Charles officially came home today around 11:30 am. He is getting settled into his wonderful new room and is just finishing lunch. He was met by family, his respiratory specialist, one of his nurses and beautiful flowers from Julie.
We would like to thank National Response Solutions in Jasper, Ga. for providing medical transport today and for ongoing transport until we secure a vehicle. In addition, they are helping with medical supplies for Charles. Specifically we want to thank Chris, Duane, the COO, and Director of Marketing Hal from National Response Solutions.
We would also like to thank the following:
Jason Sarvis for coming out last week to mount Charles' tv.
104.7 The Fish for selecting Charles as their Random Acts of Kindness highlight last week, their auction of Third Day concert tickets and backstage passes last month all to benefit Charles.
Bonnie's Cleaning Service in Woodstock, Ga. for such a remarkable job on our parent's home yesterday!
First Baptist Church of Lilburn for their crew of men who helped last month on the renovations.
Brian Wilson, Ingrid Ott, Mike Johnson, Antonio & Meghan Aguilera and various others who helped with renovations.
Sixes Tavern, The Armory, Craze Tavern, Canvas Cafe', Crossfit Refuge for all hosting benefits to raise money for Charles.
The Mudfreaks team for their never ending support of Charles.
If we have left anyone out by name, know that we are so thankful and blessed for all you have done.
Lastly, thank you to everyone who has donated their time, resources, money, knowledge thus far as well as your prayers!
Charles asked that write a note of thanks on this site to everyone who has been praying for him and our family, those who have volunteered their time, money, donations all to help. He started checking his email yesterday and he read so many emails and facebook comments, posts from friends, friends of friends, etc. since his injury, He said that he is so touched by all the wonderful things people have had to say about him, he even responded to some of these himself. Don't be surprised if you see a comment back from him!
Charles would like to thank Canvas Cafe and everyone who showed up to support his benefit last Saturday. He was amazed at the stories that everyone has told him about the crowds, the auction, t shirts sold, etc. In addition, he has sampled a few of Canvas' wonderful menu items.
Charles will be going in today for a small procedure to change his catheter to one that will be inserted into his bladder via a small incision in his belly. This is a minor procedure and he is expected to recover within the same day.
We hope that you have been to the facebook page and seen photos of Charles recently posted. So nice to seem him clean shaven and with a haircut.
Please check out the page in order to see all the wonderful things happening and how you might be able to help. We regularly update with items we are still hoping to get for the house, and now assistive devices so that Charles can resume some daily activities like browsing the web, checking his bank account, making calls to everyone, sending emails, and just plain watching tv.
A lot of people were pleasantly surprised to see Charles commenting/posting on his facebook page yesterday! These assistive devices we are looking for are exactly what he is training on at Shepherd right now to be able to use once he comes home.
Please come out tomorrow night to join us at Craze Tavern in Duluth for a Charity Poker tournament and raffle to benefit Charles.
Thursday May 23rd at 7:30pm
3312 Peachtree Ind Blvd
Duluth, Ga. 30096
Thank you to everyone for all your wonderful support!
Charles' has been eating regular meals for several weeks now and maintaining a healthy weight, so his feeding tube was removed earlier this week and he is healing well inside and out.
Charles finally got a haircut today! He also went on his first outing today to the movies and saw Iron Man 3. He was really wanting to see this movie and he was very excited to do so and Mom says he did wonderfully and really enjoyed the movie.
Charles has been working with the Assistive Devices therapist for the past couple of weeks and has been using the Dragon naturally speaking and Blue Ant phone commands programs. On Monday he was even able to make a phone call, get online, and "type" up an email. We are working with the therapist as she puts together her full recommendations on what she thinks he needs and what would be optimal for us to purchase in the way of software/hardware for him to live at fullest capacity upon discharge. Assistive device technology is not covered by insurance so anything we want we will need to purchase either through Shepherd or hopefully via a donation.
His wheelchair fitting took place yesterday, a long 2 hour process. But they now have all they need to begin production, (which will take 8-12 weeks) but they will provide him with a loaner chair upon discharge until his permanent chair is ready.
The van evaluation was completed Monday and now the family begins the search for a handicapped accessible vehicle.
Lots of exciting things going on and renovations still continue on the house as everyone prepares for Charles' discharge on May 28th.
