Jordan’s Journey to a cure

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.

05/31/2025

Jordan could use a few extra prayers right now. He’s headed to Baptist ER. Hopefully they can replace his peg tube with no additional issues. I was unsuccessful to do it at home.

05/15/2025

5/15/2025 After yesterday’s post I had a few people reach out and ask how Jordan is currently.

He had an appointment with endocrinologist this morning via telehealth his bloodsugar is doing better than last year. His hypoglycemia is more under control with an adjustment of a VERY slow rate of 48ml an hour continuous feeding with his food pump.

He had Phenol and Botox injections this last month with Dr Li at TIRR . His muscle contractures seem a little better since.

Jordan‘s appointment with Dr. Tallavajhulla  his seizure specialist on April 16 th went well. He has only had one seizure this year by the grace of God. Obviously the new increase in the seizure medicine is doing great .

Jordan had an appointment Dr. Alivia at UT medical he is an ENT on April 30th. We have downsized Jordan‘s tracheostomy to a size 6. We suspect that the size 8 was a little bit too big for his body size and was irritating him, because when we laid him down, he began to cough. A tube that is too big can press on the tracheal wall, causing irritation and swelling.

Jordan has had to go to Wound Care locally here with Dr Ahmad Waqar  he acquired a pressure sore from his stupid shower chair that we despise. I’ve been complaining about this shower chair for over a year. I knew he would get injured in that contraption . We need to get a new customized shower chair. The shower chair DME company refuses to send the claim to insurance even though insurance says they will pay for it. The out of pocket cost is close to $3000. 

Overall Jordan is doing as expected some days and weeks are worsening. Occasionally we have a great day. We are running on little to no sleep. The star plus programs was approved on May 1st for a private duty nurse. But we have yet to hear from our caseworker he has 15 working days to reply. 🙄 I’m not holding my breath for help. I’ll continue to care for my son to the best of my abilities even if it kills me. Thank you for all the thoughtful comments for Jordan’s birthday and the continued prayers💕

05/14/2025

Today marks Jordan's 28th birthday, a day that's difficult for us. Since Jordan doesn't eat, we won't have cake, and there won't be any presents or celebration. What we do have, however, are our memories. We'd love to hear about your memories with Jordan or look at some pictures you may share. I love this last birthday picture in 2020 before his brain injury.
I miss his beautiful smile. 💕