Hello Friends and Family,
This is a long post but so please do not feel obligated to read this, I just know many of you are just finding out about Nelio and may have a lot of questions so I thought it would probably help if answered a lot of those questions upfront and that would save me from having to answer them individually. Please forgive any typos as I am worn out at seeing double right about now. So here it goes...........
On August 24th, 2018 the day before Nelio's 40th Birthday he went in to have his fourth brain surgery. I know many of you may have only known about his first two surgeries as they were nearly back to back but due to Nelio having seizures and suffering from something called SUDEP (Sudden Unexplained Death in Epilepsy) and not coming out of a couple of his seizures without the help of resuscitation we opted to do a fourth surgery that was supposed to help stop his seizures. There were many times during the past almost three year Journey that we thought we had turned a corner and verything was going to be ok only to be hit again with something else. Much of this we kept private and never announcing on fb publicly.
As many of you know we discovered Nelio had a brain tumor back in early 2016. This happened during the finalization of the adoption of our 3 children Danica, Jimica and Anderson and all after one long year of weekend overnight visitations. We were eagerly awaiting the finalization so we could all be together as a family. During that same period of us discovering that Nelio had a brain tumor, the state agency questioned wether we were fit to raise our adopted children due to Nelio's health issues and they made him go through another physical. They gave us a hard time and it was one thing after another but we fought to ensure that they did not end up back in foster care after already spending nearly 7-8 years in the system and they were not always placed together as a sibling group. Having already lost so much in their young lives including being separated from their other siblings and loosing their brother Edrick (age 7) due to a drug overdose we were not going to let them end up back in the system. So during everything that we were already going through with Nelio we fought to keep our babies together. They state agencies had already told their current foster mom that if they did not find an adoptive family soon that they were going to pull the kids out of her home and place them with another foster family which made absolutely no sense at all. This just was not an option for us..... these angels had already been moved to 10 different foster homes and my daughters were always separated from the boys Anderson and Edrick until their current foster mom had chosen to keep Danica, Jimica and Anderson together Edrick had already unfortunately passed).
We made it through the first two surgeries (They were back to back) and then 27 days post second surgery Nelio got meningitis of the Brain from an infect CF leak in his brain which had happened during the second surgery. They had denied that he had a CF leak and when taking out his staples at a follow up visit the nurse was not using common sense hygiene practice and I asked her to stop taking the staples out the way she was doing it. She complied and when she was done their was still a huge gap along the entire incision area as this was the 4th attempt to take out the staples but his would was not healing due to a side effect of one of the antibiotics he was on. Part of the incision was bleeding so I told the nurse surely you are not going to send him home like this it looks as if he needs stitches to hold his incision together...she told me she agreed but had already asked the Doctor and he had told her no but she said she would ask again at that time he came in (not happy to be interrupted) and told us no he did not need stitches and would be fine ....four hour later at my house Nelio started to have what looked like tremors and his skin was turning red and hot. I took his temperature immediately and it was 99.9 I went up to get a hospital bag and by the time I got back downstairs ( a few minutes max) and took his temperature again he had 104.4. I got him in the car with the help of my Aunt who was in town and flew to the hospital where they decided to do another emergency brain surgery. This was the most painful surgery already fighting an infection and reopening his entire head where it had not even had a chance to heal. Nelio always being so strong and having a high tolerance of pain and many times even refusing pain meds was in complete agony. His pain level was so bad I could not bare it. The drys had said they had given him the legal amount of Morphine, Hydrocodone, Dauladin and Tylenol IV and they could not give him anything else but nothing seemed to work that he would have to wait it out. That was probably the longest few days of my life and I am sure for him as well. Eventually the pain subsided and several days later we were headed home and hopefully with all of this behind us. Our family had nearly just doubled in size and Nelio was going to need a few months to recover so I got to work and started growing our team so we would have someone to cover all of his shifts as we did not really know how long it would be before he was back.
