done. -They are stopping his paralytic to see if he is capable of movement in hands and feet. It may take up to 24hours to see any flickers of movement since he was on such a high dose of the paralytic.

7/22/2021

Yesterday post morning MRI, the doctors decided to stop Bryce’s paralytic to assess potential deficits from the spinal cord swelling. I am very happy to say that he was off of the paralytic for several hours and we were able to see him wiggle his fingers and toes, and open his eyes. Which is a great sign, as there was concern about anything from loss of sensation to paralysis. We saw both movement and response to stimuli. We will not know if he has deficits from the strokes until he is awake and communicating. They did a repeat MRI last night, and preliminary results show no additional strokes from yesterday morning. They were concerned about the possibility of more, so one of the things they were looking for was clotting in the veins/arteries in his neck surrounding his injury. There was no evidence of clot. So while they do not know exactly why he had the strokes, they are not actively concerned that he will have more.The third concern from the MRI is the fractures in his cervical spine. There are a few options on the table, 1. Spinal fusion. 2. Metal rods. 3. A Halo device (a type of semi-permanent fixation for the head/neck) I was not able to speak with the doctor about that, we are waiting for the neuro doctor to come by to discuss options/time lines. Also, he was supposed to go for his procedure today to see how his trachea is healing, but with all of the developments that has been tabled for now. They said it will likely not happen until sometime next week. He is still intubated and sedated. And they have him back on the paralytic for his safety. Physical therapy saw him for the first time today. Stretched his feet and legs. He is now wearing a boot, on one foot, to flex his foot to avoid any foot drop, and a SCD (to squeeze his calf muscle to help prevent blood clots) on the other leg, alternating every few hours. Thank you all for your continued prayers. For now it seems we are back in a bit of a holding pattern. My father in law is continuing to improve. They are hopeful he will be in a short term rehab over the next day or two.

7/23/2021

Bryce had a pretty good night. An episode or two of decreased oxygen saturation, but they adjusted his vent settings and he is stable. The neurologist made a decision about his brace. For the time being he is in what is called a Minerva brace, it stabilizes his head, neck and thoracic spine. He will be in this brace for a minimum of 3 months.Clarification about his neck injuries… his “fractures” while technically are fractures, the reason they did not show up on the original CT is because they are crushed, not what you would usually think as a “break/fracture.” Which, sounds like bad news, but is actually good news because she said those kinds of fractures are more likely to heal. Also, the ligaments associated with his fractured vertebrae are “disrupted” meaning they are torn, but not completely. The hope is that they will heal as well while he is in the brace. She seemed hopeful that at least a portion of his injuries could heal with out surgical intervention, but I got the feeling (even though she did not out right say it) that he will have to have surgical repair (most likely fusion) of some portion of his neck/thoracic region. PT is seeing him, making sure they are stretching him and maintaining his range of motion in his hands/feet/legs. His chest x-rays are looking better, both lungs are more inflated than they were. One chest tube has stopped putting out, the other is still draining enough fluid from his chest that they are not considering removal any time soon. It is still hard to see my boy. It “sounds like” he is doing well. And I’m sure you feel as I do, that when we get good news that you can take a sigh of relief. But then I look at him, and am reminded just how bad off he still is. He is stable, but still very fragile and critical.

7/24/2021

Saturday update. It has been a week. He is still intubated, and sedated, IV nutrition. My mom and brother and I were able to run down to Wilmington and pick up the rest of the kids and bring them back with us. Last night they turned his paralytic off and were able to keep it off for about 10 hours. They had to put him in soft wrist restraints because he started to try to pull out tubes. So the restraints allow him to move his hands but not reach and tubes. Ideally the neuro team wants his paralytic to be off and remain off in order to keep a closer eye on his neurological status. He has responded to sensation, voices, and commands. But they want to be aware of any changes. The main goal is safety. Because he is still intubated, even though he is highly sedated, if he gets too agitated and starts moving too much without the paralytic, he will have to go back on. Right now, he is not tolerating being turned from side to side (which is important for preventing skin breakdown, moving fluid that may still be in his chest/lungs, and preventing blood clots). The past several times they have attempted to turn him his oxygen and heart rate have both dropped. The plan as of now is to do the procedure previously planned for Thursday on Tuesday. So we are praying that he is stable enough for that, and we do not experience any more setbacks that would stop him from going to the OR. Some of you have heard, but most probably have not. Tuesday afternoon my father was sleeping in his recliner at home and his hip was dislocated. This has happened before, but this time the doctors were unable to get it back into place and insisted on doing a full hip replacement. He had a hip replacement in 1998, and the doctors knew eventually this would happen because “replacement parts only last so long.” Surgery was on Thursday, and he is doing well, and will go to rehab on Monday.

