Ella Greenwood Rare Medical Diagnosis

I am Ella's Mom and please stay patient with me as I explain this complicated situation that is Ella's Body.

In the early fall of last year, Ella started feeling ill, had strep quite a few times & overall felt pretty bad. She started having petechiae on her limbs, fevers, extreme nausea, and pain when eating to the point that in February during a GI Appt at a specialist, we were sent to UNM Children's Hospital with them thinking she had Leukemia. During her workup there a dr came in & suspected a very rare medical condition called Nutcracker Syndrome. Yes, it is a VERY real medical condition. Many of the doctors had only vaguely heard of it but this specialist was right & multiple CT Scans & ultrasounds confirmed that she did have this. She was hospitalized on the Peds Specialty Floor for a few days & they also found that her Eosinophilic Esophagitis wasn't doing great & she had irritation in her stomach as well. She went through scopes & started on medications to heal the stomach & was sent home on medications & appointments for monitoring her care.

Ella has diagnosed Mast Cell Activation Disorder - diagnosed since she was little [around 5] and also EoE [Eosinophilic Esophagitis] which fell upon her hard when she was young. It caused her to go from completely healthy, hardly ever sick, no cavities to suddenly SO ILL, teeth rotting, losing weight & not keeping it on, having allergic reactions to hot & cold temps, cleaning products, air quality, smells, emotions, textures of fabrics, and SO MANY OTHER THINGS, including THE SUN. We spent a summer with her feeling like she was being electrocuted & going into painful hives, etc. when outside. This still happens when out in direct sunlight or even shaded sun for too long of a time period. We have to be so careful about temperatures, emotions, etc. to keep her stable. She was on elemental formula for weight gain until just about a year ago and she was asked in February to add extra calories to her diet. Which is harder than it sounds to do. She is a good eater when not nauseated & already eats plenty. She is NOT out of the woods for needing formula again should she not keep weight on in a more steady manner. She has also had food allergies almost all of her life & at one point in 2016/2017 she only had about 8 foods safe for her to eat. Even multiple forms of meat proteins were a problem for her, causing immense bloating & trouble passing stool to the point of needing Xrays every few days to evaluate.

In 2017 we packed up, her dad took a demotion at work & we moved to Houston for her care at Texas Children's Hospital. She was in multiple clinics & finally got released from acute clinics after being in remission from EoE. This is rare for many kids & it was a HUGE victory for us. I also have EoE so I know parts of what Ella goes through with it. It is caused by food and environmental allergies. So its complicated to get a hold on. I have a ringed esophagus & often choke on food & even water due to mine. Ella has many similar symptoms & we both battle silent reflux which further harms our teeth. It is A TOUGH thing to monitor, fight & treat.

Fast forward to now. Nutcracker Syndrome is when the arteries [Superior Mesenteric Artery - SMA & the Abdominal Aorta] on the left side of your body literally squeeze & compress the kidney vein to where there is severe compression, problems with blood flow, etc. It causes TREMENDOUS damage to the kidney, pain, nausea, headaches, issues with blood pressure and the list continues, unfortunately. Sadly, Ella's Kidney Vein was compressed in TWO places and quite severely. Additionally, we have learned that when there are vascular compression issues that your body has no choice but to essentially reroute things, which only further complicates things, damages veins, etc. It often leads to congestion in the pelvic area for women. Simply put, it is COMPLICATED and the damage is LONG LASTING.

One of the first surgeries they try is an LRVT [Left Renal Vein Transposition] in an effort to help preserve the kidney, its function, etc. and especially due to her young age & the deep need to not compromise the kidney. She had this surgery done on April 19, 2021 & spent the week in Pediatric ICU. We returned home to learn that she also had an intestinal blockage again & also that the surgery had been a failure. Multiple CT Scans with & w/o Contrast confirmed that her kidney vein is severely scarred from years of compression & is collapsing on itself. Usually, when they do LRVT Surgery, they harvest a vein in the upper thigh but Ella did not have enough vein length. Just another unusual situation in her body complicating things. If they were to do a plastic or artificial one she would be on blood thinners for life & not be allowed to play soccer, etc. THAT WAS HER BIGGEST WISH FOR LAST YEAR & WE PROMISED FALL SOCCER WOULD HAPPEN. It obviously was premature of us to promise this & lesson learned to not do so again. She is incredibly disheartened about it.