Nelio bounced back pretty quickly and within a couple of months was back to work feeling great. Everything was going great until New Years day of 2017 in our hotel room in Gatlinburg, Tn. when Nelio had his first seizure, a Grand-Mal seizure (The Brain Surgeon had told us this might happen but we had thought that we were in the clear at this point) The Grand Mal (Clonic-Tonic) Seizure presented itself with an Aura/Hallucination which was very scary for all of us as none of us had ever experienced or seen one before and we did not understand what was happening to Nelio as it came on suddenly as we were all about to head out to go Ice Skating. The following seizure was extremely convulsive and lasted a very long time (A Tonic-Clonic seizure lasting more then 5 minutes is considered a medical emergency) when it ended Nelio was not breathing and needed to be resuscitated this was one out of three seizures that Nelio experienced SUDEP within the following year and half. Each time Nelio was given a new medicine and told that the seizures should not happen anymore and that was true bit only for a little while but when we would least expect it and think we had turned another corner he would have yet another one.
After researching all over the internet and trying to get the Dr's here in Fl. on his Neuro team to understand his seizures were not like any of the other tonic-clonic seizures I had seen online and them still not understanding I started to Video his seizures to show the Dr's. Then finally after his Nuero Dr saw one of my videos he agreed they were different and they decided to do a sleep study on him. During the sleep study only one day in to it they witnessed first hand what I was talking about and Nelio had a whopping 12 minute seizure and immediately became a candidate for a 4th Brian surgery since he was at high risk of SUDEP (Sudden Unexplained Death in Epilepsy) they also discovered that the seizure activity was getting closer and closer towards his motor area and that they needed to do a dis-section to stop the seizure activity from spreading. They assured us that it had a high success rate and that Nelio had a 99% chance of being seizure free and that there were risks but that they were extremely rare.
So a day before Nelio's 40th birthday he went in for his fourth brain surgery. We were told that the surgery would only last probably about 4-5 hours but could go as long as 6 and no longer but not any longer then that as that was all the time that they had reserved the surgery room for so he would definitely be done by then which would be around 2pm. We had arrived at 5:30am that morning and they took him back for surgery around 8am. 2pm came and went and I started to get worried the 3, 4, 5 and still not out surgery then around 7:30pm they notified us and told us they were taking him to recovery. When they let me go back at around 8pm I noticed something was wrong immediately. The recovery nurse was on the phone with the dr and I noticed what looked like him having a seizure and something was wrong with his left side. He was paralyzed on his left side.
The doctor whom was already left the hospital and was on his way home and had never asked to speak to me at all ended up coming back around 8:45pm to talk to me and explained to me that he had accidentally clipped the SMA area of the brain and my husband now had supplementary motor area (SMA) syndrome. I was scared and did not know what that meant but I did know that we did this procedure to prevent seizures and it clearly looked like he was having one right out of surgery and after such a long surgery and him not able to communicate with me at all like he was able to after the last few surgeries in the recovery area, I was terrified. Little did I know that what was initially supposed to be a five day surgery with the hopes of being "better then ever" was about to get even worse.
Five days came and went and Nelio endured so much mis-treatment I could not even keep up with it. From not properly cleaning his incision area or offering to assist with baths as he was to heavy for me to move on my own, to laying in food that had leaked from a feeding tube for 5 hours after I asked multiple times for someone to come in and help lift him so I could change the bedding myself, horrible post care, dis-locating his left shoulder, having him suffocate in his own vomit twice after NOT following standard procedure to never lay a patient flat when they have a feeding tube and then giving him pneumonia which they denied until I escalated it and demanded that they give him an x-ray which confirmed what I already known that he did in fact have pneumonia and on top of that a collapsed lower left lung, GI issues, bladder issues and then finally finding on the 11th day which was September 4th, after he was balled over in pain and another cat scan, that he now had several blood clots in his lungs and the largest one was laying on his heart.