7/25/2021

All good news this morning. Lungs are more stable. His oxygen has dropped a few times, but with suctioning and adjusting the ventilator he comes right back up. They have kept him off of the paralytic medication. He has been off for about 24 hours. They had to add an additional sedating medication to help keep him calm in stressful times (like repositioning and procedures). But they really want him able to move, even just the little hand, feet, and facial movements help him maintain muscle elasticity. He has not had a bowel movement since the accident, and in order for them to start feeding him into his stomach instead of through his IV he has to move his bowels. They have started him on laxatives trying to stimulate him. But they will most likely be doing an enema today to get things moving. My father in law was returned to the hospital last night from the rehab with air in his belly, so far they think there is nothing serious causing bowel issues, but that his gut was simply not working normally due to pain medications and the anesthesia from surgery.

7/26/2021

Still receiving good news. Bryce did good over night. They tried to take his catheter out, but he was unable to pee on his own, so they had to put it back in. He is still on daily lasiks, and his output is good. Most of the swelling he had when we first got here is gone. He had a bowel movement finally over night! Which means they were able to start him on “trickle feeds” he is getting a very small amount of tube feed through his OG tube (from mouth to stomach). So far he is tolerating it well. They will not increase the amount he is getting until after surgery. Surgery is scheduled for tomorrow. They will be taking him down to the OR to look inside and see how his trachea is healing. Because of his spinal injury, the have decided to go ahead and give him a tracheostomy. Once he is back from surgery and settled in his room, they plan to start weaning him off of the sedation. Because he has been on opioids as part of his sedation regimen for over a week, they will be starting him on methadone to facilitate the weaning process. With a tracheostomy, he will hopefully be able to talk, which will make communication much easier and less frustrating. He will also eventually be able to eat normally with it in place. While we are hoping the tracheostomy is temporary, he will likely be going home with it (whenever “going home” happens).Hopefully we he will also be able to be weaned off of the ventilator. He is requiring “less support” from the ventilator. He is initiating breaths, and is able to cough to assist the respiratory therapist when she needs to suction him. The neurologist did clear his lower spine when she visited this morning. Which means that instead of keeping him totally flat and tilting his bed, and log rolling him (turning his body as if he were a log) he is able to have the head of his bed elevated so he bends at the waist. I will update when I have a better idea of what time surgery will be tomorrow. Hopefully it is early, but we don’t know yet.

7/27/2021

We are out of surgery! He now has his trach! The surgeon said he did wonderfully and he is really pleased with how everything is healing inside his trachea. His injury site is healing really well. There is some narrowing inside of his trachea from scarring, but we are not at a point to address that yet. Now that we are trached, they will be weaning him off of the sedation. He has been on for 8 days, so we are weaning slowly to avoid any withdrawals. There is a possibility that there is nerve damage to his vocal cords, which would mean possible trouble breathing/speaking. But we will not know about that until he is off of the sedation. They changed his feeding tube. The new one is an ND tube, which goes from his nose, all the way duodenum (past the stomach) which is a lower risk of aspiration than if it went into his stomach. The plan is over the next few days to slowly increase his tube feeds. We are back to waiting and watching, but with a secured/safe airway, we are in a much better place than we have been!

I wanted to take a minute to thank everyone who has been praying for Bryce. His team is amazed day after day at how amazing he is doing. They told us when we got here that he would be intubated and sedated for at least 3 weeks. Today was day 10, and he has a safe airway, and is being weaned from sedation. That would absolutely not be possible without the amazing power of God working in his body. I know we have a long road ahead of us. Weeks more in the hospital, and rehab after that. But he is making amazing strides. And I am sure every team that works with him from now till he is completely healed will be amazed again and again at the miracles being performed daily in his body

7/28/2021

Bryce is doing well this morning. But even though medically, he is doing well it is hard to give a positive update. He is more awake today than he has been at any point so far. Communication is hard. There is a balloon around his trach in order to keep air from leaking out of his lungs since he still needs support from the ventilator. Which means no air can come up through his vocal cords. So even though the tube is out and he is trying to mouth things, he is difficult to understand. And the more you try, the more flustered and panicked he gets. Last night they gave him a rattle (baby rattle) to hold so he could shake it when he needed Derrick or the nurse since he can not call out for help when he needs it. This morning he had dropped his rattle and was in a full blown panic attack by the time we figured out what he needed. He is thirsty, but will not have a swallow evaluation until he is off of the ventilator and has had his first trach change, which will be 5-7 days. When I told him he could only have 2 mouth swabs an hour, he cried because he is so thirsty (even though he is getting IV fluids). The brace he is wearing for his spinal injury is not fully supporting him the way he needs. So at some point today the orthotic team will come and evaluate him for a custom brace that more fully meets his needs. He has been started back on his tube feedings. Today just “trickle feeds” but tomorrow they hope to increase his feeds. But threw up after getting some medications through his tube…He keeps spiking fevers. We do not know why. Blood cultures are negative, as are urine cultures. They are not totally unexpected, with the healing process post procedure. But still being watched.

