02 Brayden Millon

Update: Aug 14 6:30pm

I’m not quite sure what or how to update at this point. Brayden was supposed to get his staples out of his head today but as of yet that hasn’t happened. Braydens blood pressure continues to be very low. He’s always tired and always cold. He refuses the peg tube feedings. He will drink some broth, water, Gatorade, and hot chocolate. Not enough to sustain him though. His headaches continue, obviously with a TBI, and he also has a lot of pain still with his left leg and foot. He did really well with PT today and pushed himself pretty hard from what I was told. He did 45 sit-ups which I found super impressive. Brayden and Madison both said that the drs are saying if Brayden continues doing well it’s possible that he could be out of TIRR in three weeks or so.

On day 26 of being in the hospital, which was 6 days ago, I was told by Brayden that I needed some rest and I should go home and get good rest and Madison would stay with him. I told Brayden that I wasn’t comfortable with that because I made a promise to him that I wouldn’t leave until he left. He assured me he would be fine and if anything happened that they would call me. That night Brayden had a huge blood clot and had to be rushed to emergency surgery to break up the clot and cauterize the bleed because he’s been on heparin and he wouldn’t stop bleeding. They went in through an artery near his pelvic bone and up to his face to cauterize the bleed. I was never called. I found out about it the next day around lunch time. I asked Brayden why I wasn’t called and he said he was told I wasn’t close so he had his dad called instead because he was closer. Ever since I left that night on day 26 I basically have to ask permission to even see him and usually when I call/text I get a message saying that he isn’t accepting visitors.

Personally, I feel like more should be done about Braydens TBI. No one at the hospital is properly addressing it medically. The staff has said on numerous occasions that because he’s awake, alert and oriented, then he is competent to make his own decisions. I feel like he should be at TIRR in the Med center because they have a much better Neuro-Psych program at that TIRR location. I asked Brayden why I wasn’t included in helping him decide which location would be best for him and he said he decided because he was told he wasn’t strong enough to make the transport. I would LOVE nothing more than to have him transferred to the Med center facility because he NEEDS HELP with this brain injury. He needs to be properly assessed and no one will help me help my son. I’m at a loss. I don’t know what to do or where to go. Brayden has been told that this entire situation occurred because he’s clumsy. He’s been made to believe that he’s the one at fault and no one else has to be held accountable. He’s angry that he has to be there but he doesn’t understand why all of this happened. I can’t help him because I have basically been removed and not allowed to come up without an invitation. I’ve taken care of him his entire life. I know his medical history like the back of my hand and no one will listen to me. I keep getting told that Brayden is 18 and he can make his own decisions and no one will talk to me about his health care because he’s the patient.

My ask of y’all today is simple. PRAY for my Bub. He needs neurological help. If ANY of you happens to know someone high up in the Memorial Hermann medical system, I NEED to speak to someone about getting Brayden proper medical care that will address his neurological issues. Thanks again for all the prayers and support.

Love,
Stephanie

It’s a shame that I would even have to say this, however, I do realize that there will always be people that question the intentions of others, especially when they are being told things that are very untrue.

For those of you that question where the gofundme donations are going, please rest assured that I have taken every precaution to ensure that whatever is donated to Brayden, will be FOR Brayden. I have already set up a Trust for Brayden where all of the gofundme donations, the Fish Fry Fundraiser For Brayden Millon donations, the Silent Auction benefit donations that will be held at Dry Creek and the Kendra Scott benefit donations, will ALL be deposited into this trust for Brayden. If you have donated to any of the other things that were previously posted like the gun raffle benefiting Brayden or the all proceeds go to Brayden Brayden Strong Tshirts and Hats, none of this will be included in Brayden’s Trust. I cannot say for certain if any of those donations will be specifically for Brayden or not as I am not associated or affiliated with them in any way. This doesnt mean that they wont go towards helping Brayden. This just means that I have nothing to do with those benefits so I could not tell you where those donations will go. I just know they aren’t being included in the trust for Brayden. Donations made to any of the benefits I mentioned above as well as the gofundme are the most certain ways to make sure that your donations will remain specifically FOR Brayden.

As you all know, this will be a very long road of recovery. We thank you all so very much, from the bottoms of our hearts and to the depths of our souls. THANK YOU, for all of your love, generosity and prayers. Especially the prayers. Without all of you prayer warriors talking to God every day on Braydens behalf, I do not believe we would be in this position.

Love,
Stephanie

Update: 8/6 10pm

Y’all this is gonna be short and sweet. Brayden has been feeling some kind of awful today. Horrible, terrible migraines. Horrible belly aches. Tried so hard to have some of the cream of chicken soup broth that he really liked and the warmth of it felt so good going down. Had some of his protein drinks and a few swigs of juice. Just couldn’t kick the bad belly aches. Infectious Disease NP just walked in and said one of the nurses the other day said they were going to send off a stool sample for Cdiff but she never heard back about it so she would check on that for us. I was like, whoa! That’s news to us! No one ever told us anything about that! ‍♀️ Hoping and praying that is NOT what we are dealing with.

