Help The Bush Family During Their Difficult Time

Greetings!

If you're here, you probably know our family. But, for those who don't - we are a family of 4 (Stefani, Ralph, Will and Sasha) - but we also live with my parents (Bill & Linda). Stefani, Will & Sasha all have mitochondrial disease. Will & Sasha have primary immunodeficiency disease. Will was recently diagnosed with Metabolic Cystic Fibrosis. Sasha also has epilepsy & severe adrenal insufficiency. My parents have their own health issues (my mom has mitochondrial disease and my dad is immunocompromised). Generally, life is full of a lot of medical ups and downs, but we're pretty used to it and can manage. Unfortunately, these past few months have been one hit after another. Many of our friends keep asking us what they can do to help - and I've really dragged my feet on the answer because, well - asking for help is definitely not my strong point. BUT, I realize that we've hit a point where it's not longer about 'me' - it's about our whole family.

SO...at the encouragement of several of our friends, here we are - asking for help.

If you don't know the backstory of what has led us to this point, let me introduce you to our novel of "You Can't Make This Stuff Up" (subtitle: Murphy's Law Landing Zone)

Chapter 1: In the Beginning

2024 started out with an unexpected change for our family. Due to medical issues, we decided to list and sell our house and my parent's house and move in together. The moved happened at the beginning of March. As many of you know, it was a challenging move - and the house we purchased had a lot of hidden and unexpected issues (for example - the first week alone we had to shell out 3k due to a pool leak that the sellers clearly knew about but did not disclose). Due to the medical concerns for all but one in the household, we had to take immediate (and costly) steps to remediate the issues. We thought that this was going to be our 'big drama' for 2024. Oh, how we couldn't have been more wrong.

Chapter 2: A Fly in the Ointment

In February, our son, Will, was diagnosed with MRSA and Klebsiella Pneumoniae, postponing his much needed trip to NIH (National Institute of Health) where he sees a rare disease specialist. He was schedule to have appointments, testing, and a procedure. He was put on a 2.5 month course of an antibiotic, re-cultured - and still positive for MRSA, which necessitated another round with a different antibiotic. He is now scheduled to go back out 2nd week of September (which we will have to drive, so that will be a costly trip).

Chapter 3: This Isn't What We Signed Up For

Meanwhile, our daughter Sasha had an iron infusion, Injectafer, on May 16th. We were told this was a 'safe' drug and that they rarely ever have any issues with this type of iron infusion. Within 36 hours of the infusion, Sasha had 102.3 fever and was in a full blown adrenal crisis. When she arrived at the hospital, Sasha was in shock. Her blood pressures were in the toilet and she was barely responsive despite massive doses of steroids to support her adrenal function. She was transferred to the ICU and then to the progressive care cardiac unit once stabilized (step-down ICU). She spent 4 weeks in the hospital. The diagnosis: Severe Renal Wasting Syndrome as a result of her iron infusion. You see, what the hematologist didn't tell us was that Injectafer is NOT safe. As a matter of fact, I came to learn through this ordeal that there have been over 70 lawsuits - including a large class action one - for this VERY phenomenon. Sasha should have NEVER been given this drug given her past medical history. We almost lost her because of the negligence of a doctor and also the lack of transparency from the makers of this drug.

