#Pray4Baylor Updates

 

Updates on Baylor Bramble, the son of Senior Pastor David Bramble.

12/30

We arrived at Vanderbilt at 5:30 this morning and Baylor’s surgery began shortly after 8am.

Just heard from the Dr. (9:50am) – The surgery is completed and went great – recovery will be several weeks.

Thank you for praying.  Would appreciate prayers for his recovery – especially his ability to breathe through his mouth while his nose is splinted.

12/29

We hope that you were able to enjoy the presence and blessing of Jesus during this Christmas season.

I apologize for the delayed update.

Baylor was able to have an extended trial with the NeuroNode; however, he was sick during many of the days.  With that said, he was able to have some success in controlling it, but it was limited.  We know that it is a viable option for the future; however, it is very expensive and likely not justifiable with his limited control.  But, as is always the case with Baylor – you never know what the future holds!

Tomorrow (Wednesday), Baylor is scheduled to have nasal surgery, with the hopes that it will help his breathing and limit the nose bleeds that seem to plague him.

As always, we would greatly appreciate your prayers.

I received a call while typing this update – due to COVID cancellations, Baylor’s surgery has been moved up to 5:30 am.  Wow…  This will not be easy, but we’ll make it happen.

Baylor has been struggling with respiratory issues and secretions.  He has violent cough attacks, which could be damaging to the surgical area.  Please pray that we can have several days of recovery without cough attacks.

Please pray for his platelets to be good enough for surgery & recovery.

Thank you for #Praying4Baylor

11/9

Today (around 11:30 am CST), we begin Baylor’s trial with the NeuroNode.  We would greatly appreciate your prayers for today and throughout his trial.

We need to locate a muscle that Baylor is able to signal for movement, and then we need Baylor to purposely and effectively engage it.

Thank you for your faithfulness to pray.

“This is the confidence we have before him: If we ask anything according to his will, he hears us.” ~ 1 John 5:14 (CSB)

11/6

Today is Baylor’s 22nd birthday.  His football injury happened precisely two weeks before his 17th birthday.  It’s hard to believe that more than five years have passed.  Sometimes it seems like yesterday; he was walking the halls at school and church and running down the football field to make a play.  Other times, it seems like an eternity since I’ve heard his voice as we prayed together or wrestled with him on the floor.

James (4:14) said that life is a vapor that vanishes quickly.  That’s true, but what we choose to do with each day can last for eternity.  I encourage everyone to make the most out of each day, not for yourself, but for others, and most of all, for God.

 

11/5

We have received the NeuroNode!

A representative will train us on Monday and then it is off to the races.

Please continue to pray that Baylor’s health will improve, and the trial will be successful.

Thank you again!

11/03

We just received word the NeuroNode is being shipped to us.  We should have nearly one month of a trial period to see if Baylor is able to use it.

Please Pray:

  1. That Baylor will remain healthy throughout the trial period (been sick lately).
  2. That we can find a muscle that he is able to control voluntarily, and the NeuroNode will work accordingly.
  3. Following a successful trial, that insurance will help in purchasing the necessary equipment.

Thank you for your continued support!

10/24

Update from Christy (filling in the gaps…)

In July, my sister and I decided to take our mom to the beach for her birthday!  We all wanted to have some quality time together, and some much-needed rest and relaxation!  Very seldom do I ever leave the house anymore overnight because David and I work together to care for Baylor.  David was so sweet to encourage me to go with my family and have a little time away!  In the middle of our last night there, I kept hearing the chime of our “RING“ doorbell (it chimes every time someone comes to our front door).  I didn’t think much about it at first -thinking it was our dog or something.  But after the 4th time of hearing the chime, I decided to look at the camera live video feed.  All the way from FL, I could see the video of paramedics coming in and out of my house and then saw them wheel Baylor out on a stretcher and into an ambulance.  I tried calling David, but he was obviously in a panic trying to get Baylor the help he needed.  I felt so terrible for not being home when they needed me.  I laid there for hours praying for Baylor and for David, not knowing at all what was going on.  I knew it was very serious for David to call an ambulance.  We have experienced a lot with Baylor and usually can work through emergencies.  The blessing of oxygen at home, suctioning equipment, and breathing treatments have probably kept Baylor from many emergency room visits!  David finally got a chance to call and give me an update. He had forgotten about the RING app and that I could see everything.  He said he didn’t want to call and worry me and was planning on telling me everything once we got on the road to come home.  Luckily, we were planning on leaving the next morning, which at this point was just a few hours away.  David said that Baylor had a really rough week and could tell that his platelets were low again.   Baylor had started coughing up blood and had even more coming out his nose.  Usually, when this happens, we can get it to stop.  But not this time.  David said that he was losing so much blood that he had no choice to call for help.  My family and I got on the road to come home just as soon as we could so that I could be there for Baylor.  The ER stopped the bleeding, gave Baylor a platelet transfusion, ran tests, and started antibiotics!  Baylor once again fought hard and was able to come back home within a few days!  He is so strong!