After studying the clot they decided to move him to the cardiac ICU and prep him for a possible emergency surgery to dissolve the larger clot that was very close to his heart. After a couple of days and several medical teams discussing his case (due to the many issues he was now having due to the neglect he had received )they decided not to do the surgery as the blood thinners that they needed to use to break up the clot by using a small camera device to go in his lung could cause him to have a stroke in the brain as they typically one do this procedure if the patient is 90 days post op ,especially with brain surgeries as there is a higher risk of bleeding and therefore a higher mortality rate. They started him on seizure Coumadin right away and told me that this blood thinner would not shrink the clots he already has but would prevent him from getting new ones and that was the best they could do for right now and that due to the size of his clot he was going to need to take the very serious drug Coumadin for 6months to a year. For those of you who do not know this drug puts you at higher risk for internal and external bleeding and it is NOT a drug you typically want to give to a patient whom is only 11 days post op for risk of bleeding out in the incision area. Nelio could not bare the pain the clot was causing and was asking for morphine on a regular basis. After about 5 days and albuterol breathing treatments he started to get some relief which got him moving again and after 26 days and several other hurdles along the way he finally came home.
Nelio currently is still dealing with the side effects of the SMA syndrome the doctor gave him when he accidentally cut into the wrong part of his brain. This Syndrome causes paralysis (which he has made great strides in and now only has paralysis of his left side and weakness) and Cognitive and balance issues. He can no longer work at-least for right now and has a hard time holding a thought or a conversation for more then a few seconds at a time. He also has problems with sequencing and processing. He has lost 30 lbs in the hospital in only 26days and is very weak and has balance issues that make it where he needs a walker or someone holding him when he stands and walks.
I know many of you who do know what is going on have asked how you can help ( some of you several times) and I appreciate you all so much. I have always had a hard time asking for things and we never expected any of this to happen and really believed the doctors when they told us that Nelio's surgery should have a recovery time of only about 5 days and that he would be feeling better then ever and completely seizure free after the surgery.
Nearly a month later after 26 days in the hospital here we are with bills pilling up, to many dr appointments to count, 100 errands, to run, things breaking down left and right including our fridge and our AC and so much more.
Nelio needs someone with him at all times and while he was at the hospital he had a heart monitor and several blood labs being done a day to measure oxygen levels and blood thinning levels which gave us some comfort that this giant clot that in his lung laying next to his heart was being some-what monitored and that if it did move we were right there in the hospital, however it seemed the longer he stayed in the hospital the worse he got and the more new diagnosis were being given.
I have received so many calls, messages and texts which I am so very grateful for but many I just honestly and simply have not had a chance to respond to, but please know it’s not because I don’t care it’s simple because there is just not enough time in the day right now for all the things that need to be done.
This has been so much harder then his last three surgeries and so many unexpected things have occurred and the initial hope of a 5 day recovery time quickly turned into something that we know now will take much longer then we had initially anticipated to recover from possibly months and a few things may never be the same but the doctor says only time will tell.
Nelio has endured so much during this past 26 day stay at the hospital but I know he is a fighter. We (The kids and I) call him our superman. He has been through so much and he still keeps fighting.
From the SMA Syndrome initially paralyzing him completely on the left side ...to coming out of surgery having seizures, nurses accidentally dislocating his left shoulder, pneumonia, a collapsed lung, G.I. issues, bladder issues and blood clots in his lungs this warrior has fought a good fight and I know will be back in the ring again soon. Right now he needs rest and has slept pretty much all day and every day since he was abruptly and unexpectedly discharged on the 17th when they messed up his paperwork. We decided after the nightmare experience at the hospital and so many ups and downs that we are going to try our luck at home and decided to not fight the discharge orders that were never even signed. (Seriously... not kidding)
As far as the Home-front Nelio had already not been driving this past 2 1/2 years due to his seizures so that was already a hardship on the family especially with 5 kids. Having seizures prevented him from being able to do several things like cooking using a knife to cut a tomato, going in the garage without telling someone etc. We have now went through almost three years of Doctors telling us he's fine and good to go to being back at square one. It has been a crazy roller coaster journey and has definitely taken it's toll on all of us but we have our faith in God and that has gotten us through all of this and I believe even brought our kids closer together. They have truly been amazing through all of this and become so great in emergency situations. They are all CPR trained and can handle emergencies like champs. I am so very proud of each and everyone of them.