Please join us this Saturday if you can at Canvas Cafe and Bakery in Marietta from 7am-9pm for the benefit and silent auction for Charles.
Just wanted to remind everyone to come out on Saturday May 18th from 7am-9pm to Canvas Cafe and Bakery in Marietta for the Charles Tumulak/Fight for a Warrior benefit and silent auction.
Sandra Day and Canvas Cafe have graciously taken it upon themselves to organize and put on this amazing event in which 100% of the proceeds will go to Charles. Anything you purchase, all monies raised from the silent auction will all help for housing and medical costs for Charles.
Please come out and support Charles as well as all of the wonderful companies that have donated items for the silent auction: Canvas Cafe, The Melting Pot, On The Border, Chili's, Home Depot, Mountasia, Monster Mini Golf, Joe's Crab Shack, Pain Solutions (Braves Tickets), The Kipling House (craft workshop), Gone With The Wind Museum, and The Southern Museum.
If you are or know a business that would like to contribute items towards the auction, please go to facebook.com/canvascafe for more details.
Charles got his neck collar off Monday morning! The collar, while useful, has been extremely uncomfortable for Charles, especially while sleeping. The doctor said that it will take him about a week to get used to holding his head up, as the collar has been doing this for him for the last 6 weeks. This also means that he can finally get a haircut.
Charles continues to do well with speech therapy, even taking calls via speakerphone in order to talk with people. Mom will randomly call people in the family so that he can talk with them. On Sunday, he even got to tell our Dad "Happy Birthday" and "I love you". This was the first time since the accident that our Dad has heard Charles speak-what wonderful words to hear!
Today Charles drove his chair to and from therapy with his cuff down, a first, and did great. Having his cuff down is the way that speech therapy allows him to talk by allowing air to pass around the trach tube, through the vocal folds and out of the oral cavity. This can sometimes lead to shortness of breath, feeling lightheaded or dizzy when first attempting, but you build up over time the ability to do so for longer periods. Driving his chair to and from therapy while at the same time having his cuff down is a great improvement.
We are still looking at having his feeding tube removed later this week as well.
So much work has taken place at our parents' home you almost wouldn't recognize it! So many wonderful people to thank for their help and donations to the home, please check out the Facebook page for Charles- facebook.com/ForChuckStorm to see photos and businesses that have donated as well.
We want to make sure we thank Brian and Ingrid who have pretty much run the renovations and have put in 14 hour days in addition to driving back and forth from the East Cobb area to Lilburn each day.
Antonio took the whole week to help out each day in any way needed. Greg White, Mike Johnson, Larry Ellison have been on hand as workers as well. Denis and Dave Recchia arrived in town Tuesday and have been hard at work.
Thank you to Fiserv, the Rhodes and Feddersen families for providing lunch and dinner this week for all those hard at work at the house.
Charles is working hard everyday and pushing forward. Doctors are looking to remove his peg (feeding tube within the next week), he has been doing amazing during speech therapy this week. He spoke for about 3 hours yesterday and today they were leaving his cuff leak open for most of the day unless he felt short of breath or lightheaded. I (Leilani) had the chance to visit for a couple of hours this morning during speech therapy with my nephews Finnegan and Varrick. Charles was talking wonderfully, speaking in 5-6 syllable words/phrases in one clip. He held a conversation with both of his nephews which consisted mostly of how are you doing buddy?, how are you dong Uncle? I kicked your seats in your car Uncle, I'm going to kick your seat (Charles saying this to the boys), Uncle watch me dance, Uncle is talking to ME Finnegan, not you! You get the idea. They loved hearing him talk and he loved talking to them.
They went to play in one of the family lounges with their Nana and when they came back, Uncle Charles had left for and x-ray and OT, and they kept asking where Uncle Charles was, when is he coming back, I need to say goodbye. They got their chance as we ran into him near the elevators and they danced for him a little more and said I love you Uncle, see you tomorrow.
Our entire family is truly blessed for the outpouring of support and prayers from everyone during this time, thank you and keep the prayers coming.