In August, we were blessed to take Baylor back to CORE for 3 weeks of therapy.  We were grateful he stayed healthy the entire time and had some great sessions!  I feel like this was his best visit and we were able to see some gains (mostly head control).  Due to coronavirus concerns in FL, Baylor and I didn’t go anywhere except the hotel and therapy.  The therapy gym required everyone to wear masks, and they were cleaning non-stop!  We felt very safe!  We are already trying to plan when we can return!

In October, we took the kids on a vacation to the beach for Fall Break!  I don’t know if “vacation” is the right word!  It’s really hard to travel with Baylor. We weren’t able to get a hospital bed this time, so it was harder than usual.  The beach house we rented had an elevator that we were so excited about, so Baylor could be with us wherever we were in the house. Unfortunately, his chair would not fit!  He was stuck on the first floor.  As fun as vacations are, they sure highlight all that we are missing.  I dream of watching Baylor and his brother throw a football on the beach and driving off on a golf cart to get ice-cream!  Somehow, sitting on a beach staring at an ocean is so therapeutic for me!  For just a few moments, I forget about how hard life is and am able to clear my mind!

Our neuronode trial (communication device)  that was supposed to be in March was canceled due to coronavirus.  We finally were able to reschedule it for mid- October!  Baylor was able to activate it and is now on a waiting list for a 2-week trial!  Pray he can stay healthy and can use the trial time wisely!  This technology could possibly allow him to text on a phone (among other capabilities)!  LIFE CHANGING FOR HIM!

We continue to battle low platelets, coughing, secretions, and pneumonia.  He has good weeks and bad weeks, but his health seems to be declining overall.  Because of this decline, we have slowed down on therapy.  We continue to push him in the gym on as many days he seems up to it.  We are so used to a busy therapy schedule, and it’s hard knowing he’s just not up to it sometimes.  We want to use our time each day working!  Not just sitting at the house.  Please continue to pray he can turn the corner with these health issues and get back to focusing our energy on getting his body moving again!

It’s been five years since we’ve heard Baylor’s voice.  Five years of watching him work so hard to regain purposeful movements… Five years of pouring his food in a tube instead of seeing him eat his favorite foods.  Five years of staring at his truck in the driveway, wondering if he will ever drive it again.  Five years!  But I can say in the same breath, it’s been five years of feeling the Lord’s peace and purpose.  It’s been five years of unexplainable strength in a situation that looks impossible.  Five years of experiencing the love and generosity of so many in our church, schools, and community!  And Five years of still believing in a God who can do ALL things!

Vacation

10/23a

Let me begin this post with several explanations:

  1. We have not posted an update since February of this year.  We chose to suspend our updates, in light of the many needs of others, due to COVID-19 and other national crises.
  2. We had a March update prepared, and as you can see below, it was published today.
  3. Today marks the 5th Anniversary of Baylor’s injury (see below).
  4. It is our intention to share several updates over the next week.

All that being said, I want to thank you from the bottom of my heart for your continued prayer and support.  I have heard from many of you, even with the absence of our updates and requests.  These past seven months have been filled with ups and downs for Baylor.  He has continued with his therapy, was able to take a “vacation” trip, and has qualified for a trial with the Neuronode (communication device).  However, he has also experienced a lot of illness and even another short stint in the ICU at Vandy.  *Christy will fill in the details in the days ahead.

10/23b

Today marks the fifth anniversary of Baylor’s football injury.  It is a day filled with mixed emotions.  On the one hand, he was given no hope of survival, and yet today, we celebrate his fifth year of life post-injury.  On the other hand, his recent progress has been minimal, but he continues to fight every day and defy all odds.  His constant care has been very taxing on all the family, but we are constantly being lifted and strengthened through the prayers of many.  Christy has become a full-time mom/wife/nurse/therapist, which is more than can be expected of anyone; however, she fulfills each calling with grace and excellence.  Macie and Brady’s lives have also been filled with adjustments, and while I know that it has been difficult for them, they have not used this tragedy as reason to rebel, complain, or seek sympathy.  Instead, God has grown their faith through this adversity, and we have remained close as a family.

In all:  We are still blessed beyond measure.  God has been faithful throughout our journey.  Our community has given us support that is unimaginable.  And we are humbled and thankful for each and every prayer that is lifted up for Baylor and our family.