7/29/2021

The lord is still good to us. Bryce had an excellent night. Not so much on the sleep front… he kept Derrick up from 1am on. But from a medical stand point he did great. He is experiencing a bit of delirium. He has his nights and days mixed up, and when he wakes up, a lot of times can not remember where he is. He thinks he is home, or in Walmart. He has woken up kicking his legs in panic because he thinks he is paralyzed (not surprising since they had medically paralyzed him for a week, and he was “awake” underneath of the sedation and paralytic). Yesterday they started him on pressure trials with the ventilator. Meaning they had him on basically a CPAP setting. He was doing all of the work of breathing, but the machine was helping him maintain pressure in his lungs. Today, they have him on a trach collar. Meaning they are testing him without the ventilator, and just doing blow by oxygen in front of his trach. The Minerva brace is not supporting him like the neurologist really wants it to, so the orthotics team came by and took measurements, and did a 3D scan of his body so they can make him a custom brace. They rolled him around, cleaning him up, doing the scan, etc. and his oxygenation stayed above 95% on the trach collar which is a huge accomplishment. He is continuing to be weaned off of his sedation. They are watching him for signs of withdrawal, but so far is doing great.They are still trying to see if he can handle medications down his feeding tube. So far he has thrown up almost every time they have given him medications that way. But he is tolerating his feeds, and the plan is to increase his tube feed rate starting today. They are planning to take one of his chest tubes out today, and hopefully the other will be out tomorrow. They really want the chest tubes out before his new brace is put on, other wise they will have to drill holes in the brace to accommodate the chest tube. They are doing their best to keep him from getting any pressure injuries while in the bed. But he does have a small pressure injury on the back of his head. It is hard because while they are “turning him” it is mostly just his hips and lower body that get turned, and his head stays flat on the bed because of the brace. Hopefully tomorrow when he is in his new brace, that will change. For now, they have added a little extra padding for the back of his head.

7/30/2021

Today we made so much progress. But it was a horrific day. This morning they added a new respiratory medication to thin his secretions. With the thinner secretions he was coughing and needing suctioning every 5-7 minutes. Because he was coughing so much and so vigorously, his feeding tube had to be reinserted. And an X-ray taken to ensure it made it back into the correct place. His chest tubes have been removed (right and left). He was so worked up from the coughing and the NG tube the nurse had to give him a little extra sedation to make it through the removal process. After his chest tubes were removed, the ENT doctors came and scoped through his nose to view his vocal cords. The bad news is that his vocal cords are not moving. Which means either nerve bruising or nerve damage. If they are bruised, the doctor anticipates healing will take 3-4 months. If they are damaged, and are able to heal themselves, we are looking at 6months to a year for healing. What this means for Bryce is that the tracheostomy may not be as temporary as we had hoped. The neurologist ordered a new brace for him, as he was still able to move his head too much in the Minerva brace. He was fitted for his new brace today. It is much more brace than he had before and was really quite traumatic the first time we took it on/off. And unfortunately it did not fit perfectly the first time, we had to take it off and have it adjusted. I won’t describe the time he had, but it was very traumatic. While the adjustments were being made, speech therapy came to evaluate him. He passed a preliminary swallow evaluation, and was able to drink a few sips of water, he ate two ice chips and 5 bites of jello! He was also tested on a passimear valve which fits over his trach and allows him to speak. He only tolerates the valve for a few words before it causes him to cough, but he will build up tolerance and be able to speak more and more. Since speech does not come on the weekends, we were given permission to give him small amounts of ice chips and water, one sip at a time. We are also allowed to try the valve for “a minute here and there.” Because adjustments had to be made, and we had to take off the Minerva brace and replace the new customer brace, the nurse gave him another bolus of sedating medication, and we were able to get him tucked in for the night in his new brace with out any issues. Other than the obvious physical healing that he needs, he needs mental/emotional healing. He has not tolerated medications through his feeding tube. They make him very nauseous, and he has vomited them up multiple times. Which has now caused him to be incredibly fearful whenever the nurses go to give him even small doses of medications through his tube. He is having panic attacks when he wakes up, he does not know where he is, and does not remember being in the accident. He is having nightmares from being under the paralytic medication, and needs continuous reassurance that he is safe and being taken care of. Like I said… physically, we made lots of progress today. But mentally, for Bryce, today was the worst day he has had.