One month in and everyone keeps moving forward and Charles is continuing to make some progress as far as eating regular meals and better learning to operate different devices via the sip and puff method. We have learned that the anticipated discharge date from Shepherd is May 28, 2013. In addition, we have been told that the average cost for this length of stay at Shepherd is roughly $75, 000.00
At the moment, Insurance will cover a portion of his expenses but not all of them. Right now we continue to make our parents home handicap accessible, we are still looking for a van with a wheelchair lift, and we will still need to have 24 hour hired care in addition to the specialized wheelchair Charles will need. We have already started some of the work on the house, but are gearing up for the heavy stuff starting this weekend and lasting until May 5th. We pray that we will be able to get it all finished within this time frame and ready for Charles when he comes home.
These are just a few of the items that we are aware of at this time. We will continue adjusting the donation goal as we gather more information about the care and necessities Charles will need going forward.
Again, the family and Charles cannot thank EVERYONE enough for the donations and prayers.
Charles is still doing well eating regular meals, so much so that the nutrition specialist has decided to limit his tube feedings to at night. He has been eating about 1500 calories/day from his regular meals and she is very happy with that progress.
Charles "drove" his wheelchair to the therapy gym again today, but this time took the long way around the floor. He did a great job, only needing to backup once to make a turn! Unfortunately, this also wiped him out and his bp dropped some and he felt lightheaded.
He still got in all of his therapy today included speech. He spoke again for 30 minutes, but he didn't sound as good as he did on Tuesday and that discouraged him some. He and his 3 year old nephew Varrick spent most of his speech time carrying on their own conversation. Charles would say I love you Varrick, and Varrick would say I love you too Uncle Charles, then Charles would respond with I love you too Varrick, and you get the idea. They said what's up buddy to each other, what are you doing, how are you doing. From then on, whenever Charles would say anything, Varrick would ask-is Uncle talking to me, be quiet, I can't hear him. It was one of the sweetest things. Varrick asked to sit in his lap, but I didn't let him only because I was worried about the possibility of him popping out his vent. He did stand next to him and rub his hand and arm while he watched Scooby Doo.
We are gearing up for a hard days work at our parents home this weekend and are hoping that the rain holds off. Please pray for good weather!
We were able to spend a good deal of time today with Charles and I (Leilani) even got to feed him lunch, it was so wonderful to watch him eat and him saying how good everything tastes. I went to the therapy gym today with him for stretching. He even had his first driving course in his wheelchair. To this point he has only been controlling his weight shift in the chair, but today he started learning how to actually drive it, steer it up and down the hallway! It was hard, he got frustrated, but it was so awesome to see him controlling his own chair.
The speech therapist worked with him twice today on using the cuff leak (releasing some air so that it goes above the vent and into the vocal cords) to talk. Charles spoke for about 30 minutes off and on. He hummed, he sang Happy Birthday, he would ask for what on his plate he wanted me to feed him, he said hello, I love you, thank you, what's up Barb to his Case Manager and that he sounded like Darth Vader! Even though it is still the long, breathy, robotic sounding voice, you can still hear his actual voice in there. I cannot say how much we love hearing him talk. The speech therapist and nutrition director remarked and what great progress he has made just since he started eating.
Charles asked me specifically to thank everyone who we have been updating on both this site, the facebook and page and some personal emails that we all may be sending. He says "thank you for all the support you are giving to us, him and for all the prayers"!
The speech therapist has been working with Charles over the last week on swallowing. He progressed from ice chips to drinking water to today-he ate pudding, fruit, a cheeseburger and fries! If this continues, he could eventually stop using the feeding tube, although he would keep it as a backup. His spirits have been good the last few days and we are very thankful for that and his continued progress.
Sunday - Charles has been increasing his time in his chair to about 9 hours each day. Sunday is his day of rest, so he is taking full advantage of the quiet time. We talked about positive thoughts and he said that he has felt much better the last two days and has been praying quite a bit.
He humored me by doing some visualization exercises where he closed his eyes while I talked about him seeing himself breathing and visualizing his nerves and muscles.
His upcoming week is stuffed with every type of therapy possible and we continue to hope for progress at every turn. This week also marks the start of construction at the Lilburn house and there is plenty of work to be done so please don't hesitate to email, message or call if you can help.
Thank you to everyone who is supporting Charles and our family and for keeping him in your prayers.