Trauma dr came in today and said she heard from neurosurgeon and they do not see ANY tears in the c-spine. They said typically they try to wait to do MRI after all the swelling and edema has gone down but the first neck MRI couldn’t wait. They said the edema can cause areas of the scans to appear like there may be areas of tears or separation. Apparently this is not the case at all with the new MRI. There is NO damage found. Is the area injured? Yes. Are there tears or breaks or fractured? Nope!

They have Brayden off all IV drops now. He seems to have tolerated it pretty well. He did have a bit of an anxiety attack earlier but it was mild in comparison to anything else. They are bladder training also. He’s pretty much done great on that as well. Not too much longer hopefully. They said they are thinking maybe TIRR sometime this coming week. I’m a little floored at how fast this whole progress process is going.

So this is where my head and my heart are today. Somehow (thank you GOD! He is how!) this child fell 40 feet down, landed on his face and miraculously has no damage to his neck, spine, or spinal cord. No internal organ damage. No serious brain damage. And he is ALIVE! God is so freakin GOOD y’all! I know all the prayers that have circled the globe for Brayden have 100% helped him along the way. For every step, Brayden keeps fighting, y’all keep praying, and God keeps showing up! I cannot thank you all enough for all of y’all’s help with talking to God in my Bubbas favor.

Even though today wasn’t that great for Bub because he hasn’t been feeling well at all, it was still a day full of HOPE. And those are some of the best kinds of days.

Love,
Stephanie

Update: 8/5 4:30pm

Ok, I have a little bit more clarity. I feel like I can post an update that is easier to understand, especially since I understand a little more of what’s going on.

First off, Brayden had a horrible night. They started weaning him off the medicine they were using for anxiety. I asked why this was necessary, especially since we already know how much he has benefited from it, and I was told because they want him to be on as few medicines as possible. I get that completely but was still confused as to why it had to be that one. Well, we had gone down by half by middle of the night and Brayden was pretty much up from 1:30 until 6am every single hour. There was a point where he was awake for a few hours because of the anxiety but it was causing extreme confusion. Or it could’ve been extreme confusion causing the bad anxiety. Pretty sure they were just feeding each other. It was horrible to have to see him like that. Struggling to understand if he was dreaming but was certain it was reality. My mom and I took shifts consoling him and trying to get him to work through it.

Brayden was so excited to get his chocolate milk this morning. Poor guy drank half the chocolate protein shake and was so tired from being up all night long with no real rest that he fell asleep before he could even drink his trumoo. He took a little nap but then they woke him up for other things which only upset him. His migraines got a little worse progressively throughout the day as well.

Brayden had his lunch delivered and was SO excited about his chocolate ice cream! Unfortunately though, PT showed up at the same time and wanted him to get him into a wheelchair to wheel down the hall and look out the window. He wasn’t happy about it but said ok. They put on more appropriate wrist splints so that he could help wheel himself. He and the PT guy traded off turns. Brayden did a lot more than they expected. When he got to the window I asked him, I bet right now you are so happy to be able to see the sky and look out at the sunshine and all that green! You love outside huh bubba? He said yeah, it’s nice. It’s bright. his head started hurting really bad and he was pooped so we went back. He did amazing though. Super proud of him!

Had Neurologist NP come back and explain the findings of the brain/neck MRI from yesterday. That was the source of my confusion that I really needed clarity on before I could post an update. Last night the night NP got a call saying nothing of concern was found in either MRI. This confused me because how do you fall 40 feet and not have any brain injury and what about the 3rd nerve affecting the eye? And what about the torn ligament between C4 and C5?! My head has been reeling trying to figure out what the heck was going on. Well, neurologist said yes, there absolutely is concussion, tbi and we are possibly moving into the era of post concussive syndrome now. She said there is something wrong with that 3rd nerve but the scan cannot see that area. We will have to follow up with a Neuro-ophthalmologist. She also said as only a neurologist and not neuro-surgeon they cannot comment on the ligament damage between C4 and C5. What she can say is that it’s still there and we will continue with the collar for the prescribed 6-8 weeks. She said to follow up with Braydens regular neurologist as out patient for EMG nerve tests to make sure there isn’t anything more damaged with those nerve areas.

As of right now, not this Monday but the next Monday is when Plastic Surgeon will be back to take out the staples, jaw wires, and assess the area between Brayden’s eyes one last time, hopefully. We were told today that at some point that week Brayden will be getting discharged to a TIRR facility because he’s improved by leaps and bounds and far faster than they were expecting.

Here’s to hoping and praying we will be at home in PG very VERY soon. Brayden told our nurse last night all about Bob and how much he misses her. She asked who Bob was and I said oh Bob is his dog! He said, no mom Bob is my child! That warmed my heart because he has always called her his child. The nurse thought it was cute too.

Thanks for hanging in there with us y’all and not giving up on us we appreciate all of you more than you know! Your thoughts, shares, prayers, advice. All of it is so very appreciated! We love y’all! With our hands and faces to the sky, let’s keep fighting this GOOD fight together! Because, if God is for us, who can be against us?!