7/31/2021

Today was a relatively uneventful day. We did so much yesterday, he needed a day to recover. They are still weaning him off of his medications. His nurse last night weaned him a little faster than they had been weaning him up until this point. There was apparently a difference between the way the order was written by the physicians and the note pharmacy had put in for his weaning plan. The doctors think that some of his anxiety is coming from the weaning process, as he is more aware, he feels things more acutely. The brace, the NG tube. The IV’s, etc. and feeling those things with out really remembering how they got there is scary. He did have an X-ray to make sure that he is properly aligned in the new brace. X-rays are always stressful for him, because of the moving and turning and the hard backboard they have to put him on. And the X-ray techs are not the most warm and fuzzy members of the care team. Still waiting on the X-ray results. But you’d think that if they were that concerned/if there was something obviously wrong, they would have fixed it immediately. They are attempting for the second time to let him go without the urinary catheter. He peed at least once on his own, which is great news Speech therapy does not come on the weekends, but he was given permission yesterday to use his speaking valve with the respiratory therapist in the room. So today he used it for about 10 minutes before he couldn’t tolerate it any more. Hopefully he will learn to tolerate it longer and longer!He is about half way to his goal rate for his tube feeding, which means he is halfway off of the IV nutrition. He has so far tolerated all of the increases to his feeds, but still does not tolerate medications down his NG tube. They have started giving him IV zofran before giving his meds, and while he still does not like it, and there is still quite a bit of anxiety there. When he has been given the zofran, he has not thrown his medications up. The three things keeping him in the PICU are his IV medication, IV nutrition, and waiting for his first official trach change. As long as nothing goes wrong, and they are able to continue weaning him (sometimes they have to slow down the weaning or increase the dose if they were weaned too fast and start to show signs of withdrawal). Once he is off of those things, and his trach has been changed for the first time, they can take out his central line, and move him to a regular peds floor. Hopefully that will be Tuesday/Wednesday. We worked through quite a few panic attacks today. His spirits were up and down. When he was high, he was smiling and laughing with the doctors and nurses. When he was low. He was crying and in absolute despair that he has not been able to see his siblings, and the daunting task of healing, and feeling like it’s never going to end/get better. But the highs are closely followed by the lows. We have been reading the Bible and praying together for hours every day. We are working our way through Psalms and Isiah. Usually he asks for 4-5 chapters of the Bible when I come in before he wants to have some quiet, and then later will listen to podcasts or audio books.

8/1/2021

We are two weeks into the healing process. Today we got rid of 4 pumps! Two were IV nutrition, one was maintenance fluids, and one was his fentanyl drip. By tomorrow we will be up to goal rate on his feeds. And by Tuesday we will be off of his last IV sedation medication. Either Tuesday or Thursday, he will have his first trach change and be able to be transferred to a regular pediatric room. Our biggest battles are his anxiety and nausea. We had a pretty good day today, compared to other days, we had less panic/anxiety attacks. He is tolerating his medications through his feeding tube much better. However he still feels nauseous quite often. And typically is vomiting at least once a shift.The hardest part of his vomiting episodes is not the vomiting itself, but the cleanup. The brace he is in now is basically a turtle shell. It covers him from the back of his head to his shoulders, and from shoulder to waist with a hole for his trach. So when he vomits, the whole team has to come in to take his brace off, hold his head and neck still in order to clean him. His undershirt has to be cut off, and all of his leads/padding taken off/changed. Which is 100% terror for him. The number one thing he wants to do to calm down is have you read to him out of the Bible. But even that today was anxiety provoking because he at one point after I had gotten him settled down I got to a passage about the rapture and he started hallucinating Jesus coming down from the clouds and completely freaked out because he said he wasn’t ready and he didn’t think he was going to go to heaven… so we had a whole long conversation about knowing and loving Jesus and not having to worry about where he was going because Jesus loves him and he loves Jesus. And we read a different passage in Isiah, and he was beside himself crying and upset at how harsh Gods wrath towards the Israelites was… The nurse thinks that a lot of it is related to coming off of the high doses of narcotics that he was on. He is such a sensitive kid to begin with, and now everything is heightened and he is more sensitive than usual.

