So once I got the difficult task of winning over Holly's dad and the rest of her family, things just sort of fell into place. I graduated from college and lined up several job interviews, including the one down here at East China. I had no intention of actually working down here since it was so far away from where I grew up, but they offered me a job about three hours after my interview and I took the position. I swore I'd never teach middle school after a negative middle school subbing experience, but considering it was May and I was getting a job offer...I said yes. When I received my diploma in the spring of 2000, I was already employed, and that was a GREAT feeling.
We decided to move into an apartment building in Chesterfield, which is where we lived for our first year together. Throughout that first year, we began to talk about getting married and buying a house. We hated the apartment complex we were in, and it seemed to be getting worse. It didn't help that about a month after we moved in, a young man was murdered in a Mancino's joint about two miles down the road. It was HUGE news in the area and it made me start to wonder what I had gotten myself into. As far as the marriage, we both just kinda agreed that it was what we wanted to do. We went ring shopping together and Holly found a ring that she fell in love with, so I bought it and we waited for it to be set and fitted to her finger. We returned to the store when the ring came in, but when we got back into the car I realized something that was missing....a proposal. So, being the romantic that I am...as we were sitting in the car in the parking lot of the jewelry store...I opened up the ring package and held it out to her and said, "Soooo, you wanna get married or what?" And guess what? She said yes:)
We got married sometime in April of 2001, complete with a party bus and the K of C hall. We were living on a first year teachers salary, so we really didn't have the money for a honeymoon. We made up for it by jumping into our Buick and taking a few days to be alone up in the U.P. Yeah, most people go to the Bahamas or Jamaica...not us, we went to the Upper Peninsula of Michigan in April. While it wasn't exactly paradise, it was nice to get away for a few days alone. Little did we know that it would be the last time we would ever have the opportunity to get away by ourselves due to what was coming in the years to follow.
About nine months after our wedding, Holly was due to have a little bundle of joy. (9 months...weird. Hey, the U.P. isn't paradise but they DO have motels up there!) We decided that we didn't want to know what we were having, and I wouldn't have it any other way. The pregancy was fairly normal and uneventful, and then in February the day arrived. February 17th was going to be the day that I'd see this thing that everyone refers to as "the miracle of life." Well, you can call me a party pooper or whatever else you'd like, but the miracle of life is just damn gross. Don't get me wrong, watching that little head pop out is about the biggest thrill that I've ever had, but the entire process was incredibly disturbing. You always hear stories about how things go so smoothly and the mom and dad are nothing but smiles through the whole thing...well that's a bunch of crap. I was a nervous wreck and I think Holly actually had FIVE epidurals put in. I wish I were exaggerating, but I'm not. Everything that could have went wrong did go wrong. The first one was ineffective. A couple of them missed. One got pulled out. It was a mess. Then as Holly starts into the toughest part, she starts puking all over the place. I've never been in a war, but I'm pretty sure the sights, smells, sounds, and amount of blood in that room would be comparable to at least a small battle.
In the end, I was a dad again and a beautiful baby girl came out. Holly came up with the name "Kennedy" and I loved it from the start. Those of you that are from the 80's and 90's like me might remember the MTV V.J. named Kennedy, and that was the only female I had ever heard of with that name up until that point. Of course, my dad's reaction was something along the lines of, "Good name...good democratic president." We took her home and the adventure of raising a baby began. Little did we know at the time that things would get VERY difficult in the weeks to come.
Early on in her life, Kennedy was jaundiced, so she spend a few extra days in the hospital under those cool looking lights to get rid of the jaundice. Then once we got home, it seemed to me that rather than being the yellowish color that jaundice causes, she was EXTREMELY pale. I didn't think anything of it considering Holly is white enough to be in one of those Twilight movies, and I'm not exactly the definition of dark skinned sexiness. Holly breast fed Kennedy right from the start and she really had no problem with feeding. The problem was, nothing seemed to ever stay down. Eat. Puke. Repeat. Eat. Puke. Repeat. I really didn't know any better since it was my first experience with a baby. I just thought she was "spitting up" once in a while and that there was no reason for concern. Upon reflection, it is actually quite comical how many times Holly or I had to essentially leap across the table to catch a handful of barf. No joke, it was several times a day and after the first few days, you just get used to it. It got to the point that we could tell it was coming, so I'd just jump up and cup my hand under her chin and catch it. Yeah, I know it's gross, but once you've lived it, it's not all that big of a deal.