Love,
Stephanie

Update: 8/3 5pm

It’s been a long busy day. Im not gonna lie, it’s probably been one of the most stressful since we’ve been here. Not the most stressful, but certainly one of. There was so much going on and coming at us from all directions. Constantly. All day long. Nothing bad, just a lot.

Braydens left foot surgery went well. The dr had to repair 4 joints with wire, pins and screws. The foot has to be non weight bearing for 8 weeks. While the dr was in there he removed the staples from Brayden’s knees because those healed nicely and were ready to come out.

Finally got our Neurology consult. Hooray! They started Brayden on topamax for migraines. He had been taking this for a few years since before the accident. He had just gotten to a point, about a month before the accident, where he wasn’t getting migraines anymore so the dr had weaned him off the meds. Unfortunately, because of the brain trauma and him previously having migraines, they have basically been reactivated. Only way through it is to treat them with the preventative meds. We discussed the c-spine injury and if it could have something to do with the numbness on his right side and now the left, as well. They said absolutely sounds like it’s part of that injury. They did some physical tests and decided an MRI of the neck and brain is necessary sooner rather than later to properly assess the damages. They also tested his eyes. The right eye just doesn’t track and follow properly anymore and the left eye isn’t responding to light as well. The third nerve is apparently the culprit of the right eye. That nerve controls the eyes movement and the eyelid. The MRI will help diagnose the issues with both eyes and how to go about fixing them.

Speech pathology came by as well. She thought he had the Passy Muir valve in when she walked in because she heard Brayden talking up a storm. He didn’t and that threw her for a loop. She did all kinds of assessments; cognitive, memory, etc. He did well for the most part. Got very confused about where he is and he’s been confused about it all day. The other assessments and such went great. He’s retaining info, remembering info etc. She also did some swallowing tests. She slowly gave him some syringes of water, which he was so grateful for. He has been saying he’s so thirsty. She said soon, hopefully tomorrow, she will take him down to radiology and do some more swallow tests to make sure he isn’t getting any into his lungs. After that we can start introducing puréed foods and such.

PT/OT came by as well. They did some supported edge of bed sitting with his feet/legs extended onto a chair. They wanted him to do 5 min but he went ahead and did 15 min. Then he said, ok I did it. Now can I go home?! All he wants is to go home, poor guy.

Plastic Surgery came by to remove some stitches and check out swelling. He walked in and was so taken aback by how great B looks. Then B opened his eyes and said, hi! The dr looked at us and was so amazed. He held Bs hand and asked if he could just look at him for a moment. B said, sure! As the dr stood there looking at B and how great he looks and the dr was processing that he just heard him speak and saw him awake and alert, his body just kinda melted and he broke down and had to excuse himself really quick. He came back and said it’s so amazing how far he’s come and he just wasn’t expecting that right off the bat. He asked Brayden if he could take his picture and B said, yeah! And then he threw up the and a grin. We asked to get a pic of both of them together. It’s pretty awesome!

The rest of the day has been spent trying to talk Brayden down from the confusion of certain details and memories. What’s for certain is that in the last 24 hours he asked for his phone 4 different times and doesn’t understand why someone took it, he wants tutti frutti and he wants it now not tomorrow, he wants his truck back from the shop and if Papa needs to pick it up that’s ok because he just wants to drive it home. All in due time, son, all in due time.

Now starts the real nitty gritty work that is going to be hard, mentally and emotionally, for all of us. Watching your child go through pain and panic is terrible. Watching them have to go through this never ending cycle of where and when the now exists is a whole different ballgame and I never did receive that rule book.

Thank you all for being on this roller coaster with us and not opting to hop off. We appreciate y’all’s love, support, and prayers. We love y’all.

Love,
Stephanie

I sat down to write an update many times today. It was a very busy day. So many things going on and up in the air. Lots of progress. But at the same time I’m a little confused by some of it and I really need some clarity. I decided I would wait until tomorrow morning after I speak to the drs during rounds. Hopefully then I will fully understand so that I can post a factual update.

For now though, I would like to leave this here. For those of y’all that know me, you know that for me, music isn’t just sounds and beats strung together. Music is feeling. It’s emotion and explanation when words don’t suffice. This song found me today and it instantly hit a chord in my heart strings and sent chills through my body. It just resonates with my soul and speaks to the journey that we are on right now. This new path that God has brought us to. I know that as long as I have faith in Him and this journey, He won’t give up on us. The terrain is uncharted and it will be rough, but I know in my heart, He won’t give up on me or Brayden. There will never be a moment in my life where I do not thank HIM for the gift of my son. I am eternally grateful.

Love,
Stephanie

https://youtu.be/dVz6yimuTgU

Update: 8/1 9:20am

Trauma dr came in a few minutes ago. Brayden WBC numbers are low again. They are going to put tomorrows surgery on hold for now until the can figure out the fevers or type of infection going on. They did start him on the antifungal medicine last night.

Trauma Dr also said they are going to wheel him downstairs in a bit for a full CT to check for anything that could’ve been missed before. They will also be removing the arterial line today.

RT came by and took B off the ventilator so he’s breathing completely on his own. They will switch it out a little later.