8/2/2021

Today was our best day yet. It started off a little rough. D had to call me at 6:40 to come to the hospital because Bryce had thrown up and was upset and asking for me. But the nurse that came on today, really tried to go the extra mile to make sure that he had a good day. As it turns out, yesterday, he was apparently scoring really high on his wean assessment, but was not getting the appropriate treatment to ease his withdrawal symptoms. Thus his hallucinations, and extra sensitivity to stimulation. Today, his scores were much lower. Other than the one vomiting episode in the early morning, we did not have any other issues throughout the day. We were able to get his brace off and cleaned up quicker and with less panic than we have yet experienced. He and I played a game of Monopoly. And he spanked me. We played pretty much all day. We read cards, we did some stretching. He was still anxious and had a few mild episodes where he would panic, but not nearly as many as previous days. His glasses came in today! This evening they removed the last of this central/arterial lines! And have him a new peripheral line. The idea of getting a new IV was anxiety provoking, but the nurses talked him through it and he did great.

8/3/2021

Big day today.We got through the first trach change! And we are completely off all of the sedation meds! The trach change was a big deal because up until now, he has still been considered a “critical airway.” When a trach is fresh, there is a possibility that if it comes out accidentally, when it is put back in, it could make what is called a secondary track. Basically, they are afraid that it would look like it went back in correctly, but made its own path in the tissue. Now that the doctors have done the first change, and they know it went in correctly and is a clean/healed stoma, they know that should something happen and it accidentally come out, it is safe to put back in. Now that we have had our first trach change and are off the last of the IV sedation, he is safe to transfer to a regular pediatric floor! He is currently getting one of his two final doses of IV antibiotics, and all the rest of his medications have been switched to “oral” via his feeding tube.The wound care nurse comes once a week to look at his skin. The injuries from the accident are all healing well. He has a few irritated areas from the brace. It is like having a full body cast on, and we are trying to clean/dry/maintain his skin as best as we can, but it’s not easy. We do not have a bed assignment yet, but hopefully by this evening will be in the new room.

8/4/2021

We have made the move to the pediatric unit! Yesterday we met with a doctor from Physical Medical Rehab. She came and tested his sensation, his eye movement, his muscle tone, etc. The good news: she believes all of his nerves are firing. She was the first doctor to actually use the words “traumatic brain injury.” She said she believes he has a mild to moderate TBI. If she “had to put a number on it” she guesstimates about 15% of his brain has been affected. But that’s not an official number, just her best estimate based on his scans. Last week, we talked about the strokes he had experienced. On her exam, she saw effects on his vision/eye movement from one of those strokes. She also believes he has what is called central cord syndrome, meaning the middle part of his spinal cord was most affected. Central Cord Syndrome manifests as weakness/paralysis of the upper extremities (some lower extremities may be affected… but mostly upper) he has experienced some decreased sensation in his feet. But more so in his hands. Right now he has very little finger dexterity. Imagine trying to use ping pong paddles with thumbs as hands. Some of his fingers he can not feel at all, some he can only slightly, some have full sensation. The play room here set him up with Minecraft on the Xbox, and while he is happily playing now, there was quite a bit of frustration/agitation/anger/all the emotions as we started trying to play. He has to manipulate the controller with the heel of his hand, and push some buttons with his leg. But “adapt and overcome” she was hopeful that since he is so young, other parts of his brain could take over and he would be able to get back much of his functioning. Occupational therapy and physical therapy have started working with him daily. The second stroke he had, you may remember was in an area of the brain that affects balance and coordination. So, per the PT/OT therapist, he “has the strength” to move and walk, but actually putting one foot in front of the other is going to prove difficult. Today we were able to stand/pivot him into the wheelchair chair, and he was able to take a few shuffle steps whith the therapists using a walker, to the wheel chair. They gave me permission to get him in/out of the wheel chair, but absolutely no walking with out them. He has exercises he is supposed to do in the chair, and in the bed. We get the official swallow test later this afternoon with the X-ray and fluoroscopy. Hopefully they will see all good things and we can be advanced off of ice chips! Please keep Derrick, Jamie and Ricky especially in your prayers today. Linda’s funeral was this morning. I stayed in Chapel Hill with Bryce and Reece, and Derrick, my mom, and the rest of the kids had a bit of a rough trip down this morning. Prayers for a smooth/safe trip home.