Thursday-Charles spent 7 hours in his chair, a new record! They hooked up a portable vent on the back of his chair today so that tomorrow during PT and OT he'll be able to travel to the therapy gym.
Charles indicated today that he would like to get a haircut, so we are working on that for this weekend or next.
Charles used his cuff leak to speak to us today for a short time. He said "Hello", "I love you" and that he liked "saying I love you and you can hear it."
Charles had a good day today. He looked much better than yesterday and got moved back up to his regular floor, but a bigger room with two big beautiful windows to look out.
He was able to sit in his chair for 4 hours today, but unfortunately we missed it!
Wanted to say thank you again to Sandra Day for organizing an amazing bake sale and lunch at Charles' office yesterday and all those who donated goods, services and just their time.
Just a reminder that tomorrow is the Bake sale and lunch benefit for Charles. Please stop by Pain Solutions Treatment Center at 400 Tower Road, Suite 350 Marietta, Ga. 30066 from 8am-4pm!
Charles had a rough day compared to the last several days. He wasn't able to sit in his chair today as he's been experiencing some trouble with his bp being too low. He spent most of today in bed and was in and out of sleeping most of the day. Naturally he is discouraged, but we along with the nurses assured him that tomorrow would be better. We told him that some days are going to be harder than others, but we keep pushing forward towards a better tomorrow. The doctors will tweak a few things and we pray that tomorrow he bounces back.
Charles had an ok night. His sleep was not constant, waking up every now and then. He took a small step backward today and became discouraged. He could only stay in the wheelchair today for 1 hour 45 minutes. He was having some issues becoming lightheaded after he shifted his seat back to an upright position. All his stats were normal and they adjusted the settings to try and make it easier, but even when they began manually shifting his chair, he still had trouble. Eventually he just went back to his bed and naturally he was upset that he wasn't able to stay up as long or longer than yesterday. The nurses explained that sometimes you will take a step back, but you pick it back up the next day and move forward.
He begins his first full day on the SCI floor (Spinal Cord Injury) and his schedule is full most of the day. We bought him more clothes so he could stay out of those awful hospital gowns. More family will be in this week and are excited to see him now at Shepherd.
We are gearing up for work to start on our parents' home in a couple of weeks and are organizing and lining up all the individuals, groups, companies that have offered their services, labor, materials, etc. We are so blessed to have all these people reach out to us and extend their expertise or time. Jim-n-Nick's BBQ will even be catering lunch one day for all the people helping! We are still coordinating for people to help with labor or donate materials. In addition, we are looking to get a large shed to house the items we have now had to clear out of my parents garage if possible. Please visit us at http://www.fightforawarrior.org
or on our facebook page facebook.com/ForChuckStorm if you can help.
Charles had family visitors on Friday and Saturday and looks good. They fitted him for his wheelchair and he was actually able to sit in is chair for 2.5 hours today! This was a big improvement from Friday and they will continue to get him in the chair as much as possible to build up his endurance for being able to sit in the chair. He is using the sip & puff device in order to shift his weight in the chair. He hears a bell go off in timed increments that lets him know it is time to shift. Doing this for an extended period of time still wears him out, but that will improve with time.
He worked with the Speech therapist on swallowing ice chips, a start to seeing where his swallowing capabilities are at this moment. He was very encouraged that he was able to swallow a small amount!
He says that the doctors and therapists continue to work him hard, but he is glad. Charles had his chest tube removed as well on Friday, his previously collapsed lung now healed and doing better. Charles is now taking all breaths on his own!!! He is still on a ventilator as a backup, but he is breathing on his own at this point. It is not breathing like you or I know; it is still severely limited, and he does tire easily when they are cleaning his throat and remove the vent or after using the sip & puff devices, but they will continue to try and wean him off the vent completely.
While family was visiting today we met a couple of young men on the same floor, Christian and Bobby. Both had injuries similar to Charles and had made remarkable improvements while at Shepherd. They both asked about Charles, his injury, his family, what kind of person he was before the accident and stated that they would pray for him as they prayed for everyone in the hospital everyday. It was such a pleasure to meet these young men who were able to offer a glimpse of what we and Charles will encounter while at Shepherd and with life in general with his injury. Bobby was working towards attending his prom in Charleston in the next few weeks. They both said that they would "roll by" and check on Charles when we were not around. We promised as well to visit them when we were around.
