An update and how you can help

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.

photo (55)
(the view from his hospital room)

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.

photo (56)

Thank you!

4 thoughts on “An update and how you can help

  1. Mindy, while Corrigan was at Hopkins I was literally less than an hour away at the NIH taking part in the NIH MINI Study: Metabolism, Infection and Immunity in Inborn Errors of Metabolism.

    Trying to do my part to figure out how to make life as a UCD patient easier as we continue the search for a cure!

    Like

  2. I have been following your blog for the past 4 years or so. When I read that Corrigan was sick, I started praying. I read about it while at a golf charity event for the Ronald McDonald House and I started telling the people I was with about this little boy who’s story I’ve been following. Its amazing how reading about someone’s life can make you feel like we are friends and as a friend, its important for you to know how much you and your family have impacted my life. You have prayers coming your way (all the way from North Dakota) every time you update your blog. 🙂

    Like

    • Melissa,
      You’ve read for four years? That is amazing, what brought you to this page so many years ago? Thank you for commenting and sharing your story. It never fails to amaze me the power of the internet. I understand that the advent of this World Wild Web thing can feel a bit like the Devil’s playground mostly, but when used to spread awareness and share experiences that allow for support and open such lines in each other’s names to God? I think that is often a neglected part of what this internet stuff can be good for. Your prayers are so important and I know it can sound silly to some, but there are days that are so hard, when I look back I have no idea how I held up- how Corrigan managed to get through it with his sweet spirit-and it can only be because so many many people have surrounded us with their thoughts and prayers, those words are literally what are holding us up, even when we don’t hear them. So thank you. Thank you, thank you friend!

      Mindy~

      Like

Your comments are appreciated!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s