8/5/2021

The days seem to be getting longer and shorter at the same time. I told the neighbor on my way out this morning “we are out of the ‘saving his life’ phase, and are in the ‘what does the rest of our life look like?’ Phase.” Bryce is no-longer experiencing intense panic attacks. Instead he has adopted a flat affect. He will be animated and talking when something “fun” like the PT/OT girls coming in to play games, or the speech therapists working with him. But as soon as they are gone, his face falls into that flat/emotionless stare, which almost feels worse to me than the panic attacks. During the panic attacks, you could still reach him, you could pray with him, read him scriptures, etc. now, he is just shut down. I have been reading a devotion to him, every morning, and praying with him, but his heart isn’t in it. Lots of different groups are coming in to “talk” to him. Counselors, therapists, chaplains, etc. it’s like a parade of people coming in, literally one won’t even be out of the room before the next pops in I asked the doctors this morning during rounds if they would please talk to whomever coordinates all the talkers, and limit them to one person.FaceTiming with his siblings/family is great for his mental state, but completely physically and mentally exhausting. A five minute conversation leaves him completely drained. Like I said, he is really enjoying working with the therapists. But, when it comes to doing his exercises throughout the day, he is less than thrilled… it’s like taking a tennis lesson and having so much fun with your friends in class, and then going to practice your serve for an hour by your self. The therapists have him doing balancing exercises (learning to sit and balance himself in his brace, coordination and strengthening drills/games). The proof is in the practice though. It’s all fun and games during sessions.The case manager said this morning, we could potentially be sent to rehab as early as Tuesday. In order for that to happen, he has to have a feeding plan, and to be hitting his goals along the plan. After his barium swallow test, they cleared him for thickened (nectar thick) liquids, and “soft” food (oat meal, mashed potatoes) and small bites of things like ham burger that you can chew into a mush. So today he had about a table spoon of mashed potatoes, oatmeal, and hamburger. The goal is to try to get him to goal calories, and be able to take his NG feeding tube out. For the time being while we are trying to get him to eat and have an appetite, he is still getting tube feeds at night.

8/6/2021

Progress progress progress. Today was a better day. His mood was way better, he asked me this morning Him: how about we finish the movie we were watching yesterday?Me: how about we do our devotions first?Him: oh! Good point. And from there we had a pretty good time of it. We read books, and talked, ans played pinball, and he played a little Mario cart. He is working hard in his therapy, and getting better about doing his exercises with me, but usually that is “let’s get these done and then we can go to the play room.” Or “give me 10 marching knees and I will help you get back in the bed.” Food is not going great. His doctor is letting him be off the feeding pump in the day time and lets it run from 8p-7a. If he eats less than 50% of his meals in the day time they are giving him bolus feeds to make up the difference. If I said he ate 25% of one meal today that would be a stretch. But it’s ok, we will take our progress where we can get it!The neurologist wants a repeat MRI before we go to rehab. Hopefully that will happen this weekend or Monday. It was supposed to happen today… but we didn’t get a time.We are up and down with bowel/bladder control. I know he is super self conscious about it. He hates having someone change him… it’s better when I do it I think but I am not there all the time. However, he is being very gracious about it. And hopefully those nerves will repair themselves fully by the time we are done with rehab.

8/7/2021

I’ve got next to nothing to report. We again spent the day waiting for an MRI that never happened. You know that feeling when you’re supposed to hang out with a friend, and you know they are kind of flakey, but you made plans with them anyway? And the longer you sit and wait on them the more sure you are that they aren’t showing up? That’s kind of how it felt today. Except that for Bryce, the idea of an MRI looming over his head, doesn’t make him sad like being stood up (though there is some of that too) it is more anxiety provoking. He has had several through out his hospitalization, however he is now awake and aware, where as before he was sedated to one extent or another. Every time we talked about it, we re-explained what was going to happen and how they would keep hom safe. The problem was, his brace has magnetic metal in it, so the MRI team wanted him to be in the MRI without his brace. But he knows he can not be without his brace. If he does not have his brace on, someone is supposed to be holding his head and neck still, which for obvious reasons can’t happen in an MRI. So it was a while back and forth and consulting with doctors about how he was going to get the MRI done. Finally everyone agreed that he could wear his old brace (the Minerva) even thought it does have some metal, it is not magnetic metal. All of that discussing and back and forth, for an event that never happened. On the bright side, he ate about 20% of his breakfast today (even though he started eating at breakfast time and finished eating after lunch time…) we are still working on getting foods he actually wants and can handle. We have eliminated oatmeal and ground sausage from the rotation because both have choked him multiple times. We were able to take him outside today! We got a hall pass for an hour to wheel around the hospital and explore! We looked at paintings, visited the chapel, and looked out the window!