Last night B woke up scared. He wasn’t in a full on panic, thank goodness, but he was scared and crying. We talked through it all. He told me, without words, that he wanted to wipe the crusty gunk off his eyes from the ointment they have to put on them. I got him a soft warm wipe and took his paw out of the mitt and he very gently wiped off both eyes with the cloth and then the sides of his nose too.

When he was done I just held his hand and we went over the whole thing again.
You’re in the hospital because you were in a bad accident. Everything is fine and the drs and nurses are fixing you up really good. As soon as you are all better then we can go home. I love you so very much and I won’t leave you. He mouthed I love you, closed his eyes and drifted off to sleep.

I can only imagine how terrifying it must be to keep waking up and not recognizing any of the faces that are buzzing around you, all while being strapped to a bed and unable to talk. Even if he never remembers me by his bedside soothing him and talking him down, that doesn’t matter to me at all. I know in that moment that my baby is terrified and I know as his mother that I can make that better for him. I am helpless to make any of the other stuff better. What I can do is be there for him to help with his anxiety, whether that’s once a day or 50 times a day. If I can help him feel safe and remind him he is loved in that moment then I will be here to continue doing that for him. I’m his momma and mommas make it better.

We love all you and are so thankful for y’all’s support and prayers.

Love,
Stephanie

Update: 7/31 1pm

Mondays are so busy! RT came by early this morning around 7am and switched Brayden over to the CPAP so he could breathe on his own. They came by almost an hour ago and switched him back to give him a break for a while. They will probably try again later this afternoon.

Plastic Surgeon came by right before 8:30am and removed the stitches from above Bs eyebrows and around the tops of his ears. He also removed the drain from his head. This whole process caused Brayden a lot of pain. My mom and I held each of his hands and reminded him where he was, what just happened and why, and reassured him that he’s safe and we won’t leave him. The Dr said he will come back by and check in on the progress of his healing and let us know about the possible need for another surgery where the bridge of his nose between his eyes meets.

Trauma Dr came by around 930am. Said we will be taking baby steps in reducing the fentanyl and versed, very gradual, so as to not cause a repeat of the other day/night. She said we have a few goals over the next week. First they want to find/figure out the cause of the spiking fevers. They did a chest X-ray the other night that shows a small area of concern on the top lobe of his left lung. They did a culture and sent it off. It could possibly be the beginning of a pneumonia but we won’t know for sure until we get the culture back. They are also sending off and doing a urinalysis. They called in Infectious Disease as well. That Dr said they will tweak his antibiotics to find which one could help reduce the intensity of the fevers. Whichever antibiotic he begins to show improvement with, she should be able to tell what type of infection he has and its location. They did check his blood this morning for sepsis and all those numbers came back perfect, thank goodness.

Another goal this week is getting his left foot fixed. That surgery is so far tentatively set for Wednesday provided the fevers come down enough and they aren’t worried about infection. I also asked about if/when we would ever do another scan of the area between the collar bone and the pelvis. The last scan we have is from the day of the accident and to me it seems they should have more up to date scans especially since we are starting to find problems/issues in areas that were originally thought to be of no concern. She said yes absolutely! That CT is going to be sometime this week as well. Yay! I also asked if we would ever get any results back from the wrist/hand X-rays that were taken last week. She stepped out, asked the staff where those results were, came back in and said they were waiting on the hand specialist to read them but she would try to get those as soon as possible.

PT and OT came by at 1045am. They wanted to have B sit up on the edge of the bed again. I was opposed and explained what happened the last time and that it was too much too soon especially when he just had his meds lowered and he was all of a sudden able to feel pain that he hadn’t felt before. One of them understood, one of them wanted to try anyways just not as long. I said, why don’t we ask Brayden if he can handle that today. They agreed and we asked Brayden if he wanted to sit up at the side of the bed like the other day. He adamantly told them no. They asked if they could position the bed in a more upright position and do some arms exercises and Brayden said yes. Brayden did most of the exercises on his own with no assistance. He even took a warm wet wash cloth from the PT guys hand and wiped off his own eyes. Super great signs! He continued in a pretty upright position for a few hours. They just now laid him back to a 40-45′ angle.

His temp is at 101.3 right now. They just gave him some Tylenol and said if it isn’t down in a few hours they may give him more. He also has the cool fans blowing on him from every direction.

The rest of the day should be just some more CPAP breathing and medicine/antibiotic tweaking.

We are so appreciative of all the love and support and continued prayers. You all have been such a blessing to all of us. I am so grateful for this little community that has formed from a group that was started to update family and friends and to PrayForBrayden into a place where strangers become friends and friends become family. Where experiences are shared and advice and support is given. We truly are all in this together. Thank you for that!

Love,
Stephanie

Quick Update: 7/30 5pm

Dr Shaw, the orthopedic surgeon, just came back and gave us the run down on Brayden’s CT scans of his ankles and feet. Both ankles are free and clear, no fractures! Yay! Both feet, however, have a few fractures and tiny broken bones on each. The right foot is less severe than the left and will heal on its own. The left foot is a far different story.