#Pray4Baylor

Huge thanks to @LovelessPhoto

3/11

Update from Christy:

Thank you for praying for Baylor while he was at CORE of Orlando! He was able to complete 4 weeks of extensive therapy. Please know that this opportunity was only possible because of the financial gifts of so many.  We feel so blessed to be able to provide Baylor with the best care possible, and that’s because of YOU!  Over the past few months, we were also able to install an overhead lift system in the therapy gym and in Baylor’s room.  This has made it so much easier to get Baylor in and out of bed and onto his equipment in the gym.  We will continue to use your gifts to further Baylor’s therapy and healing!  We can’t thank you enough for your support and continued prayers!

Our journey home from Orlando was not without difficulties!  We were about 3 hours from home when we hit debris on I-75.  This caused a flat tire and damage to the front of Baylor’s vehicle. We were so thankful we were all ok, and it was only a flat tire, but were left once again struggling with why things like this keep happening.  Because of the close proximity to the interstate, we had to be towed to the nearest exit so David could put on the spare tire. We had to remain in the vehicle while being towed because of Baylor’s wheelchair and not having transportation for him.  (quite scary)  And believe it or not, our spare was only a donut tire- we would not be able to make the 3-hour trip to get home to Brady and Macie!  It was near midnight when we found a 24- hour tire service center that put a new tire on so we could make the trip home!  Our 10-hour trip took 15 hours!  Only the Brambles!

Baylor gained a lot of strength during his time in Orlando, and it even opened up a new door for a possible communication device.  The Neuronode has the capability to pick up even the slightest movements and can differentiate purposeful movements from involuntary movements.  We have another trial with this system towards the end of March.  Please be in prayer for Baylor’s team of therapists in Rutherford county that will help us decide which system is best for Baylor and which system allows us to be the best steward of our finances.  We are so grateful to the Rutherford County school system that has blessed us with such amazing people to help us. We desperately want to find the right communication system so we can hear Baylor’s needs and wants!

Toward the end of last week, Baylor began showing signs of sickness once again.  Lab work showed low platelets and x-ray showed pneumonia.  This is nothing new for Baylor.  Sadly, it seems to be his norm.  Please pray that the antibiotic he is on will keep him out of the hospital this time and that his platelet levels begin to trend upwards.  He has been through so much, and seeing him struggle again breaks our hearts.  We will be keeping Baylor at home for a while, away from crowds, until all the sickness settles down in our area.

While our family continues to walk this journey, we certainly have seen our ups and downs.  It is a daily reminder to thank God when things are going well and to trust God when things are hard.  We are so thankful for His loving care, His provisions, and His sovereignty.  And we are so thankful for all of YOU for remembering Baylor in your prayers!  Please don’t stop praying for Baylor!  Our God is able, and we will trust in Him!

02/21

Update on today’s trial:

Baylor was able to participate with the evaluation today for his Control Bionics communication device. Unfortunately, he was fatigued from his recent illness and struggled to stay awake/engaged. With that said, however, he did push through, and they were able to see enough engagement to continue testing when Baylor comes home.

We are constantly reminded this journey is a “rollercoaster” and not a “rocket” – Ups & Downs. However, we are still moving, and we are thankful for that. In Psalm 23, David reminds us that God is our Shepherd, who is always with us. He is with us To, From, and THROUGH the valleys.

God is Able!

Thank you again for all your prayers. We feel them, and God hears them!

Today’s Trial Team

2/20

Our family would greatly appreciate anyone/everyone taking an opportunity to pray for Baylor today.  He’s had some sick days lately, and today he was unable to participate in all of his therapy sessions.  Tomorrow morning at 9:00 am CST, he has his evaluation/trial with the possible communication device.  We really want him to feel and be his best for that trial.  Please pray for his health, strength, and God’s amazing grace.  Pray also, that this device will be effective for him.  You cannot imagine what it would mean for Baylor to be able to communicate with us at will.

Thank you from the bottom of our hearts!

02/18

Update from Christy:

Greetings from Florida!  Baylor is back at CORE (Center of Recovery and Exercise) and working hard!  He is putting in 3-4 hours of intensive therapy each day!  He is giving it everything he’s got, and I see a determination in his eyes!  Please continue praying for him to stay healthy and to stay safe during the sessions.  Pray specifically, the connections from his brain to his muscles get stronger, so his movements can get bigger!  This Friday at 9:00 am EST, Baylor will be doing a trial with a new communication device.  PLEASE PRAY!  The iPad and eye gaze systems we have been using have brought us some communication with Baylor, but both prove very difficult for him.  This new system can pick up the slightest of movements and can differentiate between “twitches” and “purposeful movement.”  I am still learning about the system, but it sounds amazing and would give Baylor a voice and some independence!

We have re-connected with so many CORE families we met last summer.  Please continue praying for John Michael and Alex (our two favorites)!  Both of these boys have suffered brain injuries and are fighting just like Baylor!  We love our time with them and their moms!  We can’t say enough great things about the trainers at CORE who challenge and encourage Baylor!  They certainly know how to push their clients and make the most of every single minute!  Pray for them as they minister to so many in this community and around the world.  They are a blessing, and I am so thankful for their time and talents!  I know Baylor will leave here stronger than he came and encouraged to continue the fight!