8/8/2021

Well. As far as days go, I think today gets bonus points for being both high and low. We had a really good morning. We went outside and enjoyed our hall pass under the shade of the walking bridge. Mom met us with the rest of the kids and they got to visit finally it’s not explicitly against the rules… but it’s also not exactly encouraged.After three days of waiting, they finally gave us a time for the MRI. Which was a complete bust. I helped to get him changed into out of his custom brace and into the Minerva because of the metal/magnet situation with MRI’s. He got a dose of Ativan, and was a little nervous when they wheeled him out. But he ended up in a complete melt down, and even a second dose of Ativan did not calm him down enough to be still for the MRI. I’m not saying that had we gotten the MRI done on Friday, that we wouldn’t be in this same situation. Maybe we would. But three days of anticipation and build up, for an already anxious 10 year old… The plan as of now. Is to make him NPO at 2am and talk to the pediatric anesthesia team when they come in in the morning, to try to get him a time to do the MRI while under sedation. There are lots of reasons that is not ideal. But it’s where we are… pray that the timing and everything goes smoothly, and that they see the healing and improvement they want to see when they get it done. Other than the MRI… we are working on his feeding plan. So far, any kind of meat has been a solid “no” from Bryce. I even tried bologna today, ans the first bite was great. The second bite choked him a little bit and he got very anxious and had me suction the rest of the bite out of his mouth, and had the nurse come deep suction him (which he HATES) just to be safe. We have had success with coconut milk yogurt, and mashed potatoes. Limited suggests with grits and eggs. But not enough success at any meal time to be able to skip a tube feed meal. We were supposed to be on the schedule for PT today, even though it was a Sunday. But we did not see them. So hopefully tomorrow we will get a session in around the sedation…

8/9/2021

“Do not be anxious about tomorrow, for tomorrow will be anxious about itself. Each day has enough trouble if it’s own.” While we had enough trouble for today, it was also a really great day. My big brother made a quick trip up from Florida to see Bryce today. They played Monopoly pretty much all day. They started the game before Bryce went down to MRI (which finally got completed under sedation). And didn’t finish until about 4:30 in the afternoon. No official read on the MRI, we will hear from the neuro surgeon in the morning. But the peds doc. on his floor said that from what she saw, she things everything looks good and like the surgeon would want it to. Eating was not great today. He had to be NPO for his MRI because of the sedation. So, no eating by mouth, and no tube feeds either. Then in the afternoon I was able to get some mashed potatoes in him, but dinner was a “fiasco.” If the insurance authorization comes through, we will be headed to Greenville tomorrow afternoon to start the in patient rehab portion of our journey. I spoke with the insurance company twice today. But trying to rush an insurance company is like trying to rush the cycles of the moon… you can howl all you want, but it’s still just going to happen when it happens.Second trach change is tomorrow, and the last of the sutures in his neck will get to come out at that point.

8/10/2021

Early update today. We officially have insurance authorization for inpatient rehab. We are leaving UNC tonight at 8pm and headed for Greenville. He is still on the struggle bus with his bowels and nausea. But we are being discharged anyway! Looking forward to what the next few weeks/months bring progress wise! As we are heading out of acute care, I will continue to do little updates, but will not be doing massive tagging… I will try to do weekly updates and tag more in those

8/11/2021

I’d love to say that we are all systems go, and we made a seamless transition from one hospital to the next. But sadly, I’m not sure that’s ever really the case. We spent the day getting orders corrected, and making sure they were set up for him. Things get lost in translation, they get lost, forgotten, unmentioned, and ignored. Every step of the way has been more traumatic than it needed to be. He keeps asking some version of the question “Why do all of the bad things happen to me?” It’s heart breaking to watch, we advocate as much as possible for him. But if this experience has taught me anything, it’s that our system is broken, and no matter how hard you try, things are going to fall through the cracks…which just means you have to be extra vigilant all the time to make sure everything is as it is supposed to be.

8/13/2021

We spent most of today in the bed. The orthotics team had his brace in the lab making adjustments to it hoping to decrease the rubbing and skin break down on his chin and under his arms. Which meant all of his therapy sessions today were bed sessions instead of being up and moving around. Outside of his therapy sessions, we spent the whole day trying to get his food in him. He ate his breakfast between therapy sessions started at 0830 and finished at 1130. Lunch took us from 1230 until well after 4 to eat. We still don’t have it quite right because the brace is now interfering with his trach, and his ability to wear his speaking valve. When he doesn’t have his speaking valve on, he can not eat, drink, or speak… His NG tube got removed yesterday, so it is imperative that he be able to take food/liquids by mouth. Going into the weekend, I’m not sure how we will address the brace issue.

8/14/2021 (posted 8/15/2021)

Fell asleep trying to post this last night The day threatened to be just as difficult as yesterday, Bryce was mid bed-bath when I arrived at the hospital this morning, and as soon as his “turtle shell” was to be put back on, he started getting extremely anxious and thinking he could not breathe. The pediatric respiratory therapist came in and did trac care, and that send B over the edge. Whenever they change the trach ties, he starts coughing, and panics (again, anxiety causing him to feel like he could not breathe).Immediately post bath, he was scheduled for PT, and the therapist only had him out of the room for 45 seconds before they were back because of his Anxiety. He ended up being able to do his therapy session. And when he was done, the brace guy came and took the front of his brace and made the adjustments we needed. He was able to increase the size of the hole for his trach, as well as add extra padding to his chin! His mood was so much improved he ate more for me than he has any day so far!