Braydens left foot has a displaced Lisfranc fracture. That’s when there are bones that are fractured on the top of the arch of the foot. The second toe has been displaced, it shifted from its natural position, from the big toe. There is a fracture along that second toe. The ligaments between the big toe and the second toe are completely torn. This kind of fracture and tear can cause chronic pain and collapsed arches if not treated quickly. Surgery is always necessary.

Dr Shaw wants to do the surgery immediately to repair the bones, as in tomorrow if B is cleared. From what I understand about this type of injury it usually requires plates and screws to hold the bones in the right places so that the ligaments can heal properly. I honestly don’t know how a torn ligament is fixed though and I forgot to ask ‍.

The Nurse Practitioner just came in to let us know that unfortunately Brayden cannot be cleared for surgery tomorrow. His white blood cell count is down by a little more than half and along with the high fevers the trauma drs just want to err on the side of caution. They just started him on a new antibiotic to be on the safe side. We will revisit the left foot surgery hopefully in a day or two.

Thank you all for the love, support and prayers.

Love,
Stephanie

Update: 7/30 9am

To say that the last 24hours was awful is an understatement. There were moments of rest for Brayden but for the majority it was just pain, struggle, panic, extreme pain and more struggle. It was too much too soon and all at the same time. His body and his brain went through a hugely traumatic event and yesterday sent him into an uncontrollable spiral.

He had multiple panic attacks and storming attacks with high fever spikes throughout the entire day. He would maneuver himself low enough to grab hold of the catheter and try to pull it out. He used his toes to pull at chords also. They had to put the padded mitts on him and it only took a minute for him to free his hand and pull the catheter again. He was lifting his legs so much that he tore open one of the wounds on his knees. He was able to tell us that his feet were in severe pain. Jason and I raised enough of a stink with the nurses and finally they all agreed there was something more going on and they would call Dr Shaw to come look at his feet and knees again tomorrow, which would now be today. Fingers crossed that happens.

Last night he had another really bad storming and panic episode. So bad that they had to raise his meds again and also give him Valium for panic and oxy for pain, dilaudid, and more Valium. He literally wouldnt stop and the entire nursing staff was stumped. It took 3 hours along with my mom (Cheryl) and myself, and 5 nurses to put calm hands on him so that he wouldn’t struggle anymore. They finally have him some presedex and that calmed him down. He has been good ever since. Presedex is clonodine. That’s it! Not even a narcotic! Thank goodness they finally thought to use that.

I asked the head nurse what our main goal is today. She said rest and reintroduce some smaller increments of cpap so he can breathe on his own. If it’s too much we will shorten it. If he’s tolerating it well we may lengthen it. She said for the next week or two this is what we will be doing. Balancing and finding the right meds that work for him, small steps of weaning off the sedation medications, more breathing on his own, figuring out the secondary areas of his body that are causing pain and beginning to address them.

Today I am so grateful for Clonodine. It has allowed Brayden to rest and be comfortable and not struggle through panic and pain. Im also grateful for the nursing staff here at the TICU. They told me and my mom last night that we should get some rest and they promised they would stand watch over Brayden all night long, and they did! Every time I woke up, they were still there. I’m also grateful for all of y’all’s continued prayers and support.

And thank you all for the awesome birthday wishes, messages and prayers as well! An awesome friend sent this Bible verse to me and said it reminded her of me. It brought tears to my eyes. I had never heard of it or at least I don’t remember seeing it before. It is beautiful. Thank you JoJo

Love,
Stephanie

Update: 7/28 4:20p

This is probably the 436,572 time I have tried to complete this update since 10:30am ‍♀️

Last night was better for B but still kinda rough. Multiple episodes, some being pretty easy to soothe him and only lasted a few minutes. Others were much worse lasting longer and just overall harder for the both of us. It hurts a mommas heart to see her baby so afraid and in pain knowing the only thing you can do is just reassure them that they are safe and you won’t leave them. Many of the episodes last night as soon as he was finally settled, I would let go a little too soon and he would tighten his grip, HR would go up a few beats and we would have to start the whole process over. We are calm, we are breathing, in and out. Let’s find 5 things together. We are calm and we are breathing in and out. Rinse and repeat. I think I have finally figured out his pattern though so I don’t let go of his hand too soon.

Brayden had a pretty bad storming episode earlier today. That’s the first one that we literally watched happen before our eyes. His HR spiked up followed by his temp. He topped at 103.2 and nurses were coming in here with the cold fans blowing on him from all directions and cold packs everywhere. It took a few hours but he finally came down and got through it. He’s had a mid/high 99.-low/mid 100. fever all day ever since.

Dr Correa, Bs plastic surgeon came by earlier as well. Brayden has more plates than I originally thought. He has 9-10 titanium plates, the titanium mesh patch and then some titanium screws too. His jaw is wired with this metal arch bridge that is drilled and screwed into the jaw bones ☹️

Dr Correa said that the CT from yesterday looked great, better than he had originally hoped. He did say that he wants to reevaluate the nose bridge area space between Brayden’s eyes. He wants to give it a week or two to let the swelling go down a bit. If he’s unhappy with it he will want to do another surgery right away. He also said that in about/around 6 months Brayden will need a rhinoplasty surgery to build/repair the nasal bridge portion of bones that no longer exist.