We spoke with Charles today about the friends and coworkers who wanted to come to visit him starting Monday. He said that he was not ready yet. He asked if he could have more time to try and prepare and be ok with other visitors. Of course we told him that whenever he felt ready, we would arrange for them to visit. His spirits are up, but understandably there is a lot he has to work out mentally, and he just isn't prepared yet for more visitors. We will let everyone know via updates here when he gets to that point. Also, if you have contacted me personally, I will let you know personally when he is ready.
Thank you for your continued support!
Charles and I (Leilani) were successfully transported this morning from SC to Atlanta with no snags. Charles is settled into the Shepherd Center ICU and I met with each of his doctors, nurses, therapists, etc. It was a whirlwind of a first day, but already progress has been made. They placed a cuff in is ventilator that allowed him to actually speak, (not so much speak but very breathy words and not his normal voice) the words "hello" and "I love you" to me. This is just one of the many things that they will work with him on improving. It is possible that even if he stays on a ventilator permanently, he could learn how to talk.
They plan on having him out of bed and in a wheelchair Friday. He already had his speech, occupational, and physical therapist come by to work with him just in the time that I was there today! While they encourage visitors, they strictly limit it to evening hours as during the day he is going to be working full time with therapists of all different kinds. After all, his sole purpose in being there is to rehab as much as possible and learn how to do normal things in a new way.
I have a meeting with his case manager and counselor tomorrow morning, in addition to taking care of more paperwork.
Immediate family only may start visiting Thursday, but we have been asked to not allow any other visitors at least until Monday, and again they will be restricted to evening hours so that he can work on rehab during the day.
My mom, Nicholas and I were able to talk with Charles for about 20 minutes at around 10am after my meeting with his SSA Counselor. We were then booted out because OT was there to start working. His respiratory therapist had already been in that morning working with him early this morning.
Charles said he had on ok night and he was looking really good. Since he arrived at Shepherd yesterday, he has asked about "things" in everyday life that he used to think about. He asked me to leave his wallet, his backpack with his laptop "jut in case" he needed them. He asked me today for a phone, "just in case I need to call you". I asked him if he was thinking about these things because he is thinking about life beyond Shepherd, and he said yes. We talked quickly about how he had his mind focused on normal life after Shepherd. Needless to say, he is positive and focused on rehab.
He was working the TV himself today via a sip and puff device, although he said he wasn't that good at it yet. Ever the overachiever, Charles was a little upset that he had not mastered it in less than a day.
We brought him clothes as once he gets in his chair tomorrow they will start to allow him to wear clothes instead of a gown. We have so much faith that he will improve and even if he is limited compared to what he used to do that he will be able to resume everyday activities, just with assistive devices.
Just want to remind those outside the family who wish to visit to please coordinate by sending an email via his website or to firstname.lastname@example.org
Just let us know in the email your name, how you know Charles and the date/time you wish to visit.
Thanks for your continued support!
First off - sorry that we didn't post an update yesterday. The day was just a bit hectic.
Charles is settled in at Shepherd and has already started on his rigorous rehab/recovery schedule with over 16 team members dedicated to helping him achieve the maximum outcome!
The next phase of fighting for Charles begins now. We are looking at undertaking and completing the renovation of our parent's home during 4/30 - 5/6.
An idea of the items we are looking for: lumber, sheetrock, bathroom fixtures, flooring, mini-split, hvac, plumbing. We will need it all. Email, send us a message on Facebook or at: fightforwarrior.org or call!
If you can come by to help at any time during the above dates, please contact us and let us know.
Thank you for continued support Charles and our family!
Tuesday morning-Charles had a very restful night of sleep, even sleeping 4-5 hour stretches at a time! Today is really just a day of paperwork for the doctors and his social worker, for Charles it is just relaxing and waiting for tomorrow. The flight team is scheduled for 8:30 am to begin prepping Charles for transport. We will let everyone know once visitations can start as most likely he will be in Shepherd's ICU for a short time.
Monday afternoon-the repositioning of the lead in his pacemaker went well. He is resting well. Transport is now set for Wednesday morning! By next Monday, we will start to entertain getting some visitors outside of family.