Please know how thankful we are for every card, gift, financial donation, meal, and prayer!  Not one single minute on this journey have we ever felt alone!  Thank you for continuing to read these updates and for praying specifically for Baylor’s healing. Our journey over the last 4 ½ years has been difficult, but we are not without hope.  We continue to believe our GOD IS ABLE and will trust Him with the outcome.  Thank you for believing with us and for walking so faithfully by our side!  I am attaching a picture of John Michael and Alex and some CORE pictures and videos.

John Michael

Alex

 

1/21

I cannot thank you enough for keeping up with Baylor’s story and praying for his recovery.  When we say that we feel the prayers – we mean it!  Instead of giving up or giving in, we are constantly encouraged and lifted up by so many.  Thank you is not enough, but we cannot say it enough, either.

 

Updates:

Baylor’s recent biopsy results shown NO Bone Marrow Issues!

Baylor’s most recent surgery (baclofen pump removal) was a complete success – he has fully recovered, and there have been no issues with spasticity!

We will drive back to Orlando, Monday morning.  Baylor and Christy will be back at C.O.R.E. for physical rehab from Jan. 28th through Feb. 25th.

 

Prayer Requests:

Pray that Baylor remains healthy, in preparation for our trip, during the long drive, and throughout his stay in Orlando.

Pray that he gains strength during his time of therapy, and lasting results of intentional movement.

Pray for all of the specialists that work with Baylor, as well as our witness to them.

Pray for Christy as she manages EVERYTHING during their time in Orlando (it’s a lot).

 

James 5:16 (CSB)

16 Therefore, confess your sins to one another and pray for one another, so that you may be healed. The prayer of a righteous person is very powerful in its effect.

 

12/15

Since our last update, Baylor has been home recovering from his platelet and pneumonia issues.  It’s been a bit of a slow process, but he seems to be making progress.

With that said, tomorrow (Monday) at 1 pm, Baylor will have a much-anticipated surgery.  Shortly after his injury, he began to have spasticity (contraction of the muscles), which made him uncomfortable.  To alleviate the spasticity, he received a baclofen pump in his abdomen, which releases the medication into his spine to relax the contractions.  The surgery relaxed his muscles; however, he immediately lost all (slight) purposeful movement.  While doctors believe that Baylor’s loss of movement is not tied to the pump, and are only coincidental, we certainly pray that God uses tomorrow’s surgery for continued healing.  We were also told that once a person has the pump installed, they would likely be dependent on it for life.  Over the past four years, we have slowly lowered the dosage until he no longer required it.  He had now been baclofen-free for one and a half years, so the doctors feel comfortable with completely removing it.

Please pray that Baylor is healthy enough for tomorrow’s surgery.

Please pray for the surgeon and staff that will perform the surgery.

Please pray the surgery is both perfect and effective, with no complications.

Please pray the removal will help in Baylor regaining more of his purposeful movements.

11/18

12:08pm

The procedure is complete!  We should be headed home this afternoon!

Thank you again for all your prayers.  Praying the biopsies will either show nothing of concern, or a treatable condition for his drops in his platelet count.

11/17

Baylor is still in the hospital but does seem improved.  He will likely have a bone marrow biopsy tomorrow.

Please join us in praying that Doctors can determine what is causing his platelet count to regularly drop.

Forever grateful for every prayer.

11/15

Due to some lung and bleeding issues, I had to bring Baylor back to the ER early yesterday.  On a good note, he was immediately admitted and was moved to a step-down ICU room within eight hours.

As always, he is fighting through everything – but we appreciate any/all prayers.

We still need to get his platelets increased & stabilized, as well as his lungs clear from any infection.

Thanks for all your support.

11/10

Let me begin yet another post, by thanking you all for your prayers.

After 2+ days in an ER room and another 24hrs in an ICU room – Baylor was able to come home late Friday!

Answered Prayers:
Baylor’s platelet count improved.
The pseudomonas virus in his lungs (contracted from a previous time on a ventilator) did not flare-up.
After more than three years of unsuccessfully trying to get oxygen at our home (insurance & paperwork issues), an amazing Dr. at Vanderbilt was able to get it approved!  We now have oxygen for Baylor!

 

Philippians 4:4–7 (CSB)

Rejoice in the Lord always. I will say it again: Rejoice! Let your graciousness be known to everyone. The Lord is near. Don’t worry about anything, but in everything, through prayer and petition with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus.

As we rejoice, please know how grateful the Bramble family is for your love and support.

11/06 10am

Happy Birthday Baylor!!!

Unfortunately, we are still in the ER (see previous post) but hopefully headed to a regular room soon.

Appreciate all prayers.

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