Currently, she is experiencing symptoms & reduced kidney function that is worse than before LRVT Surgery & also more dangerous to her body. She just had treatment for a Staph Infection in the kidney/bladder. Her surgeon is having us come back to UNM next week for another diagnostic venogram. This is done through the groin & Ella is required to be awake for it, with NO pain medication or sedative because of age complications & her surgeon & his team not being a pediatric treatment team. It's complicated & heartbreaking. Ella is having a VERY DIFFICULT time with the anxiety of all of this, the daily pain, nausea, headaches, etc., and just the fact that she spends much of her life in bed or on the couch or bathroom floor. She isn't able to do much that is physical & she has more bad days than good at this point. In fact, it's more like good hours than days. She spent her birthday sick, just every day is filled with nausea almost all day & night. She also isn't sleeping many nights. So we live a very odd schedule right now. It reminds me of having a newborn. Were up off & on & always tired, to say the least. She is struggling tremendously with the mental, emotional & physical aspects of all of this.

We had a medical team from Utah contact us. They have tremendous pediatric experience & are reviewing her case to make a decision on whether we do an Auto Transplant [moving of the kidney] or Nephrectomy [removal of kidney] due to the compression of the kidney vein, much damage is done & unfortunately, the longer this sits with nothing being done, the worse the outcome overall. There are actually two providers in Utah with much experience & ability to help her - it is just a matter of getting her report from her upcoming venogram & moving forward with a plan.

We will first have to be in Salt Lake City, Utah for a Renal Hilar Block Procedure. This is done as a measure of testing the kidney & giving them an idea of whether the surgical procedure will provide a cure/treatment. The goal is to be pain-free for a specific amount of time after it is done, which I believe is 24 hours minimum. This trip is over 8 hours for us and we are in a situation of having one car for travel due to one car being on its VERY LAST LEG [there is no other way to explain this]; meaning leaving her dad & siblings here without proper transportation. We will need to be in SLC for a specific amount of time before & after that test/procedure and then afterward it will likely be an Auto Transplant Surgery, also in Salt Lake City. It is also entirely possible that she will LOSE HER KIDNEY.

For both procedures, it would be best for us to fly [from Durango, CO - our nearest airport to SLC, UT] due to the distance & danger to her being in the car in desolate areas as well as her dad needing my car here at home. Also, with the surgery being done in the groin & pelvic area wearing a seat belt in the car for 8 plus hours is a tremendous challenge & danger in addition to being painful. It would also mean pulling over anytime she needs anything because its just me driving & caregiving. The Auto Transplant will mean a week stay or more in the hospital and that is if nothing goes wrong. There is NEVER a way to predict those things. During that stay, it means I will need to be there, to eat, etc. The last surgery she was so nervous that she got in the car with no shoes & didnt pack any, as well as forgetting her toothbrush & other things. Thank goodness for DoorDash & Target Delivery in big cities, but it is EXPENSIVE & means leaving her alone to go down & meet someone. In turn, you risk missing the doctor on their rounds, etc. Its just a LOT to manage.

The surgeon told us we are looking at about 3 months start to finish from when a decision is made to the renal block and have surgery and that's if it all goes well. This procedure has proven to have great risk & probability for recurrent UTI's, Bladder Infections, Kidney Infections, etc. and we know to anticipate this & expect the downtime & medical treatment needed. She has already experienced this post LRVT Surgery. We had hoped her surgery in April would have been the end of this so you can understand how hard this is to know what to expect but more than anything it TAKES OVER YOUR LIFE and changes everything. It is INCREDIBLY TAXING IN MANY, MANY WAYS on all of us and especially in a financial aspect. I will need to be home solidly with her for a few months & that is with everything going RIGHT & NO COMPLICATIONS. She will not be returning to public school in the fall as planned so she will need me here for that as well. It is simply not a choice we have, it is just our reality.

Our other two kids sacrifice a lot with all of this. Her dad is also walking through a tricky medical situation with his blood & the oncologists have been searching for a rare tumor called Pheochromacytoma. We still have a Nuclear Scan called an MIBG Scan to complete in Albuquerque at some point this summer. We are trying our best to handle both things but putting our daughter at the front of everything. However, should that tumor be present - he is at risk every single day of not living should it decide to dump large amounts of norepinephrine & epinephrine in his body. He had high serum blood markers & 24 hour Urine Collection indicating its presence, along with incredibly high blood pressure which multiple medications weren't reducing. He also learned that he has one kidney larger than the other & is on medication for that. He is going to work daily through all of this as he is our insurance provider & he has been fighting nausea with some vomiting for the last 3 weeks almost.