There seems to be some confusion in the earlier post that Charles was moving his toes. To clarify, he has not moved his toes on his own. His body is having some spasms causing his toes and feet to involuntarily move. This is good because it still means that things are firing in his body, therefore there is the possibility that he might regain some movement, but he has NOT regained any at this time.
Almost lunchtime Monday. Charles slept off and on all night, but was feeling good this morning. They are getting ready to take him back to the cardiac cath lab to reposition one of the leads on his pacemaker. All of his doctors have been in to see him this morning and all are clearing him for transport tomorrow. We have his Shepherd case manager already moving, and it is now just a matter of paperwork and securing transport for the flight home to Atlanta tomorrow. Charles' toes have been moving again today and he lit up when he saw it! Please continue to pray that he will be transported to Shepherd tomorrow. While we know that there are so many of you in Atlanta who want to come and visit, we are asking that you give him a couple of days to get into the routine at Shepherd before visitors outside of the family start coming in to see Charles. Shepherd encourages visitors, we just don't want to overwhelm him all at once. You can always send an email via his website in order to speak to a family member about coming to visit once he is back in Atlanta.
Thank you all again for all of your support!
Saturday night, Michael and the other Mudfreaks came by to visit after finishing a race in Ga. that morning. It was a quick, but much needed and appreciated visit for all as most of them had not seen Charles since the accident 2 weeks ago. It was wonderful to meet these Mudfreaks that Charles and Michael talk so much about-they have an amazing energy and it is easy to see why they enjoy their company so much. They talked about the tribute that was held before the race Saturday morning and how they ran into a former colleague of Charles' from his old job who was running the race in Charles' honor.
Sunday afternoon, Charles is sleeping a lot. After a restless night, he slept this morning for almost 4 hours without waking! He wakes up every now and then and talks briefly, but then is relaxed enough to fall asleep again. When has woken up, he has asked for Nicholas a few times. Nicholas is comfortable enough that he is his normal silly self; dancing for Uncle Charles, trying to push buttons (literally) and blowing up the protective gloves! Needless to say, it has been fun filled times for the short periods he is awake. All the doctors have made their rounds and still feel comfortable that Charles can come home Tuesday or Wednesday.
As the family moves forward and Charles is getting closer to being moved to the Shepherd Center in Atlanta, the family is getting a clearer picture of the cost associated with what it is going to take to care for
Charles. At the moment, Insurance will cover a portion of his expenses but not all of them. Right now we know our parents house will have to be made handicap accessible, we will have to have a van with a
wheelchair lift, we will need to have two 24 hour caregivers a day and Charles will have to have a specialized wheelchair. These are just a few of the items that we are aware of at this time. We will be
adjusting the donation goal as we gather more information about the care and necessities Charles will need going forward. Again, the family can't thank EVERYONE enough for the donations and prayers for Charles.
It is Saturday now, and the pacemaker has been in for a full day. He is doing well and each of his doctors that have come by to check on him have stated that he looks good, stats and vitals look good and that as long as he continues this way, we can start paperwork for transport on Monday, meaning he could be in Atlanta Tuesday or Wednesday. Please continue to pray that he will stay the course and make his way home soon!
Charles had a better night and was able to get a little more sleep. He had his permanent pacemaker placed today and he is resting. So far, all of his doctors are pleased with his progress and stability. They will continue to monitor him over the weekend and if all goes well, we are looking at transport back to Atlanta by Wednesday! Please keep praying that Charles will continue to stabilize and progress this weekend and Monday when all of his doctors will together weigh in on his ability to move to Shepherd.
Throughout the night, Charles mouthed that he needed to move. So I would rotate around moving his arms, hands, fingers, legs, feet, toes. I would move them so that he could see them as well. Even seeing them via someone else's doing I think is helpful to him. He asks if I can sit him up, and I have to explain that right now I can't because he cannot hold his head up, his neck is not strong enough. He sometimes mouths that he is scared, and asks me to hold his hand. I hold his hand and tell him good, uplifting things to make him feel better. This is why getting him home is so important. Getting him to Shepherd will be the start of his rehab and then he can feel like life is moving forward. - Leilani
Charles had a good night, but not a lot of sleep. When they removed his chest tube, that combined with the pneumonia he is fighting has made it difficult for him to breathe at times. The problem is that he is trying to fill both lungs now, instead of just one. After numerous chest x-rays yesterday and this morning, the doctor decided to replace the chest tube to make it easier for Charles since the pneumonia had not reduced.