Chapter 4: Meanwhile, Back at the Ranch

During Sasha's hospital stay, the first week both Ralph and I were up there - taking turns going back to the house to get items we needed. Once it was realized that this was going to be a marathon and not a sprint, I sent Ralph home so he could work (thank GOODNESS our boss was amazing and completely understanding and supportive during this time). There was a lot of driving back and forth to and from Orlando. Just before Sasha went into the hospital, Ralph had ripped all the cabinets and countertops out of the kitchen and we ordered new cabinets/countertops (because the old ones were so disgusting, damaged, and tobacco soaked that nothing we did covered/eliminated the smell). I had ordered the cabinets - Ralph was going to install them. Little did I know they would arrive unassembled! Ralph had to build them (and he was working long days to begin with for his job). We were told it would be 3-4 weeks max from when we ordered the cabinets to when the counters would be installed. Well, we're 5 weeks out. :/ The cabinet guys ordered the wrong upper cabinets and 2 cabinets were wrong for the island (but we still had to eat that cost?), and now the guy has to come and build the island cabinets to make it all fit. Because things weren't already enough of a dumpster fire, Sasha's bedroom window randomly fell in and shattered (I told Ralph that the windows were shady, but I didn't expect this!). Of course, nothing is ever easy - that window was a massive window that needed to be special ordered. The house is in absolute chaos (for those who know how OCD I am about 'order' and things being neat as a pin, you probably can get how much this drives me crazy). All the appliances we ordered when we first moved here have been sitting in my parent's living room --- and the entire house is a mess because there's no place to put anything until the kitchen and bathroom are both back together. We have been living off of whatever we can put in the microwave or in the oven as we have no way to clean dishes easily (we have a utility sink, but that's not ideal). Last weekend, Ralph had to take out the rotted vanity in our bathroom, build the new vanity, and put that in. So now we have no bathroom sink and no kitchen sink. My parents have their bathroom still intact, so that's at least one bonus. Countertops will have their final measure on Monday (7/1) and hopefully by Friday (?) of next week (7/5) we'll actually have a kitchen again. Until then, we're doing oven meals, takeout, or microwave meals. Yum (insert sarcasm there). We're hosting our nephew's wedding in 17 days and the house is just not ready (no stress or anything). Thankfully everything for the wedding was paid for ahead of time - I am so glad that was taken care of in advance! Really, Ralph has the weight of this house on his shoulders - most of the work that needs to be done can't be done by anyone but him. He's the one who has the skill and the ability to do things like scrape popcorn ceilings, retexture and prime said ceilings, paint ceilings, take down one ceiling completely, take out and put in new windows/slider, landscape, pressure clean the pool enclosure area and make some repairs/paint it. Despite all that pressure, Ralph just keeps plugging along and trying to just put his best foot forward. We are so blessed to have him in our lives.

Chapter 5: But Wait, There's More....

A day and a half after Sasha was discharged (Father's Day), Will woke up and told me he thought he was getting sick. I thought he was just trying to get out of doing stuff around the house, but by the Tuesday evening, it was clear he was coming down with something. Wednesday (the 19th of June), he ended up in the ER. He was diagnosed with Parainfluenza Type 4 and sent home. Thursday morning, he was so much worse. He had an appointment with Infectious Disease that afternoon, and he was direct admitted to the hospital from there. He spent the next 5 days having round the clock breathing treatments, IV antibiotics, and an antiviral. He came home the night of the 25th (my mom's birthday) and we were able to have a very late birthday celebration finally all together again.

Chapter 6: This is the Song that Never Ends...

Unfortunately, this road for Sasha is far from over. She continues to need daily labs in Orlando to monitor her severe renal wasting that is quite persistent and unpredictable. Why not just go to a local lab? Well, because we want the data to be consistent - this is the same lab equipment we've been using for all her other draws, AND - we need results immediately - and we can get them within the hour when we go to the AdventHealth lab. This allows for us to make any adjustments in real-time as necessary and the doctor has immediate access to the results as well. If we go local, that access will be much more difficult and reporting will be delayed.

Sasha's appointment yesterday (6/26) was a tough one - the doctor wants her to have her central line placed again because she's unable to eat or drink much at all. The Herculean doses of potassium and phosphorous that she needs to stay 'low normal' are SO hard on the body and she's really struggling. She's literally dry heaving in her bedroom as I type...and that sound is unfortunately nothing new in our house since she returned home. How sad is that?

Chapter 7: The Cost

Since May 17th, Sasha has had to endure more than 50 needle sticks (hundreds of labs have been run as they were checking her electrolytes every 4-6 hours at one point), 1 failed and 1 successful central line placement, a bronchoscopy, a brain MRI, 3 24 hour urine tests, , a chest CT, constant cardiac monitoring, and 3 chest xrays. Since she's been home, 3/4 of her days are either spent sleeping, dry heaving, throwing up, or crying. She's absolutely miserable.

