After last Friday’s ER visit we took Corrigan home and hoped for the best. Unfortunately, he deteriorated over the weekend and was back in the ER on Sunday. Our local hospital tried to keep him there and admitted him, but by Monday afternoon his condition became such that he needed the team at Johns Hopkins immediately. Forty-six minutes later the Life Flight helicopter arrived and flew off with my youngest.
It has been a few days now and today is the first day I feel like I can let some of the breath I have been holding escape, though he is still very sick and likely going to still be here awhile.
Without going into too much detail (feel free to contact me for the deets if you want them. Related: please slap me for using the word “deets”) they feel that he managed to catch a virus that depleted his red blood cells, causing him to become severely anemic very rapidly and is literally receiving a blood transfusion as I type. It is also suspected that he has an infection in his port line, or elsewhere in his body, that has caused frequent high fevers. If you follow along here, you know how dangerous fevers and infections can be for my boy.
He has been on incredibly high powered IV antibiotics, three kinds to be exact, and yet the fevers will not leave him alone and he has experienced febrile seizures as a result. His ammonia became elevated as well. Rescue meds for his Urea Cycle Disorder quickly brought his ammonia down and has allowed us to take hyperammonemia off of the table full of problems, as the doctors and lab folk are working double time to figure out what might be plaguing Corrigan.
When I say that this might be his most expensive hospital visit ever, that is in no way hyperbole. They have grown so many cultures, studied blood, urine and stool and bombarded us with questions about tick exposure, bone infections, that lake we swam in last weekend, and on and on and on. To hear that we may never know what this was all about (the cultures that tested for staph in his port line were also negative) is beyond frustrating, but what matters is that my little guy is in good hands, receiving top-notch treatment and slowly but surely improving.
I will say this…I am incredibly thankful for modern antibiotics. I am also beyond thankful for doctors like Dr. Saul Brusilow for medicines that give our affected loved ones a greater chance at a longer life, and researchers and hospitals that participated in clinical trials that brought Ravicti to the shelves this year. Also to the National Urea Cycle Disorders Foundation who have worked tirelessly on behalf of our UCD families, to fund support for the researchers out there that are out there working to find a cure. Twenty plus years ago, this situation with Corrigan may have ended tragically, but because of the folks I just mentioned, and full credit to God as well, my boy is getting better.
I can’t think of a better time to ask you for your support. Your thoughts and prayers and year-round dedication to loving and caring for Corrigan and our family are absolutely priceless but if you might be able to do more than that, I have just the thing!
The NUCDF needs financial support so that they can keep on fighting for kids like Corrigan. And if you decide to help today, you will be giving babies born years from now even MORE of a fighting chance, as the NUCDF works to improve options and fund research into how this disorder affects the brain. I humbly ask that you consider my request to help in this year’s Cure the Cycle Challenge in Corrigan’s name. No amount is too small, every dollar helps with such a rare disorder.
Please click HERE to go to our “Corrigan’s Heroes-Cure the Cycle” page!
As always, if you are only able to donate a prayer in Corrigan’s name, you have my deepest appreciation as well. I have been emailed many times this week about church groups that have started prayer chains for Corrigan and never ever underestimate the value of such a gesture to our family. We treasure you and thank you so much!
My little man has suffered so much in the last six days. Aside from the terrible symptoms of his current health situation, he has been poked, prodded and observed while in such a state of weakness that I know he wishes he would be left alone. He is exhausted, agitated and confused as to why this is all happening and I’ve been able to do little to bring him comfort. I am seeing signs of improvement today though, and am incredibly hopeful that this is the day that he turns the corner and begins the road back to good health.