Jordan’s Journey to a cure

01/09/2026

1/9/2026

Jordan had a VERY early start this morning his appointment with the gastroenterologist was at 7:45AM at UT in Houston. 👀 That means he has to be up at 4:00AM to leave for Houston by 5:00AM. We got his old peg tube replaced with a Mic-key button. The plastic shield that held the other PEG tube in place caused a Granuloma. Granuloma on a PEG site is excess, red, moist granulation tissue forming around the tube opening, a common healing response to irritation from movement, moisture, or friction, causing easy bleeding and looked painful. I had been treating it with Triamcinolone cream our wound care nurse Heather suggested it. She has been wonderful by the way. 💕 Just like my previous post nothing is easy and straightforward dealing with Jordan’s care. The procedure went fine. What usually occurs is the doctor goes to the hospital to get 2 Mic-key buttons one to put in immediately and the other for us to take home in case of an emergency and we have to replace it at home or at the local hospital. We’ve had previous experience with the local hospitals here in the Golden triangle, and none of them carry Mic-key buttons on hand.

That isn’t what occurred today . The doctor explained the healthcare system has changed and they don’t want to give them out or nor could they write a prescription for us to get it at a DME company (durable medical equipment ) . Now we are stuck on the search to find an extra one for emergencies. This is very important for Jordan to be able to take in nutrition and medication 22 hours of the day because of his hyperglycemia and missing just one dose of seizure medication he will have a seizure within hours. 

So if you know anyone that has an extra Mic-key gastronomy feeding tube low profile G-tube 24 French with the length of 2.0cm-3.0cm . Please contact us! Thanks!!!!!🙏 💕

*IF YOU COULD PLEASE SHARE THIS POST*

01/06/2026

Jordan had an endocrinologist Telemedicine appointment with Dr. Nikita Lobo at UT this morning. The purpose of the appointment was to get CGMs (continuous glucose monitors) covered by insurance again it’s required about every 6 months. Usually this is specific for diabetic patients only but Jordan’s low blood glucose (hypoglycemia ) started after a seizure in 2024 and is unknown why by the hospital and all the endocrinologist and neurologists there. (it’s autonomic). The justifications are usually straightforward. But everything is a fight for Jordan’s care. Although he’s predisposed to have diabetes like myself, he’s never been diagnosed diabetic. Jordan is on constant feedings for a while now to keep his blood glucose from dropping. Usually, if we have to pause his food more than 2-3 hours due to vomiting and aspirations it drops into the 40s which is definitely dangerous. They have suggested to try glucose gel that you can even put in an unconscious patient. The glucagon shots he was taking also make him nauseous, which does not help. 

We are also still working on getting him his stainless steel tracheostomy. I believe it’s called a Jackson trache. We are currently changing out his plastic tracheostomy every three months due to his colonized infection of a Klebsiella infection that occurs when common gut bacteria enter other body parts, causing serious issues like pneumonia, UTIs, bloodstream infections (sepsis), meningitis, and surgical site infections. The plastic ones hold on to the infection through biofilm so the stainless steel version would help prevent infections. 

And finally, we are still working on getting Jordan a customized shower chair from great American . He did go get remeasured and they are supposed to be putting in the claim to Wellpoint the star plus waiver program .  If this does not work, I’m considering doing a fundraiser to pay the $5800.00 for it. He’s already gotten one stage three shearing pressure sore from his current one.  A shearing wound (or skin shear) happens when skin layers slide in opposite directions, damaging deep tissues and blood vessels, often under the surface, leading to pressure injuries or skin tears, especially from activities like sliding down in bed or shifting in a wheelchair. I’ll spare you the pictures of that , but it was close to seeing his bone on his buttocks. He’s currently still on wound care basically to prevent a new injury but is doing much better. But we definitely want to prevent this from happening again ever. It has to be so painful.

