We could use your help. I know there are 2 types of people in this world so i will break this down into both. The first will be quick direct and to the point. The second part will be for those that like more information.
On June 27th 2024 our lives changed forever. My dad had a massive stroke that evolved over the next 10 days slowly taking more of his ability to move his right side, speak and eat. By the time the stroke stopped evolving it left him completely paralized on the right side. he is unable to eat or drink and required a PEG tube. On july 12th my daughter went into emergency surgery for a shunt infection. they had to remove all her tubing from her neck down. she has a exterior shunt coming out of her neck. She has been in the hospital since July 12th receiving IV antibiotics. Tuesday July 23ed she will have another surgery to replace her shunt and catheter in her brain and well as replace all the tubing to her stomach. They will remove her shunt and catheter on the right side of her head and move it to the left side of her head. this requires new holes to be drilled in her skull to place the catheter in the ventricle of her brain. I have had to temporarily step away from my job to care for both of them. Any help is greatly appreciated weather its prayers, good vibes, financial donation, gas card, food cards. we also need to move my dad upstairs requiring us to remove carpet, lay flooring, make his bathroom handicap accessible as well as fix our walk in shower for it to be safe for use. fix our railings on our porch so he can safely get up and down the stairs or possible build a ramp. When the time comes we will need help moving our bedroom to the basement and his bedroom to the main floor. we will except help with anything at this point. We are overwhelmed and running on fumes. The last time I had a home cooked meal was 26 days ago. So nothing is to small. We appreciate all the love and support. Thank you
Part 2, its a a long read.
On June 27th our lives changed forever. I received a phone call that my dad was taken to the ER from work for stoke symptoms. After a CT scan showed no problems he was admitted to the hospital for an MRI in the morning. The MRI showed he has 2 strokes simultaneously that affected the same area on both sides of his brain. Although super rare he seemed to recover very quickly was sent home Monday July first with only minor deficits. He was home 16 hours. The next morning I found him on the floor with very little movement on his right side. The ambulance was called and he was rushed back to the hospital lights and sirens. Another MRI showed the stroke had evolved. Taking more of his movement on the right side, every few days he would get better then we would backslide we repeated this pattern over the next week and a half. He would lose function then gain it back. Until the final backslide. It took all his movement on the right side, paralyzed his right vocal cord and took away his ability to talk or eat. I spent countless hours at the hospital talking with Dr. figuring out what happens next. The answer I kept hearing is there is nothing we can do. The neurologist keep telling us how rare the stroke was and that with the area it affected complete paralysis is expected. The week of July 7th was a week full of unknowns and worse case scenarios, it was also the week family returned home and being his primary care giver I had to navigate a very scary situation alone. I was juggling the kids, My dad, and had just went back to work.
On Wednesday July 10th Makenzie showed me a red spot on her incision from a shunt revision she had had back in May. I took a couple pictures and had her keep it dry. Thursday I got up went to the Hospital to be with my dad and talk with the Dr. My sister said her goodbyes and I took her to the airport. I went to my first day back to work since all this had started. When i got home from work Makenzie showed me her chest again and I realized at that point i should probably send a few pictures to her neurosurgeon just to
get a pair of eyes on it. We had plans Friday the 12th. My husband would take both Isaac and Makenzie to Madison to go adaptive water skiing and I would go to the hospital to be with my dad that was having surgery that day. I woke up Friday morning to the neurosurgeons office calling. They wanted to see her in clinic this morning to just see the spot in person. Dr. Iskandar was in surgery all day but they wanted her brought in to be seen between his cases. We needed to have her there in 1 hour. The plan stayed the same except Rob would run her to see the Dr then they would go skiing. I would go to the hospital for my dads 130 surgery.
I made it to the front door of my dads Hospital when my phone rang. I don't remember much of the conversation except that she had an infection and she was being taken to emergency surgery. I turned and made a mad dash for the car. Driving to the children's hospital seemed like it took hours. I was getting updates as I drove. They were tapping her shunt. She was being taken to pre op. I couldn't get there fast enough. But also knowing that my dad to had surgery that day and that if I wasn't there he would have to face it alone. it was already a tough surgery mentally and I knew i couldn't let him face it alone. The internal struggle of being torn between 2 people that both desperately needed you. I called my best friend, she spung into action and had someone sitting with my dad through his surgery and coming to Madison to pick Isaac up from the hospital. Makenzie was taken into surgery later that day and had all of her shunt tubing and valves removed from her neck down. A external drain was placed and she was admitted to the hospital an hour away from my dad. She was started on some very potent antibiotics and cultures were sent off to be tested for bacteria. That weekend i would stay over night with Kenzie one night then trade off with her dad so I could go see my dad and talk with his dr. Last Tuesday the 16th Makenzie was scheduled to have surgery they were going to go in and put everything back. no bacteria had grown. Things were really looking up. I had went to my dads hospital that morning to meet with a social worker. Was talking to my boss on the way to Kenzie's hospital about how she would be home in a few days, no infection had been found. There was a light at one of the tunnels. I got to the parking garage and the phone rings, It was the neurosurgeon. He asks are you almost here? I said I'm in the parking garage. He said ok ill wait, see you when you get here. Never a good sign. I made a mad dash for her room. When i turned the corner to the hall her room is on he was standing there waiting for me with his hands clasped together. He said the cultures grew, we can not operate today. Every sample I sent to the lab grew a bacteria. We have contacted infectious disease and they will be in later today or tomorrow morning. We will put her on the schedule for next Tuesday, We will take it all out even the tube in the ventricles of her brain, her shunt that was placed as a baby and start all over replacing everything on the other side of her brain. Her new shunt and tubing will be on the left side of her head now. Which will require a new hole to be drilled in her skull to place the catheter in her brain. General surgery will also be by as they will need to assist with this surgery. My world stopped. In that moment I realized just how sick she is. Wondering how i was going to juggle both hospitals with both of them having very serious medical problems. I have had to take a leave from work, take on my dads bills, as well as the cost of gas, food while at the hospital or traveling to and from. We have exhausted everything we had saved, we are panicked trying to figure out how the bills will be paid while we navigate this. Any help is greatly appreciated weather its prayers, good vibes, financial donation, gas card, food cards. we also need to move my dad upstairs requiring us to remove carpet, lay flooring, make his bathroom handicap accessible as well as fix our walk in shower for it to be safe for use. fix our railings on our porch so he can safely get up and down the stairs or possible build a ramp. When the time comes we will need help moving our bedroom to the basement and his bedroom to the main floor. we will except help with anything at this point. If you prefer my venmo is @brjmorris or cash app is $buterflijen. We are overwhelmed and running on fumes. The last time we had a home cooked meal was 26 days ago. So nothing is to small. We appreciate all the love and support. Thank you
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