I was sitting here thinking about how many trips we’ve taken to Cincinnati Children’s Hospital. The first trip was via learjet transfer from Loyola when Cole was 4lbs and six weeks old. That was a trip I could never forget. My emotions were all over the place while I sat on that learjet, very small plane that only seated the pilot, co-pilot, nurse, respiratory therapist, Cole, and myself. I was leaving Loyola which I knew wasn’t the best hospital for my son and his unique airway, based on the recommendation of the head ENT, Dr. Hotaling. If I could wrap my arms around him right now, give him the biggest hug, and thank him… I would. We sat in a conference room where he looked at my husband and I and said, if Cole was my son or my grandson I would take him to Dr. Rutter in Cincinnati he is simply the best of the best when it comes to complicated airways. It takes a true hero to admit that something is out of your wheel house when you are the head of the department and recommend someone else you truly believe would be better suited to handle.
We were leaving the one and only nurse that truly had an incredible amount of passion, love, and knowledge of our little guy. I’ll never forget Joan as long as I live. There were days Mark and I would show up at the Neonatal Intesive Care Unit (NICU) and she would not even have to say, “how are you?” She just knew we needed hugs and she would come right in with the biggest hug and her sweet personality and her unbelievable love for our son was felt every second of everyday she was with him. I could never forget the day I was holding my precious, fragile boy, with cords all over his tiny body and Joan simply looked at me and said he’s not acting right, took his temp, and said he needs antibiotics. We put him back in his incubator and I took that time to go pump in a private room. Upon returning to Cole’s area in the NICU, his entire room was full of all different kinds of Doctors. Sure enough, Joan was spot on Cole wasn’t acting like himself because he had Septis. Septis occurs when the body’s response to an already existing infection gets out of hand leading to a life threatening condition. What started to happen to Cole, specifically, was inflammation began to take over his entire 4lb body causing tissue damage and organ failure. Mark and I stayed by his incubator in complete fear and anxiety until we had to go home because the time had come were visitors needed to leave. We were in bed when Mark’s phone rang at 3am. The Doctor on call, who’s shift ended at 10PM had not left Cole’s bedside was calling us because she was pretty confident that Cole’s body couldn’t handle fighting anymore and that he wouldn’t make it through the night. It’s incredible the amount of tears we shed, the hopelessness feelings we felt, and the difficulty it was getting ready to leave in the middle of the night to go see our baby that most likely was not going to live.
I’ve told everyone this and it still holds true to this day. Cole is on Cole’s timeline, no one else’s. Cole decided he was not ready to leave us yet and just wanted to show us that his little body was so much stronger than it looked. The Sepsis caused the Doctors to put Cole on peritoneal dialysis. Cole had a soft, flexible tube (a catheter) placed in his belly, specifically peritoneal cavity). During peritoneal dialysis a cleansing fluid is circulated through the catheter. The fluid absorbs waste products from blood vessels in the abdominal lining (peritoneum) and then drawn back out of the body and discarded. We were told by the nephrologist that once a baby is put on dialysis, they stay on dialysis until they get a kidney transplant. Typically, a child must weigh at least 20lbs to get a kidney transplant. This Sepsis also pushed our timeline of leaving to Cincinnati a couple weeks because we wanted to ensure that Cole was completely healed from the shock to his system before travelling. We were ok with this and mostly because we knew we had Joan, she made us feel like Cole was the only baby she cared for although,truthfully, she cared for hundreds. I remember squeezing Joan tight (bawling my eyes out) when Cole was getting transferred to the airflight team and she continued to tell me everything was going to be alright, Cole was going to the best place for him, and he was so lucky to have Mark and I… The best parents! It’s incredible how impactful one human being can be on another, but she was exactly what our family needed and it makes perfect sense to me why she did this for 40 plus years of her life… She was meant to care for babies and their families in difficult times.
I remember landing and the transfer from learjet to the ambulance, the guy asked if I had ever been to Cincinnati. As soon as I told him no, he told me I had to try Skyline Chili and that it was the best food anyone has ever had. I remember thinking WOW, it must be incredible if the entire state eats it and is known for it. Well, totally my opinion, but you couldn’t pay me to eat Skyline Chili again. I’ll stick with my Taco Bell, it hasn’t killed me yet and I don’t have to plug my nose when I eat it. So July 2015 was the first trip to Cincy. I tried to do some rough math and figure out how many drives we’ve had to and from Cincy and (directionally correct) I would say over the past 6 years approximately 150 times. That’s 100,200miles and 1500 hours of drive time. Which equates to 63 days of driving. Therefore, when people here me say we’re going to our home away from home… I really mean it.
So the night before Cole’s post OP appointment, he and Lexi were talking/signing about school. I informed Cole it was bedtime because he had a long drive with Mommy and Daddy tomorrow. It’s amazing how smart this little guy is. He immediately started tearing up and I felt like the worst Mom. I was trying not to tell him about the Doctor because the last time I did, it impacted him so negatively days up until his appointment and I didn’t want to do this to him again. However, Cole is smart and if he’s going on a long car trip with Mommy and Daddy and Lexi is not going… It’s not vacation! He immediately started signing that he is all done with the Doctor, he didn’t want to go, and he wanted to go to school. That’s one way to get your child excited about school. Anyway, he ended up being a trooper like always. I promised him no one was going to touch him, it was simply for pictures and the Doctor to look at his back. It’s almost like Cole needed to remind me half the car ride that he was only going for the Doctor to look at his back and pictures and then coming right back home to Lexi, Grandma, and Grandpa. I had to keep confirming, yes that’s exactly right. It will not hurt, no one will touch you, and it will be quick. Well our appointment was scheduled at 12:30EST and they got us in at 12:32. We took xrays, Cole was super awesome at that, almost like he’s done it before… Oh wait, he has hundreds of times! The Doctor looked at his back and we discussed the improvement. Now remember, Cole had an 89 degree curve of his spine and it was imperative to have rods put in and intervene to ensure his organs didn’t begin getting crushed by his spine. The Xrays show that curve has been reduced to 45 degrees post OP. Holy cow!!! Now don’t get me wrong, I wish it went from 89 degree to 0 and now his spine was perfectly straight, but I’m also a realistic person and that was never a possibility. We were out of there at 1:42EST and on our way home. Ten hour drive for 1 hour appointment. What a difference, what a blessing, and what a miracle this little boy truly is and continues to be. The best is yet to come with Cole and I don’t know what that looks like, what it will be, or when it will happen. But this boy never ceases to amaze me and I just know he’s not done showing the world the obstacles he will overcome!