We are doing our best to stay patient and get through this but watching our daughter lose a lot of weight, be nauseous almost 24/7 and hanging out on the bathroom floor is heartbreaking. She has entire nights where she isnt able to sleep due to pain & nausea & she puts on the bravest face & says "its ok" but honestly, it is NOT OK. NONE OF THIS IS ACCEPTABLE. SHE IS 14 & SHOULD BE LIVING FREE, PLAYING SOFTBALL, SOCCER, RIDING HER BIKE, AND DOING ANY OTHER CRAZY & FUN THING HER HEART DESIRES. Her sisters deserve the same but its a family commitment for all of us & we are all here for each other. Her older sister has POTS [Postural Orthostatic Tachycardia Syndrome] as well as Ehlers-Danlos and has already had knee surgery at 13 to reattach her kneecap. We are a family that gets through hard things & then gets through even harder things after that but this has officially been what keeps breaking us - mentally, emotionally, physically & especially financially. The cost for travel alone is just astounding, not including the wear & tear on our car, the medical care, medications, etc. Its been a full-time job for me to work between caseworkers for our insurance, patient coordinators, covid testing for procedures, appointments for Ella & her dad, to handle emergency situations that arise, etc. We are at the ER with Ella a LOT. I am also neglecting my own health in handling all of this. There are days that I am on the phone literally ALL day between providers. Today was another one of those days & its NEVER planned. I am at the mercy of what is needed & its defeating some days. I did break down today & cry on the phone. Its just too much.

Under NO CIRCUMSTANCE do we expect anyone else to be taking care of this or of us. However, we do need help and will be in need for a bit. That's just how it goes. I do not have contact with my family with the exception of my mom calling on our kids birthdays & sending flowers. Thats it on my side. Our support system is limited & we have no family where we live. They are 5+ hours away. Our family is not and has not taken any fun trips or vacations, we don't drive a new car, and we don't have all kinds of shiny technology, toys, etc. We are at home, trying to stay safe with the second round of Covid, being required to stay isolated for procedures & due to not being able to do much physically. We take car rides occasionally but not often to get Ella out of the house but that's rare due to the pain for her, were trying to stay cool in this heat & we spend a lot of time in our garden to stay sane & also have something to look forward to that is positive, in addition to growing our own food & teaching our kids about sustainability.

Being vulnerable is TERRIFYING & hard and takes bravery that one can not imagine facing. Some days I feel like I can handle whats been pushed at us & other days I feel like I am clawing my way up a mountainside with my fingernails being ripped off as I go along. It has become emotionally & mentally painful for me as her mother, caregiver & the person who is doing the jobs of 50 people in my house because I will NEVER stop taking care of the people I love more than I love my life itself.

If there is any judgment or upset, that is for each person to decide but please know that there is NOTHING we could have done to prevent this. I have had those comments made & it hurts me & our family so much when we hear them. We understand that this is new & unknown to many so questions do happen. Let me assure you that this is the body God gave her & the challenges that came with it. As parents, we would do ANYTHING to make this better, take it away, etc. including taking on these challenges in our own bodies as a trade. More than anything there isnt enough preparation or anything that makes this easier or manageable. NO ONE WANTS FOR THESE THINGS. More than anything - we contribute financial every single time we have seen another needing help. Sometimes its less than other times but we always help. We spent all of the holiday season buying groceries for others, diapers, giving away items for gifts for those in need, and just sharing. We believe always in taking care of others. We love to help. That has been a hard change for us - having to stop helping a local animal rescue, having to ask for & admit that we need help, rather than being the helpers. We wish so much that we didnt have to ask for this help. I dont know what dollar amount to place on this either because we have outrageous medical bills with more coming. Each surgery is around $30,000 to start. Insurance doesnt cover all of it - that is just how it goes. Topping it off, right now it will be a very long while before we even begin to recover or find even ground from any of this. I cant even let myself think about Christmas being around the corner. Its an additional stress that we just do not need.

Ella has a support animal deemed necessary by her doctors, in addition to a certificate of being a very physically ill person from her current surgeon. Her diagnosis & condition are very real & very serious. Her quality of life is significantly different from other kids her age, as well as most adults.

I am sure there is plenty that I forgot but please feel free to message with any questions. If you prefer not to use Go Fund Me, we do have a family paypal & venmo. I will also keep everyone updated on her situation as it changes or procedures take place. The next will be us leaving for Abq, NM on Sunday [07/18] & we will be there at least through Monday, possibly later.

Please share this with others if you feel called to do so. Our family is INCREDIBLY GRATEFUL & truly appreciative of any and all help, prayers, positive thoughts, vibes, well wishes, etc. I just ask for everyone to remember what life was like for them as a young teen. Then add to that being in Ella's situation & navigating that. Her dad & I truly do NOT know how she does this. Adding to it - she is deeply concerned about the possibility of addiction with pain medication so she refuses it as a means of handling the pain while at home. She only has meds administered while in the hospital & even then says no. However, during her last stay - when they stopped them her blood pressure was significantly elevated among other things & her body just didnt handle the pain well.

Thank you always for the love, support, prayers, kindness, and everything. We are so humbled, grateful & are depending on those comforting connections right now more than anyone can know. Also, we know that there are FAR harder & worse situations & we keep trying to remind ourselves of this because it could simply be worse. However, there are times when staying positive & hopeful is hard & almost toxic because this is our reality & it is draining us of so much.