So far so good with this new formula! Praise God! His digestive system has been moving things along. He hasn’t had any nasty faces or weird cringes due to belly pain that I have noticed since they started him on the KateFarms Peptide.

Trauma Dr on shift this week also came by earlier. He’s not much for words lol What he did say is that Bub has been through a lot but he’s young and strong. We don’t want him reliant on the vent for an extended period of time but today is too soon to take B off completely.

In order for Brayden to be transferred down the road to TIRR, he has to be 100% breathing on his own and not reliant on the machine to ventilate. From my own understanding of the progression of his healing and the possibility of other surgeries in the near future, I don’t think they plan on taking Brayden off having at least some reliance on the ventilator for another two weeks. If there are more surgeries then I would imagine they would keep him at least partially reliant to give his lungs a break between surgery and recovery. This is all just possibilities though. Nothing is ever set in stone on this journey we are on.

Oh! Two more things. They have been changing Braydens boots every two hours to prevent drop foot. He has what we like to call his comfy moon boots and his winter fur boots. The moon boots give a cushioned break and then the fur boots put his foot in a supported flex. Well during a shift or two the boots weren’t changed out as frequently as they should’ve been so now B has drop foot on his right foot. It’s fixable, it’ll just extend the whole rehab time.
The second thing is the Respiratory Therapist came by today and took out the trach sutures. Let me tell you, that was not fun, for any of us. RT tried to get it done as quickly and efficiently as possible. It still wasn’t quick enough. Bub was very agitated and in pain. Broke my heart to see him so upset and trying to move to get away with tears streaming down his face.

Small steps along the path. This road will be long but we will not waiver. Our faith is strong but continues to grow as we trudge forward through the muck of uncertainty. We may have to stop along the way to regain our bearings but we won’t look back. When we get to where we are going we can take a long breath of relief, thank God for life, friends, family, Faith and the kindness of strangers. Then we can turn around and help the person behind us trying to make it down that same long road.

Today we want to pray for all the people who have sent messages, texts, phone calls, dropped off food or gifts and all of the people who have come up to the hospital to show love and support for Brayden and all of the families. We also want to pray for all of the friends we have made in the Trauma ICU. Going through this along side each other has brought strangers together to become like family. We have been able to become another kind of support system for each other. God works in mysterious ways but He brought all of us here in the TICU together for a reason and I’m glad He did.

Thank you all for your love, support and prayers. We continue to pray for all of you as much as you pray for all of us. We are incredibly grateful to have y’all in our lives helping to pick us up and keep us from falling down when the weight becomes unbearable. Until tomorrow!

We love you all!
Stephanie

Update: 7/27 6:40pm

Brayden has been pretty good today. Been doing a lot of sleeping off yesterdays surgery. Lots of rest and recovery, thank goodness.

Tomorrow they want to start backing off the vent again and letting him breathe more on his own. Hoping and praying that goes well and it isn’t too soon after such an extensive surgery.

Hunnie brought one of his favorite blankets from home so we can let him hold it every now and then and feel something familiar. Something that feels like home. Something that could maybe help his panic attacks not be so bad sometimes. That’s what we are praying at least.

I can’t even imagine what his poor mind, body, and soul are going through. We will just continue to keep praying for healing. Lord knows, Brayden will have to journey through a storm but I find comfort in my faith and I know that my Bubba, HIS Bubba, will find refuge in Him.

Tonight, before Brayden and I go to sleep, we are going to say our prayers. On this night though, we are going to say extra prayers for all of you.
For all of you who have stood by my Bub and loved him and supported him and prayed for him as if he was your own. We are going to pray for every single person who has reached out, read his story, shared his page, donated, prayed, organized benefits and blood drives, put up blue light bulbs, yard signs, made T-shirts and keychains. Everyone!
We are going to pray for the traumatized kids from the movie theater that ran to help not realizing what they would find when they got there.
We are going to pray for the girl that held my sons hand the entire time they waited for EMS to arrive because she didn’t want him to be afraid and alone.
We are going to pray for the EMS for getting him to the ER so quickly.
We are going to pray for the ER nurses, doctors, staff, security and the police that continued to stay outside his room for hours.
We are going to pray for every single nurse, doctor, surgeon, and staff member at this hospital.

All of you. Every single one of you. Without you, my son wouldn’t be here. I am forever indebted to you, though there exists no currency substantial enough for payment. For this, along with your kindness, generosity, prayers, love, and support, for all of this, I am eternally grateful. From the bottom of my heart and to the depths of my soul, may God bless you all!

We love you!
Love,
Stephanie

Quick Update: 7/26 4:10pm

Just spoke with Dr. Correa. He called from the OR. He had questions about Braydens jaw and if hes had any previous orthodontic work. I answered but then asked why and if there was a problem. I was getting nervous! He said absolutely not! Things are going SO great and he just wanted to make sure that everything went back exactly where it was supposed to be. This makes me happy. He’s trying his very best to put all the pieces of my baby back together just the way God made him!
Thank you all SO MUCH for the prayers and love! And while we are so thankful and appreciative for people wanting to donate blood in Braydens name, it’s tying up the Drs phone line. They’ve kindly asked that you all call your nearest blood bank to make that very generous donation. Which make no mistake we are VERY grateful for. Thank y’all!!

