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AJ's Medical Expenses and Recovery

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Hi, my name is Jamie and I'm AJ's (Adrienne) mom and we reside in Central Texas. I will summarize her story but for those that don't mind a long read, more details will follow.

The Summary:
AJ is a 17 year old girl who was recently diagnosed with a congenital defect in her brain called an Arteriovenous Malformation (AVM) and an aneurysm that developed as a result of the AVM. Prior to this, she was your typical teenage girl. She was excited to start her senior year and we had a big summer vacation planned to visit Alabama and New Orleans. Our first out of state trip as a family. She was to celebrate a two year anniversary with her boyfriend. She loved to roller skate, see her friends, cruise around in her car, listen to 90s/Michael Jackson/The Weekend etc and preferred to work to earn her own spending money. She was a good kid who was home by curfew, followed most of the rules, never in trouble, successful in school and someone who had a very bright future ahead.
Beginning in July of this year, all of that changed- she has experienced 3 hemorrhagic strokes from the aneurysm rupturing resulting in severe neurological deficits and negatively impacting her qualify of life overall. She has had 5 angiogram procedures, 1 craniectomy, 1 PEG procedure, countless radiologic procedures, 2 ambulance transfers, 1 helicopter transfer and admitted to 3 different hospitals (1 considered out of network). She and I have been living in hospitals since July. I refuse to leave her side. She is now at an inpatient rehab receiving ongoing nursing care as well as therapy. Upon discharge, she will need 24/7 care with the possibility of private nursing for some of that so I can return to work when possible. Our home will need minor modification to make it safer and we will have to purchase additional medical equipment to help with her homecare. She will also transition to outpatient therapy services to continue rehabilitation. She will undergo a handful of procedures/surgeries and likely a lifetime of follow up visits. Overall, a long road of recovery ahead.

The GoFundMe is established for those wishing to help with any expenses related to her care. I've been asked for one numerous times and those that know me, know i do not like to ask for help. I'm too stubborn but a friend insisted so here we are. We do have insurance through my employment that does help pay towards her medical bills and a portion of the out of network hospital we were transferred to. Some have sent money via other methods and those funds are going towards her medical expenses as well as hotels, gas and food during the hospital stays. We're still receiving bills, so the goal is just a guess/estimate. Any help is appreciated but certainly not expected.

Details on her full journey below:

On July 18th, 2023, AJ was home getting ready to visit a friend when she experienced "the worst headache ever." After taking ibuprofen and trying to rest, she lost all feeling on her left side and was slurring her speech. We rushed her to the ER where she was triaged and almost immediately taken for a head CT and MRI. Imaging confirmed she had a hemorrhagic stroke (bleeding in the brain) and she was diagnosed with an Arteriovenous Malformation as well as a ruptured aneurysm.

An Arteriovenous Malformation (AVM) is a tangle of blood vessels irregularly connected to arteries and veins in the body, most commonly in the brain or spine. This is a congenital defect and most aren't aware they have it. It is usually discovered when it ruptures or it's an incidental finding during a scan or autopsy. In some cases, like Aj's, an aneurysm will form as a result of consistently high blood flow through the AVM.

Aj was transferred to Baylor Scott and White-Temple where they have a Neurosurgeon specializing in AVM's, Dr. Vance. Aj was admitted to their ICU for close monitoring.
On 7/20/2023, AJ underwent a procedure called an angiogram where they use dye to map the vessels in her brain. During this procedure, they attempted to embolize the aneurysm (fill it with a titanium coil) and prevent further bleeding. Unfortunately, due to the complexity of the AVM and spasms within her blood vessels, it was not successful. After a few days of observation, she was discharged home on 7/23/23. She had left sided weakness, some speech impairment but was overall walking/talking on her own. Her prognosis was great!

On 7/26/23, AJ experienced left sided weakness, slurring and another headache while shopping for school. We drove her straight to BSW Temple and she was admitted to ICU again after confirming her aneurysm had bled again (2nd hemorrhagic stroke).
On 7/28/23, a second attempt to embolize her aneurysm was made but was again unsuccessful. Dr. Vance recommended we transfer to another hospital, UT Southwestern, to see his mentors, Dr. Welch and Dr. Pride. His words to us were, "if she was my daughter, aside from myself, I would take her to Dr. Welch." That was enough for me.

On 7/30/23, AJ was transferred by ambulance to UT Southwestern in Dallas. She was admitted to their Neuro ICU for observation. UT Southwestern is one of the leading hospitals in the state of Texas, they have a nationally recognized Neurosurgery program and Dr. Welch is head of the program. They also are a University and this gives them access to tools, equipment and advancements in technology that BSWH did not have available to them.
After getting settled in and her records reviewed, the plan for a third angiogram was set.

On 8/2/23, the third attempt to embolize her aneurysm was made by Dr. Pride and yet again, was not successful. There is a "hair pin" loop in her blood vessel feeding her aneurysm that was difficult to enter and her "spastic" blood vessels weren't helping. During this procedure, the blood vessel collapsed and blood was no longer flowing into the aneurysm. This was considered a potential success, if the blood vessel remained closed.
After a few days observation, AJ had no worsening neurological deficits and the decision to permanently sacrifice the blood vessel was made in hopes this would finally prevent any future bleeding from the aneurysm.

On 8/5/23, Dr. Welch performed her fourth angiogram and they sacrificed the collapsed blood vessel by coiling it. AJ remained in ICU for observation.
At this point, her speech was very delayed and she struggled to communicate. She knew the words in her mind but her brain was struggling to make the connection for her to speak them. She had no movement in her left arm and her left leg was extremely weak. While in ICU, we started seeing physical therapy, occupational therapy and speech therapy. After two weeks at UTSW, the decision was made to transfer her to inpatient rehab closer to home and on 8/14/23 we arrived back at BSW-Hillcrest.