Speaking of 'enduring' - in addition to all the things that Sasha endured physically, it doesn't even begin to scrape the tip of the iceberg of the emotional trauma that she, and quite frankly, the rest of our family has endured. Sasha literally thought she was going to die. Our family absolutely was terrified we were going to lose her. The medical team repeatedly told us that they were trying their best, but that they had NEVER seen anything like what Sasha was experiencing and that there was literally nothing out there on how to treat this phenomenon. I spent countless hours researching and learning about how the kidneys work, how this drug can damage the kidneys, and connecting with others who have had this happen to them. Having to read all the horror stories is HARD.

Sasha is mourning the loss of normalcy - she was feeling pretty decent before this - working at a farm (and she loved it) - and she had a routine....and now, ALL of that is gone. Imagine being 18 and having your entire life ripped away from you and every day is spent feeling like crap, stressing about your numbers (and whether or not they're going to tank and something bad will happen to you), and trying to manage the fallout of the severe renal wasting with her severe adrenal insufficiency - it's a lot. My heart breaks for her. I feel absolutely powerless as her mother to shield her from this and I can't fix it.

During the hospital stay, my husband had the tough task of having to go home and work - while his daughter is critically ill. He couldn't be with her like I could and that tore him up. My parents stayed home to hold down the fort with the dogs, and Will was also home helping take care of my parents and making sure my dad and mom got to all their appointments as their car had an issue that put it in the shop for almost an entire month.

And the costs don't end there - hospital food is CRAZY expensive, I have food allergies, so I tried to get simple stuff from Publix/Target nearby that I could eat (but honestly, it isn't that easy - much of the stuff I can eat must be made from scratch). There are 2 places in Orlando that I know I can eat Pizza from, so I ordered from them...a lot. Let's just say, I'm over pizza. Sasha hated the food that would come up - it always came up cold, soggy, and smelling like a cafeteria dishwasher - so, whenever we could, we'd get food from their Lakeside Cafe as a treat. That girl was going through enough, if I had to pay $20.00 a meal (yes, you read that right) for her to enjoy something, I was going to do it when I could. And, on the home front - with a nonfunctional kitchen - extra costs were in there too.

Once Sasha was discharged, we began the 'fun' task of driving daily from Cocoa to Orlando to do labs to monitor her electrolytes and make adjustments.

Driving back and forth to Orlando is expensive - gas and tolls are ridiculous (over $8.00/day in tolls alone).

Chapter 8: No end in sight.

This is how they say it's going to be for a while now. We really just need a break. We had planned for a road trip in August - but with everything going on, I don't know if that's going to happen anymore. We tapped into our savings for that trip to make ends meet now.

Not counting our expenses for food at the house, since this whole ordeal began in May, we've spent over 2,500.00 in food, gas, tolls, and other items that we needed (like an air bed as sleeping in a chair was just not cutting it after 2 weeks).

Between the unexpected house expenses and these unforeseen costs because of Sasha's injury caused by Injectafer, we have depleted our savings. We are barely scraping by. It feels like every time we have a leg to stand on, life knocks us down again. SO frustrating!

SO....that's where things stand. If you've made it through our "Novel," I commend you. I've had so many friends ask 'How can we help?' and the reality is that prayer is first and foremost the most important way you can help. If there is only one thing you are able to do for us - it would be that we would ask you to pray. I won't pretend to know or understand why we have been in what feels like an unending season of one thing after another, but what I do know is that God is with us in it all. God is still GOOD despite ALL the bad happening. HE is Faithful and we trust and fully believe that He will lead us through this.

If you feel so led to help in other ways, here is what we need the most:

We need some financial help to get back on our feet - so any donation, big or small will help. We have a few big bills coming up that we have to pay that will leave us with little to spare after they are paid and, with all the unexpected repairs, we just can't seem to stay afloat.

If you're not a fan of just donating money (I get that):

Gift Cards to Wal-Mart/Target/Publix are always welcome. We mostly shop at Wal-Mart as the prices are the cheapest. We have a Wal-Mart and Publix 5 minutes down the road from us.

Gas Cards - We have Chevron, Marathon, Flying J, 7-11 near us.

I also have a little Amazon Wish List for Sasha - there's not a ton on it, but I put a few things on there I thought she'd like: https://www.amazon.com/hz/wishlist/ls/2H2HW6WLCOKGP?ref_=wl_share