Hope everyone is having a good year so far. Thanks for all the prayers and love that we are shown every day. 💕





01/02/2026

01//01/2026
Happy New Year’s Day. As we put away all the Christmas decorations Heidi our kitty found a cozy spot to cuddle. Looking back on 2025 Jordan had a much more stable year. Only one seizure all year and no major medical issues that required hospitalizations! The end of 2024 was beyond devastating . I was to the point of starting to plan a funeral. Over 20 seizures that year and day to day I was in fear for Jordan’s life. I just got to the point that I excepted Gods plan for Jordan and stopped trying to control what I couldn’t. I spent less time posting on social media and put more time into taking care of myself. If that only meant going to doctor appointments and taking naps. Lol The last week I have spent resting while the others were off work. We eventually had Christmas with my middle son Corey and his girlfriend on New Year’s Eve due to him having the flu. On to more relaxed, happier years to come and peace, happiness ,and comfort for Jordan. Thank you all for your thoughts and prayers and support all year long. I keep to myself a lot and may not show it but it does mean everything to us. 💕

12/15/2025

12/15/25

Today has been a long day. We got to TIRR in Houston early but they were running behind. Just my luck. Jordan received Botox injections today to help with his contractures. He has started to get some skin breakdown under his arms from keeping them so tight to his sides and pulling and pushing his right side especially. We discussed with Dr. Li about getting cryotherapy again. Just like the neurotoxins (Botox and phenol) they use to inject his muscles. Instead they use an ultrasound guided needle to inject an ice ball using liquid nitrogen into the muscles. This works immediately and lasts twice as long , in our case usually. Currently he receives Botox and or phenol every 3 months.

As for me. I’m still in the process of trying to get a private duty nurse. We have changed programs under Jordan’s Medicaid Star plus waiver program from Molina to WellPoint . So that starts the process all over again. You would think with Blue Cross Blue Shield, Medicare and a Medicaid one of tte insurances would provide basic care for Jordan. Im praying this works because because I’m struggling mentally and physically. I went back to my cardiologist appointment to follow up. I do not have an electrical issue . But do have SVTs and tacticardia due to stress and anxiety. They told me to get more sleep and less stress. 😂 yeah ok👍🏼 .
Recently I was asked out by a childhood friend to catch up. Trying to explain everything that has happened with Jordan and I literally can’t spend a moment away is beyond difficult to describe. I might as well be speaking Greek to them. I told them it was nice chatting about something besides a conversation that revolves around Jordan and his care. I hadn’t had ANY conversations with anyone in months. I know they probably thought I was exaggerating. Joys of being a full time caregiver to a medically complex son. I’m looking forward to the boys being home for Christmas and staying in pajamas all day ,and getting naps snuggled up to my dog Waffles, next to a fire. Wishing you all a very Merry Christmas 🎄 💕

11/03/2025

11/3/25
Long over due little update on Jordan. We went a few weeks ago to UT in houston for our appointment to get Jordan‘s trache changed out like we’ve been doing about every three months because the frequent infections he gets . He still have Klebsiella the infection that is colonized and cannot be treated by antibiotics. Unfortunately, Dr Alavas wife decided to go into labor and we were turned around at the door and had to go back again the following Friday after we were already at the appointment. The following appointment we discussed why he gets the reoccurrence of his infection so bad and it seems to improve every time we change his trache out for a short period of time. Dr. Alava explained to us that we may try a stainless steel version of his tracheostomy tube. It has a less porous surface. The smooth surface of a metal tube is less porous than plastic, which helps resist biofilm formation and bacterial colonization, potentially lowering the risk of infection. So the next visit if his stainless steel tracheostomy tube comes in (approved by insurance and shipped) we’ll have it changed out to that and see if that helps with the infections. So we can stop suctioning his secretions as much from the bacterial infection.  This week we had several routine visits that I’ll post about later after I know a little more about the results from their testing.