At this time and with Nelio in his current state he is not able to help with pretty much anything. Not laundry, taking out trash, paying bills. He does not remember passwords or how to navigate internet and has a very low attention span which his speech therapist at the hospital has been working with him on. Many of you also know that Nelio is my partner in business and trying to run the business from a hospital room this past month with bad internet has been awful and I had to turn down meeting with several clients.
They have told us his biggest mental challenges right now is sequencing, concentration and processing. He also does not have the strength to get out of bed and sleeps pretty much all day which is to be expected after what he went through and all the weight he has lost. I woke him up to go to his doctor appointments this morning and it was hard getting him out the door as he was so weak and he slept all the way to the doctors and all the way home. I know it was hard to get sleep at the hospital and his body is probably just catching up so we are letting him sleep as much as he needs for right now with the exception of appointments and making him do a few sets of exercises a day to keep his body healthy. I know and believe this will get better as time goes by.
Many have asked if I had started a gofund me account and to be honest, like I said above , asking for money has always been hard for me. Some of you did not take "No" for an answer and bought us groceries, sent gift cards, paid for nights at our hotel and sent money which helped pay for additional nights that we needed as his hospital stay kept being prolonged. This gave our kids (oldest 19) a place to stay close by especially when Nelio was in ICU so they could see their Dad daily. We even had a dear friend buy us a fridge when our fridge went out and feel so blessed to have had so many loving friends and family members that have wrapped around us even though I have not been the best communicator when it comes to thanking each person or letting those that want to help know how they can help. So many things have to be done by me and it would actually take longer training someone then it would to do it myself however I am going to work on a few things to put at the bottom of this letter that will help us if anyone wants to help.
I have always had a hard time and never been comfortable with being on the receiving side versus the giving side but want to thank all those that were persistent and did not take no for an answer or get offended by my silence. We have appreciated your prayers more then anything else.
Being in the wedding business I know posting something like this might cause my couples to panic as it did during Nelio's first surgery when we shared publicly and had several vendors that took us off their referral lists and were afraid to refer us and also had brides that canceled their contracts with us in fear that we might not show up to their weddings even though, to this very day, I have never missed a single wedding.
As a wedding photographer I do not have the luxury of calling in or taking a sick day. I have never cancelled, called in or not showed up to a wedding in the 25 years I have been shooting weddings. I have been to every single wedding that I have ever contracted, including the weddings that were scheduled during Nelio's surgeries, hospital stays and medical emergency seizures that landed him back in the hospital. Most importantly I did this with a smile on my face and never forgot that I was photographing the best day of someones life it was all about being able to turn myself off. In addition to never calling in I have also had to cover many of Nelios shifts over the last almost three years. For the last 10 years he has been my assistant and second photographer as well as partner and many times I would only have a days notice to cover his shifts ( Thank you to my photographer friends whom ,even though you had full time business of your own, always jumped in to help and any given moment) and that is why we ultimately decided to grow our team.
In the midst of everything that was going on in the last few years we somehow we managed to win many awards including the wedding wires couple choice award, get inducted into the knot hall of fame, get published multiple times and build a permanent team as we slowly started to phase Nelio out of his normal responsibilities and slowly transitioned him into a full time office position. Our oldest daughter even joined the team permanently last year and has been shooting with us for a total of four years now. Despite all the people that panicked and turned their backs on us during that difficult time God still provided and we got through it and we are so grateful to all of our couples and vendors that supported us through all of it. We appreciate you all so much.