Update: 7/24 12:30p

The Drs are treating Brayden for the sympathetic storming. They started his new medication, bromocriptine, this morning. They believe that because they have ruled out any signs of possible infection that storming is the cause of his fevers. Basically sympathetic storming is like having a bunch of browsers open on your laptop and the motor is just constantly running. Eventually the laptop gets hot because it’s being overworked. Braydens parasympathetic and sympathetic nervous systems are battling right now. The parasympathetic is sedated and not moving but the sympathetic is stuck at the moment of impact in fight or flight mode. At least this is the way that I understood it to be.

I put in a request for the Dietician/Nutritionist to come talk to me about the formula going into Braydens feeding tube. I had a deja vu epiphany moment the other day. When B was a baby he couldn’t take regular formula, nor could he take soy or any of the other ones. He was on the super expensive Nutramagen. Even with that he still puked stuff up all the time and had horrible belly/digestive issues. The dr prescribed Reglan, montelukast, to help with that. Well, I have to know all the things so I looked up the feeding tube formula they have him on here. It’s made from Soy protein. Not good for my Bub. They also prescribed him Reglan. Full circle moment! Lol So I’m hoping I can talk to the nutritionist and get his formula changed to see if that will help with the digestive issues.

RT came by and started him breathing all on his own again today. Yesterday B was able to do it for a few minutes but got too overwhelmed so they put him back on the vent about 5 min later. Today, he’s been breathing completely on his own since 11:30 and his O1 has stayed between 92-96, which is great! It’s actually been hanging out at 96 for the past 10 min or so.

We did get an update-ish on Wednesdays surgery. They have a start time of 11am and have blocked out 6-8hours for the surgery. We still don’t know if they are going to be going in sections or trying to do as much as possible in one surgery. Hopefully the Plastic Surgeon, Dr. Correa, or someone from his team will be by later today after they are done with other surgeries or tomorrow morning during rounds.

His night last night was a little better. Didn’t wake up panicking and only had a few choke coughing episodes. They weren’t nearly as bad as they have been so hopefully we are moving on from all of that business. I assure all of you I am making sure that I sleep when I can and I am getting enough of it. I am eating and staying hydrated as well. In fact we had our normal Sunday family dinner up here in the trauma icu waiting room. All the families were there. Minchew, Lyday and Millon. It was great to have all of Braydens favorite people all in one room, eating and talking and laughing and telling fun stories about our Bub. We are all so looking forward to the new memories that we get to make with him, Thanks be to GOD!

Thank you all for the continued love, support and prayers. We wouldn’t be where we are if it wasn’t for all of you!!

Stephanie
#PrayForBrayden
#StrongLikeBrayden
#FightLikeBrayden

Update: 7/23 10am

Brayden continues to run a fever. They have it under control and it just hovers between 99.5 and 100.5. The Trauma Dr just finished her rounds and said that he has been on the big 3 antibiotics for long enough now that if it was an infection it would have started working by now. They are thinking now that the fevers have more to do with the severe brain injury that he sustained. They will start him on a medication today in hopes that it will help with that issue.

They just gave him meds through his feeding tube. Hopefully the new digestion medicine they started him on yesterday will have taken affect so we don’t have to start the whole process of draining his stomach again. They will reintroduce food later on today but only in a small increment to see if he tolerates it.

They want to keep Brayden pretty sedated so he can rest until the beginning of facial reconstruction surgery this Wednesday July 26. Even with the heavy sedation he fights through and tries to wake up. We keep trying to remind him to relax and save his strength.

Last night something very unexpected happened. The Respiratory Therapist was in the room to clear and suction etc and Brayden started getting agitated. I grabbed his hand and told him Mom was there and it was ok. He opened his eyes and looked at me and mouthed ‘i love you’ and I said I love you too buddy but don’t try to talk because you could hurt yourself. He was adamant though and tried anyways. He said, mom! And I looked at him and then looked at the RT Sophia and we were both amazed! Then he said Mom again. I told him I’m right here Bubba and I’m not leaving. Well, we ended up having a full blown conversation!! Sophia the RT witnessed the entire thing and told me that she has seen people with a trach try to talk but only make noises or maybe a word here or there. She said in all her time she has never seen anyone have a full blown conversation let alone in Brayden’s condition and especially so soon after the trach was placed.