We are still looking for the permanent pacemaker to be put in tomorrow, meaning that if everything else continues to improve we can look at getting back to Atlanta early next week. This is so vital to Charles right now as mentally he needs to be home. He keeps mouthing that he is ready to go home and when can we go home. He understands all the things we are waiting for to be stable in his body, but it is nonetheless tough for him.
He hates when I leave his side, so I just sit there with him. I talk to him, watch tv with him, pray over him, read to him, tell him things that people have called, emailed, or text me about to pass on. Please keep praying that his body will heal enough to get him home as soon as possible!
At noon they took chest x-rays and the pneumo hasn't cleared, even though it isn't any worse. Doctors are still concerned about his white count, so they are holding off on placing the permanent pacemaker until late Thursday or Friday. Other than the infection, his vitals are all good and that is still progress towards having him stable enough for transport. Charles is understandably a little disappointed about the delay, but he knows that he must be stable before we can move forward.
Good morning! Charles had a good night. His temp was slightly elevated late yesterday, but never rose to the point of a fever. However, his white count is just outside the normal range and this concerns the doctors. They will continue to monitor his temp, will take chest x-rays at noon and re-check his white count and then will decide whether to put in the permanent pacemaker today as planned. We are really hoping so, as this puts him one step closer to Shepherd, and this has already been delayed once before. Charles is mouthing that he is ready to go home, he wants to go home. He asks for us to sit him up, move his hands and arms. We know that mentally he is ready to get moving and into rehab and that is great! Please continue to pray that he can be stabilized enough for transport, that is what we are working towards right now.
Again, the Tumulak family can't express in words the gratitude we have for everyone who is helping in all ways whether it is financially, emotionally, or with other kinds of support. This last week has turned all of our lives upside down. You never know how you would react to a situation such as this until you are in it. Some of the updates on Charles have confused a lot of people. We have been fielding a lot of questions about Charles's progress and what we're am about to say will give everyone a clearer picture of how Charles is doing. Charles is not able to speak, he is able to smile and mouth words. He has no movement below the neck. The family has been trying to read Charles's lips; it has been frustrating for all involved since they can't always understand what he is saying. Charles had a temporary pacemaker put in last Monday in order to stabilize his heart rate. They took it out late in the week to see if he could stabilize on his own, which he hasn't been able to do. He also has not been able to breathe on his own. He failed the breathing test late in the week. Over the weekend Charles has taken a turn for the worse. When the nurse was cleaning his trach Charles coded twice. He was revived very quickly; however, his heart rate continues to not be stable and he took a couple of steps backwards in his stability. The doctors put the temporary pacemaker back in and if all goes well will put in a permanent pacemaker on Wednesday. Charles has also developed pneumonia, which is a common occurrence with patients who have a trach, but it isn't going to do anything to help him it is making him worse. At the moment Charles is heavily sedated to allow his body to rest in preparation for the surgery on Wednesday for the permanent pacemaker. The immediate need is to get Charles stable enough to transport to the Shepard Center in Atlanta. The Shepard Center in Atlanta is a rehabilitation facility; it will teach the family how to take care of him and will work with Charles on how he can manage his life with using his eyes and mouth to control a wheelchair and anything else that a person in Charles's situation can handle. Charles has Kaiser Insurance and they will provide medical transport as long as it is to a facility in Georgia. The cardiologist that met with the family over the weekend told them to be prepared for the fact that Charles will be a quadriplegic and will have a breathing tube and feeding tube for the rest of his life. With his type of injury and the type of breathing tube he has he may never be able to speak again. This is what we are looking at in terms of caring for Charles, the family will need a vehicle to transport a wheelchair, and we will also need a handicap accessible home. The type of wheelchair he will need is one with a tube he can blow in to move him around, the wheelchair will cost about $400,000. The Shepard Center has said Charles will have to have two, 24 hour caregivers at all times, one of which has to be a CNA. The cost of just 1 caregiver per month is going to cost about $5500 a month. We have been unable to locate a facility in Georgia that will take a patient with an injury such as Charles because he has to be on a ventilator full time. The family has to have a plan in place to take care of Charles before the Shepard Center will take him. Since we haven't been able to find a facility the family has to make preparations to take him into one of their homes. No one has a house that is handicap accessible or that can be made handicap accessible. The Shepard Center anticipates only keeping Charles about 6 - 8 weeks. This isn't much time for the family to make these changes and prepare to care for Charles. The donations given will be used to help with this along with getting a vehicle that can manage a wheelchair. While this is the reality right at this moment there is still HOPE. Charles is young and VERY HEALTHY!! He has a lot going for him especially the love and support from his family and so many other people. Please continue to give and most importantly please continue to keep Charles in your thoughts and prayers!!!
