Corrigan was listed for organ transplant last Friday, January 12, 2018.
I’ve decided to do a weekly post until he is transplanted.
Since last Friday’s call, nothing much has changed. Corrigan has been very healthy and doing well since his last hospitalization on Christmas weekend. He’s only had one day where I had concerns that perhaps something were “brewing” but he rallied and has been having very clear-headed days since.
(Photo taken in hallway. Light from bathroom window)
It’s hard to explain how these past few months have impacted our boy. First and foremost, the stress for Corrigan has been the most challenging. Several of his last events had ammonias over 300, so he’s had hallucinations and self-harm to conquer while in crisis, and because he got very little time between crisises to recover, he’s also had intellectual regression.
He came home full of anxiety, with panic attacks occurring frequently anytime he has to get in the car, speaking frequently of death and dying, and easily agitated. He went from doing some multiplication over summer school (he’s in grade 3) to Kindergarten work again. His demeanor has been stoic and blah, with very few smiles. It’s been very hard for him to shake off the Fall events but I believe he finally has these last few weeks.
We have decided to pull him from school for a few weeks as Influenza A and a stomach virus is running rampant in his school, and throughout the entire school system, and this (we believe) will also greatly reduced his stress levels, which we believe lead to slight elevations in ammonia throughout his school day. These elevations cause him to become weepy, lash out easily and make learning very difficult.
We will be working with the Board of Ed to have some tutoring at home, through Home and Health Services (my contact at the Board has been so helpful and accommodating!) and I’ve got my own school stuff planned for him too.
Aside from that, the week since we first learned he was listed, everything has been good. Friends have been reaching out on how they can help support our family during the surgery and after (planning a spaghetti dinner), even some businesses have made contact out of the blue, and we are so thankful for those who have already showed us great kindness. It’s only been a week and I have seven “thank you” cards to send out.
Corrigan’s transplant itself has been fully approved by his insurance (pre, surgery and post care. whew!) but we are bracing ourselves for the costs of missing work and living downstate for weeks after hospital discharge as he recovers (we are required to stay close by the center and cannot come home to Western Maryland for awhile after the procedure. They’ve told us to plan for 4-6 weeks)
It’s been stressful never being able to turn my phone off and when it does ring there’s a weird thing my guts instantly do that makes me want to flee to the bathroom rather than answer the phone but I imagine it’ll get easier. It’s stressful, this transplant stuff, but we have peace about it and know it’s what he needs.
I’ve been a maniac about laundry, worried that we don’t have enough clothes to pre-pack so when the call comes I can’t have a hamper full of dirty stuff we need, so I’m laser focused on seeing the bottom of the hamper at all times and also keeping my house as clean as possible so that if we need people to come by for things while we are gone, it won’t look like a bomb went off. This is difficult now that Corrigan is home full time now. Ha.
I’ve begun making lists and packing up things I may need to live in an apartment in DC. Things are pricey down there so I’m scouring for deals and getting ready now. If anyone has advice on what to pack that made the stay easier, let me know. Friends who have gone on this path before us have been really helpful in this regard. They really have thought of it all!
Thank you for checking in. I have made a public Facebook page for more frequent updates. If you’re interested, the page is titled “Corrigan’s Detour” and we welcome you to join.
I also update Instagram and Twitter frequently. Those links are probably around here somewhere.