I’m still having additional testing on my heart situation , many of you have asked. Tomorrow I’ll start my heart monitor. All in All we’re doing ok taking everything day by day!

Oh and I believe we will be ending wound care on the 10th. He’s completely healed. Thank the Lord.

Hope everyone is starting November the month of Thankfulness with something to be thankful for! God Bless.

09/16/2025

9/16/25
I usually give long updates on Jordan in most of my posts. He is doing well and did aspirate last night, so hopefully that doesn’t turn into even more difficulties for him to breathe. But today is about caregivers. As caregivers, we put ourselves on the back burner most, if not all, of the time. As many of you know, my husband had a STEMI (widow maker) heart attack on 4/30/23. Around that time, I also noticed heart issues but ignored the signs, telling myself it was panic attacks. Then my mother had several (four) major heart procedures, one of which was quintuple bypass heart surgery. All this time, I needed to go back to my doctors for my mental health medications, normal blood pressure medications, and my diabetic needs. All my concerning health issues have just gotten worse. It’s not as easy as most people think; I have to make an appointment and go. Adam or one of the boys has to take off work to come watch Jordan each time. We really can’t afford missing the pay because of Jordan’s constant appointments and medical bills. So I have put every need I have on hold. I finally decided I desperately needed to go in and get all my medical needs taken care of, and boy, am I a mess. I finally went and got my first mammogram; they found bilateral masses, and I have to go in for future testing, ultrasound, and possible biopsy. My mother had breast cancer younger than me and almost died. My family history of cancers is pretty awful. So I am very nervous, to say the least. I’m no longer having panic attacks; my anxiety has been much better with seeing my mental health professionals and getting back on the right medications. But with that being said, I am having heart problems that I put off as panic attacks. I went to see the cardiologist yesterday; they seemed very concerned and want me to start immediately taking new medications to slow my heart rate down and go for additional testing starting next week, a chemical stress test followed up by an echo, and then I go back after all those tests are completed in six weeks. Please pray for us to get through all of this, my health, and especially for Jordan’s care during this time; thanks for listening. Of course, during this time, as a mom, I’m more concerned with if something happens to me, who’s going to take care of Jordan. 💕

In better news, Corey received a letter that has considered him for the role of process operator at Exxon for next steps in the application process. Hopefully, he will receive the role.

Nolan and Shawn went to Dallas this weekend for GREY Day concert featuring Suicideboys, BONES, Night Lovell, Germ, and Chetta. Then went to probably one of the best NFL games I’ve seen in a very long time between the NY Giants and the Cowboys, with the Cowboys winning in OT 40-37. They had an amazing weekend; I love seeing them so happy.

09/05/2025

9/3/25-9/5/25

This week has been busy Jordan had his baclofen pump refilled Wednesday at TIRR in Houston. Then we had a return for another visit on Thursday for Botox injections. The injections help with contratures of his muscles. Insurance doesn’t allow two separate injection procedures to be on the same day. Silly I know. Adam had to take off work both days.

Jordan’s pressure sore is doing much better. The wound vac was removed Wednesday morning it’s healing nicely now. Hopefully we will have no set backs. We still need a customized shower chair that Jordan won’t get hurt in. (That’s what caused the pressure sore). Heather his wound care nurse is still coming out 3 times a week. She’s been wonderful. We go to the wound care clinic on Friday.