AJ was attending PT, OT and speech therapy three hours a day. She was beginning to walk with a single crutch, she voluntarily moved her left arm for the first time and her speech was starting to improve as well. Things were looking up.

On 8/19/23 during PT, AJ experienced a headache with vomiting shortly followed by a seizure that caused her to go unconscious. I was with her during this event. It was the most horrifying thing i have ever witnessed. An overhead paged was made for a Dr. Rapid and the next thing i know the Neurosurgeon is explaining to me that he is going to perform a craniotomy to "give her a chance." Nothing can explain the fear i felt that i could lose my only child that day. I thank God for answering prayers because they saved my daughter's life that day. I will forever be thankful to them.
AJ was then careflighted (helicopter) back to UTSW the same day while Michael (my other half) and i drove to meet her there.

When she arrived, she was intubated and sedated. The right frontal portion of her skull had been removed (craniectomy) to relieve pressure from her third hemorrhagic stroke and to evacuate a blood clot. She remained intubated and sedated for several days while they gave her time to stabilize.

After several days, we discussed a fifth angiogram with no planned interventions in order to get an updated "map" of her blood vessels and make a plan for next options.
Surgery was not a preferred option up to this point as her AVM is located in the center of her right frontal lobe. Surgery to this area was extremely risky, which is why so many attempts to embolize it were made.

On 8/24/23, Dr. Welch performed her fifth angiogram and it was SUCCESSFUL. This was an unplanned intervention but the opportunity presented itself and he took it. Prior to the procedure, she was given a medication to prevent her vessels from having spasms. This prophylactic medication and a new type of catheter gave Dr. Welch an opportunity to achieve what had failed four times before. All the vessels feeding and surrounding her aneurysm are now filled with a glue. Her entire ICU team, nurses and all, rejoiced for her. AJ remained sedated and intubated for a little while longer. After a few days, they slowly started weaning her off meds and removing tubes. We were finally able to see what neurological deficits she had and they were significant this time.
She lost all use in her left arm again, maintained use of her left leg but it had weakened. Her cognitive abilities were severely impacted. She had no idea or understanding of where she was or what happened but she would not let momma's hand go for anything. As a result of her intubation, she also lost the ability to eat/drink normal things and had to be placed on a special diet. She wasn't swallowing well and any thin liquids were going into her lungs.

After a few days, she was cleared to be transferred back to inpatient rehab where she can focus on regaining her strength, speech and overall cognitive abilities. We arrived back at Hillcrest inpatient rehab on 8/30/23. From day one, she was refusing to eat or drink. She didn't want to participate in anything and she was upset all the time. We made the difficult decision to put her through one more procedure and have a PEG tube placed. The PEG tube allows her to have liquid nutrition straight to her stomach from a tube in her abdomen. On 9/2/23, Dr. Owens performed the procedure and all was successful. She received continuous feeding through her tube that day and all day Sunday. On Monday, the difference was night and day. She finally started to eat (purees) and drink (thickened liquids) again. She was participating in therapy more and my heart was a little more at ease.

Currently, AJ is back to receiving up to 3.5 hours of therapy per day and under the constant care of the rehab unit. This time we are in the SAFE unit which is located away from most of the unit and is designated for brain injury patients. She is on low stimuli protocol, which means low lights, limited visits, little to no technology or tv and as much quiet as possible. This is to give her brain time to heal and recover without constant stimulation. If she becomes overwhelmed or overstimulated, she is very irritable and upset. She had a swallow study earlier in the week and was finally cleared for normal foods and less thickened liquids. That is improving every day, thank goodness. Her PEG tube nutrition is now only at night to ensure she is still receiving adequate nutrition.
Her physical progress is amazing. We have been back a little over a week and she's already graduating from wheelchair to a crutch. She can read to understand but struggles when you vocalize things to her.

During this time, I have been living in the hospital with her. Sleeping on couches, fold out things, eating cafeteria food or door dash and showering either in the room or planet fitness every couple days when Michael would come to give me time to leave. He would drive every few days to Dallas to give me a chance to leave for a few minutes and spend time with us. I can't leave her side for long, no matter how much someone insists on staying with her. After watching her go unresponsive and almost losing her there's absolutely no way I can. Even though, I miss my bed, my shower, homecooked meals, having AJ come tell us all about her day right when we're going to bed and all five of our cats, still can't do it. I attend every therapy session with her and i participate as much as I can. I advocate for her, probably to the annoyance of the staff but that's my baby and anyone else would do the same. We're closer to home and her aneurysm is filled but I still struggle to trust it's okay.

Although she is not the same 17 year old girl she was prior to July 18th, she's still here and thriving. She can sing a long to her favorite 90's hits or Michael Jackson, she's still everyone's favorite patient, she's still sassy and she's still spoiled as well as loved by her village. Life is going to look very different for AJ for a long time. Her senior year will not be what we planned and she might have to wait to drive "Megan" (the stallion), her mustang a while.
However, she is young and our mind as well as body can do amazing things.

AJ will have radiation to shrink her AVM in a few months, another surgery to replace the missing skull flap, surgery to remove the PEG and years of follow up angiograms to monitor her progress. Overall, her prognosis is good but we have no idea what the future will look like for her until we get there.

Over her entire journey, she has been supported by a ton of friends and family. An entire village she never knew she had. We are thankful to everyone who has supported and helped us thus far from family, friends, coworkers and even the staff caring for her.

If you read this far, thank you.

As someone so eloquently put it, this sort of thing is foreign to me but we are thankful for whatever help we receive in any form.
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    Organizer

    Jamie Coffman
    Organizer
    Riesel, TX

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