It is officially a Monday. Charles has pneumonia which is stressing out his lungs and heart. Apparently, catching pneumonia goes hand in hand with being on a ventilator.
He had a very rough day yesterday and gave us a scare. He will be sedated heavily and hopefully get the rest he needs to help his body.
Other challenges is that while being on a ventilator, he can't talk. He mouths words/sentences and we all do our best to read lips. Sometimes we have to start back at the old standby and go through the alphabet - which he hates! You can see his BP rising as he gets frustrated but we are doing the best he can and I know he knows this.
One day at a time. Thanks everyone for your continued support, positive thoughts and prayers.
Charles had two minor episodes early this morning where his heartbeat dropped significantly and he flatlined. The doctors have decided to replace his temporary pacemaker with a permanent one to help keep him stable.
He won't always need to use it, but it will be there to safeguard against his heart stopping. At this time, that surgery is scheduled for Monday.
We should know more tomorrow about the timetable for his transport. Please continue to keep Charles in your prayers.
Charles is alert, asking questions and we are trying our best to answer them. Today will be lots of tests as the doctors see if he can initiate any respirations on his own and walk down his blood pressure medication.
We continue to be grateful for the support that Charles is receiving.
Charles is back from his tracheotomy and peg for feeding. The surgeries went well but he will be sedated for quite awhile recovering from them today.
We can't wait to barrage him with questions now that we can see his whole face and read his lips better!
Good morning everyone! Important things first, Charles had a good night and we are grateful for your support.
Our entire family continues to work our way through this process. We are making updates to goals and funds as we learn about all of the parts needed for Charles short term and long term care.
Thank you for helping us continue to fight for Charles!
Our family continues to be amazed at the support, love and graciousness of everyone. We could never have imagined that we would reach our initial goal in just one day!
We are incredibly grateful. Let's keep fighting for Charles!
So excited to see us within reach of our immediate goal. We don't know the final cost of transport (air flight etc) to get Charles to Atlanta, but please know that ALL funds will be used expressly for Charles care.
We rattled off the names of everyone who is coming to support him until Charles indicated that we needed to stop pestering him and let him sleep.
Charles loved this pic!
Thank you so much to everyone who has reached out to us with support. Charles is continuing to make progress. As the swelling in his spinal cord continues to decrease, we will get a better idea of his recovery.
We will continue to post updates and let everyone know how he is doing and specific milestones. Right now we are focusing our positive energy on getting him stable enough for transfer to Shepherd Clinic in Atlanta.
On March 23rd, Charles Tumulak was taking part in one of his passions, obstacle races. Charles was completing the Cargo Net when he lost balance. His right foot was hooked in the net which caused his leg to catch and forced his body to turn upside down. He fell head first 15 feet to the ground below. The impact caused: a C2 fracture (broken neck), collapsed lung, facial fractures and a bruised pancreas.
At 46, Charles was the picture of health. An avid runner and crossfit buff, he had completed a dream of finishing a full marathon as well as several other obstacle races. A devoted brother and uncle, Charles was known for his positivity, enthusiasm and ability to make you laugh.
At this time, Charles is surrounded by his family who have traveled from far and wide to come together for him. The immediate goal is to get Charles stable for a transfer to Shepherd Center in Atlanta, GA from McLeod Regional Medical Center in Florence, South Carolina.
Funds will be used towards Charles' immediate care, transfer to Atlanta as well as his long term care. Updates will be posted as Charles continues his journey to recovery.