In our conversation, Brayden was able to tell me that he knows he’s in the hospital but doesn’t know why. He is in pain, everything hurts. This part hurts my heart the most. He told me he is having panic attacks. Not one attack. Attacks. After he said that I grabbed his hand and he squeezed really hard. I looked him in the eyes and calmly reminded him what we do when we have a panic attack.
We need to be calm. Are you calm? He nodded. We need to breathe. Are you breathing? He nodded. Now we need to find 5 things. Find something you can hear, something you can see, something you can touch, something you can smell, and something you can taste. Did you find your 5 things? He nodded. I asked, are you calm and breathing? He nodded and was able to relax and bring his heart rate back down from 138+ to 100. When he was finally relaxed and vitals back down to normal I told him how wonderful it was to hear his voice and how much I miss him and love him. In reply he gave my hand 3 BIG squeezes, translated to I Love You. We used to do that when he was little and I had forgotten about it until last night when he reminded me.

A full blown conversation. 3 BIG squeezes. He’s in there. He will make it back to us. Baby steps.

Love,
Stephanie

Quick Update: 7/21 8:30

Trauma Dr just came in and gave us an update on some things we were waiting on.

MRI results –
GREAT news- There are NO fractures in Braydens C-spine. Yay!

NOT great news- There are torn ligaments between C4 and C5.

As of right now he will need to stay in the C collar for 6 weeks to allow the ligaments a chance to heal. After that, B will be in a much better state and the Drs can get a more accurate feel/read on just how injured the ligaments are. At 6 weeks he will have hopefully had most of the structural face reconstruction surgeries completed and won’t be so reliant on sedation as much as pain meds to manage his post op pain. They will be able to ask him about pain at the injury site and also do certain tests to determine how bad, or not, the injury is.
If they determine that the ligaments are damaged worse than they thought, then we are looking at surgery to correct that also. Most likely that surgery would be before the rest of the facial surgeries are completed. She also said that even if they determine that he doesn’t need surgery now because for the most part the ligaments have healed, it is very plausible that he will need surgery at a later date down the road. For now though, he will wear the collar for 6 weeks.

We will hear from Dr Correa, the plastic surgeon, either Monday or Tuesday morning so he can go over the first steps in the skull/ facial reconstruction that begins next Wednesday 7/26.

As for wrapping up this week and looking ahead to this weekend, we will be here and Brayden will be resting, relaxing, and recovering. He needs all the rest he can get for all these upcoming surgeries.

Oh! Just a few minutes ago the Respiratory Therapist came in to do a breathing treatment and B started having a choke coughing fit. (These are a thing and super scary for him) I hopped up and grabbed the tips of his fingers and told him I was right there, don’t be afraid, its mom holding his hand. When he heard my voice he opened his eyes and looked at the person next to him, the RT not me. The nurse saw him looking confused and said, Brayden can you find your mom? He squeezed my hand and I squeezed back, kind of like an is that you mom? And I replied yes! So I started talking and said, I’m right here Bubba. He moved his eyes over til he found me and then he pulled his hand out of the cast and grabbed hold of my hand so tight. it completely melted me

He brings me so much happiness. He brings so many people happiness! I have yet to meet a person that has met Brayden that didn’t instantly love him.

Thank you all for the Prayers! We are all doing our best to pay it forward in prayer and gratitude. We have met all the families in our little trauma icu wing of the hospital. We give each other updates, pray for and with them etc. Our Blessings are their Blessings and we all celebrate the little victories together, which is really something special.

So, here’s to MORE good days just like THIS! Brayden really is Gods living, breathing Miracle!

Stephanie

Surgery #1 Update – 7/21 12:45pm

Dr. Shaw, the orthopedic surgeon, and his team came in bright and early this morning and took Brayden back to the OR for his very first surgery to reconstruct his body. At 8:01am the OR nurse text us saying they had just started the left knee reconstruction. At 10:19am we got a text saying left side went great and they had just started the right knee reconstruction. At a few minutes before noon we got another text saying they just finished up the right knee and they were about to bring him back up to the room and that BOTH surgeries went wonderfully!

Dr Shaw came to the trauma icu waiting room with new scans in hand and showed us Braydens new knees. They look amazing! Let me tell you, for someone who is a perfectionist and all about perfect lines and symmetry, when I saw his new knees I was SO impressed! They are beautifully constructed! His attention to detail was not lost on me! I appreciate that so much.
He explained everything in detail and was really an awesome Dr. It was such a sigh of relief on this long road to recovery. He did say that because the trauma to Brayden’s knees were so extensive, the left being far worse than the right, that even the cartilage in between the knee bones and the patellas were greatly affected. He will most certainly have bad arthritis and there just isn’t a way around that. If/when this does happen down the road, he was thinking later in life, then Brayden would be looking at knee replacement surgery. But, for now Dr. Shaw said not to worry because for where B is in life, he is good to go! With his fancy new knees!
Brayden will be in locking knee braces for the next 4 weeks. Both knees cannot be moved at all during the recovery process. Dr. Shaw also reviewed Brayden’s previous ankle X-rays and he’s confident that the areas that looked like they could’ve been fractures on both ankles are not fractures at all. Thank goodness his ankles are completely unaffected! Phew!

For some of y’all that know us, me and Brayden, you might know that one of our favorite movies is Forrest Gump. Leading up to the surgery today I have been telling Brayden how exciting it is that he is getting new knees because he will be able to run and jump so high! And in my best Forrest Gump impression I told him, his momma calls them his special knees because everywhere he went he was running!