I’ve long lost track of how many times Corrigan has been hospitalized in his five years of life. Early on, I broke down all of the appointments and hospitalizations for his first year (roughly) and I am glad that I did because my memory sure isn’t what it used to be. You can read that post here.
My best guess is that last week’s hospitalization puts us around 15 or 16, most of those were in-patient at Johns Hopkins, which meant transport by either ambulance or helicopter. In his last few years, because our local hospital has shown themselves to be diligent and capable, if his ammonia is not too high, Hopkins offers to handle his case “remotely”- in other words, he is hospitalized locally but no one makes a move without consulting Baltimore first.
When the word came that they were flying Corrigan out this time, my brain was not prepared for that possibility and after scrambling around the room, gathering our bags and family quickly arriving, it hit me…
This was the first time Corrigan was going to arrive in Baltimore and be developmentally at a stage where he would be fearful, confused and aware that he was alone until I could arrive. I’ve spent hundreds of hours in the pediatric emergency room at Johns Hopkins and have seen some terrible things. I have also seen so many children brought in alone, scared and often- despite the best efforts of the ER staff- not supervised at all.
When Corrigan was wee little, it was easy to keep him contained in his bed and though I often walked into the building and heard his screams before I even went back down the ER halls, he was either too sick to care about escape, or he was doing well enough on rescue meds that when he got there, the staff would put him in a playpen in the middle of their work area and they would watch him that way.
Corrigan has only recently really been making those deep, emotional connections with the people that frequent his life and he understands that those people are there for him when he is hurt, scared and or in need. He relies on the comfort of those he trusts and is fearful of strangers, where as in the past- as long as you were nice to him, he was happy. Now, it matters who you are.
I felt myself starting to panic. It would be three hours before I could get to him by car and it was getting late. I jumped up and ran into the bathroom with my cell phone in hand and did what anyone would do when freaked out…
I called my Daddy.
And he didn’t hesitate, not for a second. He and Mindy (my amazing step-mom) live a few dozen miles North of Baltimore and they raced down to the hospital, arriving at the exact moment that the helicopter was landing on the roof. Corrigan wasn’t alone for a single minute.
In the ensuing days, even though we were hours from home, my Dad made sure that I was fed at least one good meal and got at least one strong hug. Mindy packed me a bag of “lady stuff” as she called it, and handed it to me when I arrived in the ER in the early Monday morning hours. When things slowed down enough that I could grab a shower, I found that she had thought of everything. I felt rejuvenated by q-tips, dental floss and yummy smelling body lotion. It is funny how important those little things are when things are hairy.
I have several hospital bags packed at all times. When we went to our local ER I had my bag that is for ER visits and knew we would likely be admitted, locally I hoped, so I had my local hospital overnight bag. This bag is not as big as my Hopkins bag, because we live only around 9 miles from the hospital. When we are in-house locally, Mark and Connor bring me anything I need after 5pm. Or friends and family run by the house to get it in the day. Because we were not prepared for transport, and because they didn’t tell us until the bird was well on its way, my Hopkins suitcase (and it is HUGE) was still in my closet at home. Packed to the brim with medicines, clothing, toiletries, lots of microwavable soups and granola bars. The Hopkins bag is a thing of beauty, but because I was so desperate to get to Baltimore quickly, and caught off guard, I didn’t have what I needed for a long, out-of-town stay.
On Corrigan’s worst day, when he had his blood transfusion and was so swollen, when the doctors were talking about things like abscesses on his heart, when Corrigan was moaning in pain, unable to lift his own head, that was the day that I had no visitors. I’ve done the majority of Corrigan’s hospitalizations “by myself” but rarely am I truly handling it alone, because my Dad makes sure to be there as much as he possibly can, but he had to work (and so did Mindy) and it was a rough day, but I made it through without a single tear.
It was 8:30pm that evening, and I was sitting on a chair at Corrigan’s bedside. He was trying to get comfortable enough to sleep, and I was holding his hand, my head bowed in exhaustion. When the door opened, I assumed it was just another doctor from one of the three teams monitoring Cor, and when I slowly looked up to see my Dad walk into Corrigan’s room, it was like Christmas morning to me.
