Why does 2017 feel like just a couple years ago but also like a lifetime ago?
Facebook must have updated because I now see a link to this blog on my FB profile, which wasn't there before, and this is why I'm here right now. :)
I don't normally hang out on my own FB profile, but I was responding to happy birthday wishes this morning.
Happy 46th birthday to me!
Wow, life has changed a lot since my last post. Our youngest just turned 20. 20!? Are you serious right now?
Our older children are doing well and making their way in this crazy world.
The youngest almost lost his life last May. Almost a month in the ICU, two of those weeks were on life support. He spent a total of over three months in the hospital. It's been 9 months of stress. The ICU doctors estimated he had a 60-70% mortality rate. Uncontrolled Familial hypertriglyceridemia and diabetes caused severe pancreatic injury, severe necrotizing pancreatitis with multiple organ failure.
ICU docs had a really difficult time stabilizing him. They had to narcan him three times in one night because they couldn't get his sedation level right. The BP cuff was giving crazy readings so we had to step out of the room so they could place an arterial line. They told us his heart was in danger of stopping bc his BP was so low at that time. He had to be put on a ventilator because his body was in shock, obviously, and he was septic. He was basically hyperventilating. His heart rate was through the roof initially and he was hypoxic, which is why they intubated him.
The pancreas basically set off a bomb inside of him. He had multiple organ failure. His triglycerides were around 4,700. He had multiple rounds of dialysis and plasmapheresis to clean his plasma. The pancreas was necrotic and eating itself. He had multiple surgieries to cut away dead tissue. He had high fevers, a bad infection in his abdomen. They were pushing diuretics to move the fluid out for weeks while they waited for this body to "wall off" the fluid so they could go in and drain it safely. They drained a total of around 7 liters of fluid. There was so much fluid that both of his lower lobes of the lungs were collapsed and he had a two liter pocket of fluid pushing on his left lung.
The fluid and inflammation cause strictures in his duodenum, which meant nothing could move past his stomach. He had a huge pocket of infected fluid around the head of his pancreas. They placed stents from his stomach to that pocket of fluid and it drained into his stomach.
He lost around 125 lbs. He was literally starving. They had to place a stent so he could eat but he still had trouble keeping things down for a long time.
He looked a character from the Simpsons at one point bc his common bile duct (liver) had a stricture and his bilirubin was so high. He was too ill at that time to place an internal stent so he had to have an external drain. That was terrible for him. That drain and the bag was pretty nasty. They were eventually able to place an external stent after a few months. The final stent was removed about a month ago.
He has been cleared by his GI doctor and doesn't have to go back unless something else kicks off. Now that things has settled down a bit, he is dealing with the mental/emotional trauma of what he has been through. He is tough young man, physically and mentally, but that was A LOT to go through. He was in intense pain for months. They would not increase his pain medication. I understand they don't want to create and "addict", but you can't say "severe necrotizing pancreatitis is one of the most painful conditions a person can have" and then not try to manage their pain effectively.
He still has digestive issues but that is to be expected. He has scarring, deformities from the stents and a lot of damage in his guts, but he is relatively lucky. He has a neuropsychology appointment at the end of this month. Concerned that he may have suffered some brain damage from his near death experience.
I think now that he had his last surgery, I've come out of survival mode and it is really hitting me. I almost lost a child. That is the hardest thing anyone can face. Most of the time, it doesn't feel real. It feels like a movie or something. I don't know how to explain it. I guess that's survival mode, keeping it at arms length so it doesn't crush you. I drove two hours almost every day to see him for over three months. Keeping it together, running a business, taking care of everything here at home. I am really proud of myself. I thank God for giving me the strength I needed. When I look in the mirror, I can see effects of the stress. I have aged SO MUCH in these last 9 months.
I'm praying that 2026 is going to be a good year for our family.