I have hesitated sharing a GoFundme or sharing publicly in fear of taking another hit like the last time but the more I try to do it alone the more I feel God telling me to let go and let him so I am going to stand on these verses right now that I shared below as I know it must be God himself moving through the body of Christ as so many of you have been his hand in all of this and we have felt his presence through you (I am tearing up writing this) more then ever before. Your love and compassion has allowed us to see his face and feel his presence and I can not help but be overwhelmed with emotion as I see an army rising up around us offering to take every single burden from us. I just do not know what to say because nothing seems like enough. I am going to stop being stubborn and saying that we got it covered and we don't need anything and that all we need is meals. Please know it was not because I was ever ungrateful I just felt so bad and helpless asking for help again especially since we have went through all of this before several times now with this being his 4th surgery. I know that is not an excuse and God is humbling me in so many ways. These verses say it all.
"That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." -2 Corinthians 12:10
"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.-2 Corinthians" 12:9
Mathew 6:25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?
So I hope this explains a little more our situation and I am going to be vulnerable here and share a gofundme link. I do not want anyone to feel obligated to give and I truly despise asking but I know this will be a long journey and I know many of you will not take "NO' for an answer anyways (you know who you are... ;) xoxoxox) and so I know God is wanting me to surrender to this and allow him to take over and the truth is we do need help and I would have never been able to do it alone even this far so thank you to everyone whom has brought meals, paid for hotels, paid for a new fridge, mowed our lawn, lended me an ear and gave me a shoulder to cry on (without judging or trying to find kinks in my armor when I may have not seemed like I had it all together) and so, so much more and most importantly all the intercessors whom have not stopped praying for complete healing for Nelio. I know our Superman will be back on his feet soon and I can not wait for the Part 2 in our "happily ever after ending" story and long journey! Thank you all for everything you have done so far. We appreciate you so much! God is good and he is good all the time. So here it is ..........
Our current list of needs:
-A Mechanic that will look at my daughters car as she is helping us with transporting her siblings and it keeps breaking down
-A wheel Chair ( Update: We have a wheel chair. Thank you Canoe Creek Church for providing)
-Help with regular and medical bills he has share of cost and most of his Dr's do not take it especially the follow up Dr's
- A teen that tutors that could help me get the kids caught up with their homeschool work in both Math and English. Grades 5th,7th,8th,9th,
-A handyman that could help us safety proof a few things as Nelio is taking a medication that could turn a normal finger prick into a major ordeal.
-More people to sign up for meal train to bring a meal (the sign up link for that is below as well at the bottom of this page)
-Prayers ...lots of prayers xoxoxo
-Someone who could help run errands from time to time.
-If anyone would like to send a get well card or a card of encouragement to Nelio I know he would love that you can send it to : 2570 Cypress Tree Trail St. Cloud, Fl (34772)
What we do not need:
-People to help with our kids (We are lucky to have such a large family and a God Mother that has been able to step in and help as well as my adopted kids previous foster mom whom has helped a lot as well) Fortunately for us also our kids are older now and can watch themselves they have also been such a great help with Nelio and supporter during this entire process especially since he needs 24hr supervision right now.
-A ton of questions and emails as I can barely keep my head above water and I need to prioritize right now and that means putting God, Nelio, Kids and work as my biggest priorities right now. I love you all and I promise to update regularly Thank you all so much.
Thank you again to everyone whom has helped and those whom have been asking how they could help It truly means so much to us and gives us comfort as we navigate this next stage. Continued prayers appreciated for a full recovery with all physical ailments and mental abilities. Specifically for blood clots to miraculously disappear and seizures to be completely gone and mental capacity to be fully restored in Jesus name AMEN!
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- Deni Burnetti
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Fundraising team: Miotto's Support Group (3)
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