I had never felt such intense, immediate relief. I also think that I got some snot on my Dad’s shoulder. It was an ugly cry .I am nearly 40 years old and I am not ashamed to say that I still need my Daddy. And an hour later, after she just worked her own long day, Mindy walked in the room too-both staying until 11pm.
(Corrigan with Dad and Mindy)
Thank you Dad.
Thank you for giving up a week of your life for us like that. For sitting with me for hours and hours, day after day. For helping to hold the vomit bucket for little C, and wiping off his little face afterward. Thank you for making sure that I lived on more than graham crackers from the family lounge. Thank you for being the familiar face for Corrigan in the ER, in the middle of the night. Thank you for making sure that I had someone in the room that I could vent to. I love you so much. I can never say thank you enough.
And Mindy, thank you. Thank you for the “lady bag” and the magazines and the clothes. Thank you for running in so late in the evening to be there on one of the hardest days so far in this journey, after having a pretty rough work week yourself. I love you.
Sadie Nay, thank YOU, sweet niece. Thank you for coming in and keeping me company and bringing Corrigan that balloon that he literally slept with, grasped in his fat little hand. Thank you for the summery nail polish to add a little “pretty” into a pretty ugly time. Thank you for making that trip into Baltimore, when you’ve never even driven in Baltimore before (or anyplace quite like it, I imagine!) and getting us a delicious lunch. I love you, Nay Nay.
Thank you Mom and Mary Anne, for being with us all day Monday-bringing caffeine and food, and being such good company. You really helped the hours fly by. It sure got weird there at the end, rather fast, didn’t it? I know I can count on you both when things get wacky locally!
I always tell families in the hospital with a sick child to make sure they take care of themselves too, but I am a hard head myself about it. After Corrigan’s c-section birth, I refused to rest-spending every second by his bassinet in the Hopkins intensive care, until they literally kicked me out every night at 11pm. I didn’t eat well then, I didn’t take shifts with Mark like he begged me, and because Hopkins is the size of a small city, and in the old Children’s unit the parents were not allowed overnight, I logged a lot of miles on my body when I should have been resting. I paid the price for that with a terrible MRSA infection in my surgical site and it took me weeks to fully recover. To this day, I have side effects in that area due to my stubborn side.
I’d have done the same thing this time, I really would have lived on graham crackers and lemon water. I refused the help of Child Life Services to have someone sit with Corrigan so I could go and take a walk. Or go to pray in the Spiritual Center. That doesn’t make me brave, or mean I am a better mom, it means that right now I am still fighting bronchitis and a sinus infection, because I didn’t take care of myself. But because of Dad, Mindy and Sadie, I am not far sicker and emotionally, I feel pretty good. They were islands in a storm, and I am so thankful.
My heart is always overflowing with gratefulness when Corrigan recovers. I’ve already sent thank you notes to both floors, at both hospitals. These events are always difficult, but it is the kindness of others, whether a box of q-tips or a call telling me that Corrigan is on a new church prayer chain, that helps sustain us. Everyone always says that they do not know how we do it- we do it because of people like you who cover all of the bases when we are too sidetracked to do it ourselves. I could cry just thinking about the many kindnesses and I am about four seconds away from singing “You are the wind beneath my wings…” so I had better wrap up this post.
You really are though.
ONE LAST THING! Do you have any more prayers left? You do? Endless supply, you say? Could you spare some for Corrigan’s UCD sister? Alexa is the same age as Corrigan and has lived with Citrullinemia for five years. Yesterday, her amazing Daddy shared with her a piece of his very healthy liver so that she could have a second chance at a life without a Urea Cycle Disorder! Things went well, but the next few days are going to be the true test, and the family would love if you came over to their site and learned more about Alexa. If you could keep this precious family in your prayers, they would be so thankful!
This is Alexa and she is AWESOME…
and her story, and all updates, are HERE.