Nolan took off work today to watch Jordan so I could finally could take care of myself for once and went to my doctor. After they took my blood pressure and heart rate they immediately asked to do an EKG. I thought I was having heart rate issues due to panic attacks but a few weeks ago I got on some new anxiety medication that has helped tremendously. I’m still having the heart rate issues. I’m seeing the cardiologist in 2 weeks. I will be doing my mammogram later today. Nolan does great with Jordan. I tease the boys they could always have a fall back job in the healthcare field. 💕

08/18/2025

I thought it was very sweetJordan was honored at his 10 year class reunion on Saturday. It seems like just yesterday. Although Jordan is still here with us he will never recover or be the same. Whether you knew him or not he had a contagious smile. He seems to have friends where ever we go. It can be incredibly challenging grieving someone here with us today. There's no finality, unlike death, and the lack of closure can make the grieving process feel confusing. Again thank you everyone for including him. 💕

Jordan is still doing as expected. I am upset that we cannot get him up in his wheelchair daily like we like to. He’s currently battling a pressure sore that he got from his shower chair. It’s amazing how a bruise can turn into such a horrible sore. He’s currently having a wound care nurse come out 3 times a week. He has a wound vac and it has improved the healing process but hopefully another month and it will be healed God willing. 💕

07/18/2025

I heard a version of this prayer yesterday and thought I would share it here with you. Excuse my grammar and spelling.

"Father, when life feels uncertain and I don't know what's ahead, doubt fills my heart and makes me question your plan. I want to trust you, but I often feel overwhelmed by what I don't understand. I know you see the bigger picture, the details I cannot comprehend, and you are working all things for my good. Help me release my need for control and place my trust completely in you. Quiet the voices of doubt and anxiety that try to steal my peace. Fill my heart with assurance that your ways are higher than mine and your timing is perfect. Teach me to take each step in faith, even when I don't have all the answers. Show me that you are within me and with me, guiding me, preparing me for something greater than I can ever imagine. Help me find the joy in the journey, even when the road feels long or difficult. Lord, give me the courage to trust you in every aspect of my life, my relationships, my work, and my future. Remind me daily that you hold my life in your hands and your plans are always for my good. Thank you for being faithful, for never leaving me, and for leading me with love. In Jesus's mighty name, Amen."

07/17/2025

06/22/2025

6/22/25 Let's cherish the sweet memory of Jordan working at Tate & Company 10 years ago! It's amazing how time flies. Jordan could use some extra prayers for comfort as he's facing challenges with low oxygen levels. He's been aspirating, and we've had to suction secretions constantly. Additionally, he's dealing with tummy issues and unable to urinate on his own. Despite running on empty with minimal sleep, we remain hopeful. With everyone's busy schedules, I've had to adapt to less help, but we're trying to stay positive. As the anniversary of Jordan's AVM rupture approaches, we're praying for strength. Please keep us in your prayers, and also remember my mother, who's undergoing another heart procedure on Friday. This should be her last, and we're praying for a successful outcome. She's had main blockages in her carotid and subclavian artery, and this less invasive procedure will help alleviate those issues. Although the procedure does have some higher risks for another stroke. We're staying optimistic and grateful for your support. 💕

06/01/2025

6/1/25 Update from yesterday. I had to call Adam home from work this Saturday. Jordan’s trip to Baptist ER went well. The emergency room doctor was asking why he had a Mic- key button. Normally they are for pediatric patients but Jordan is small and he was pulling the gtube out that was first placed in 2020. His arm is contractured right in that area where it needed to be placed. So gastrointeroligist said it would be better and easier on him and us with a Mickey button . That has worked for us until now. We are ok with the gtube that is placed now. Jordan has appointment on the 13th with his regular gastro at UT. We think he may go back with the Mickey . We also kinda felt relieved the emergency room doctor could not place the 2 new surgical Mickey button kits we brought up there with us. Because we were unsuccessful to do so at home also. We knew something was going on with this Mickey button and I had already scheduled an appointment to see his regular gastroenterologist at UT doctor Barani Mayilvaganan. As everybody knows it’s not easy to get appointments immediately so his appointment is not until June 13th. Hopefully we don’t have any issues before then. The ER visit actually went pretty fast for being at the emergency room. It was only an hour and a half in and out ! So that tells us that everybody that he skipped in the waiting room wasn’t actually there for real emergencies. Hope everyone can enjoy your Sunday. I’m feeling a little less anxious now.