8/15/2021

No therapy today… Sunday rest day. But we had a good day. Bryce got to sleep in, listen to today’a church service, we played games, ate our meals, did his exercises, and made him walk around his room as much as possible. He was actually in a good enough mood to put together the mini figure from a lego set “we” are working on. It took him a solid 10 minutes to get the 4 pieces of the mini figure together. But he finally got it together.

8/16/2021

PT this morning. He is “doing really well” but his spirits are down… I can’t pretend to know what is going on in his head, since he is not talking about it. But it almost seems like the “better” he does, the more depressed he is, depressed that we are so excited about something he should already know how /be able to do. Things like beating the therapists at games he loves, because he is good at games without help. But sitting/standing/bathing/personal care…

8/17/2021

I was too mad yesterday to make a post.The hospital has decided that since covid numbers are rising, that my mom can no longer see Bryce. Up until now we have been taking it in roughly 8hr shifts between the three of us. Now it is just me and D. According to the case manager they “do not expect us to be here 24/7” and “he will be well taken care of” while we are gone if we need time with the other kids/each other. Even after listing off the things that we have caught every single day that is wrong in the computer/against his doctors wishes from UNC/ wrong foods/ etc. and making it clear that I do not trust that he will get appropriate care while we are gone.Between pumping and my mom bringing Reece to the hospital, we are doing our best to maintain my milk supply and his breast feeding journey.

And yet… they still kicked my mom out. “Because Covid”

That being said…Therapy is going fabulously. He enjoys occupational therapy more than physical therapy because OT is games and fun stuff. Physical therapy today we went to their simulation town. We practices getting into a car (front and back seat) which was much harder mentally/emotionally than it was physically. We practiced opening the fridge And when I mentioned that the case manager did not think he would need a hospital bed when he goes home, he got really moody… so his PT made him practice getting in and out of a regular/flat bed. His (our) goals before being discharged are

1. In and out of car

2. Steps (since we have stairs going into our house)

3. Independent movement with wheelchair/walker/etc) He is going to the bathroom in the bathroom. I think we have figured out a bowel regimen that is working.

He is eating about 80% of his meals. And not getting enough hydration, but the more efficiently he eats, the more time we can spend on drinking!

8/20/2021

The doctors discontinued his continuous pulse ox monitoring (we nicknamed him wall-e) which means it is so much easier for me to take him out of his room by myself because I don’t have to tote a piece of equipment with me! I can walk with him in the hall of his unit, and today we went outside for the first time in a week, and even climbed on a tiny piece of playground equipment! He is working so hard! Doing all of the exercises I ask him to do. The days a long… sitting in a room for 12hrs… but we have been making it work, therapy gets us out of the room. I have him eat his meals in the dining room. We are listening to audio books, reading books, opening cards, playing games. Life is hard, but it is also rewarding.

8/25/2021

Passed our swallow test today! No more thickened liquids! And back on a regular diet!

Incase you needed more cheering up… we played a little soccer today Working hard and smashing goals. Can’t wait to bust out of this place!

8/29/2021

Good morning all! We are going home Wednesday 9/1! Bryce has enjoyed all of the cards that have been sent! We get a few in the mail almost daily, and always sit down after breakfast to read them. If you want to send cards now, please send them to our home address

9/1/2021

We are home, safe and sound We made it from the PICU to home in 6.5 weeks! They did not think he would even be out of the PICU at this point, and we are home In patient rehab was hard. For our entire family. There were so many ups and downs. I had to use my non voice more than once, and not just to Bryce… We met some amazing people who were always able to get us to smile and laugh, even when we had just been crying. I am so grateful for the family and friends who have supported us while we were gone. We could not have made it this far with out every helping hand and healing prayer that has been given to us. I keep telling the kids “now the real work begins” it was “easy” to put the work in when the goal was to get home. Now it comes down to determination and self motivation to continue making progress towards full healing.

9/11/2021

Small, good news update on the nursing front. While our insurance plan does not cover PDN nursing, they do cover a certain number of skilled nursing visits, 4 hours each. So we have been able to have Bryce admitted to a home care agency who will be providing him a nurse 3 days a week for 4hours!We did the admission yesterday, and had our first nurse visit today. I can’t even begin to tell you how much it helped having someone do the “nursing” for that chunk of time. I made our school schedule for the week, I took the rest of the kids on a walk, I got the outside chores done, and Bryce was able to come out while we were working because his nurse was there to walk with him instead of being confined to his wheel chair on the “patio.” I made dinner… and because all of his nursing care (trach care, etc.) was already done before she left, we were actually able to go to bed on time!