We started thinking that something might be wrong, but she seemed to be content enough. We took her for a regular checkup to Dr. Dev (one of the best doctors we've ever had the pleasure of working with) in Port Huron, and he seemed to be mildly concerned about her lack of weight gain and paleness. He sent us to the Port Huron hospital to get some blood work done, and in hindsight he actually may have saved her life by doing so. I still remember the doctors at Port Huron telling Holly and I that there was something very wrong in her blood and that they needed to send her to the hospital in "the city" immediately. Holly and I both thought that they meant the other Port Huron Hospital that was in downtown Port Huron, but we soon realized that they were sending us to Children's Hospital in Detroit. Holly went with Kennedy in the ambulance and I drove separately....and the whirlwind was beginning.
At the hospital, they seemed to be running an ENDLESS amount of tests. One of the hardest moments of my life came one day when they needed to draw blood and I volunteered to go with her since Holly was getting exhausted from doing most of the work. When they got her in the room to draw blood, they couldn't find a good vein to draw from since they had drawn blood about a dozen times in the previous few days. She was literally stuck with holes all over the place, so the next option was to find a vein in her skull. I had to help hold her down along with a pair of other nurses. I held her legs while each nurse held and arm, and they stuck needles in her head while I put my head down and cried like a baby. She screamed like I've never heard her scream, but there was nothing I could do to help her other than just talk to her and let her know that daddy was there.
Days went by and still no diagnosis. Then one day the doc came in and sat us down. The first question he asked was, "Do you have a history of Cystic Fibrosis in your family?" We had heard this question a few times, and we answered no just like every other time. The doc explained to us that they had eliminated a lot of other possiblities and that they were going to treat it as CF until they could get definitive DNA blood work done to verify that it was indeed CF. My only thought was, "What the hell is Cystic Fibrosis?" Holly called her mom and asked her to look up some information on CF on the internet so that we had some idea as to what we were dealing with. I answered the phone when she called back to talk to Holly and I still remember the conversation.
Me: "Well, did you find any info on CF?"
Janet: "Yeah."
Me: "Is it bad?"
Janet: "Well, it's not good."
Our world seemed to be flipping upside down. I was a wreck, but Holly NEVER flinched. I was busy feeling sorry for myself and she was busy asking questions. I remember the doctors specifically telling us something to the effect of, "This is going to seem overwhelming. Very overwhelming actually. But keep in mind, CF is not a death sentence." They started to talk to us about some of the basics of what we would have to deal with, and I remember one time asking them one time about how long we would have to give her this medicine and do all these treatments. The nurse just kind of looked at me funny and before she had a chance to answer, Holly just said, "forever". I had no idea what was going on. How could this happen to us? Why is it happening? But soon afterward, we both realized that there was no sense in asking why...but rather we should be asking, "What now?"
Just like they told us at the hospital, it took time to find our way. I can honestly say that for that first year, if it weren't for Holly our family would have fallen apart at the seams. I was still in a state of denial, but she was in a state of determination. She spent more time researching CF on the internet in those first two years than I've ever spent. She joined support groups, chat groups on the internet, e-mail groups, and anything else that would help her understand what she needed to do to help Kennedy. Where did I get all MY information? From Holly...that's all. There is WAY too much about CF to even begin to discuss, but essentially it causes a thick mucus to be secreted in many of the body's organs, which leads to infections and a whole bunch of other problems. The disease affects all organs, but the lungs are the ones that seem to take the biggest hit.
So what does a day or a week in the life of having a child with CF encompass? I'll touch on some of the basics below, but this really only scratches the surface.
Breathing Treatments
Kennedy does numerous inhaled treatments every day, twice a day. In the morning, the treatment lasts between an hour and an hour and a half. She does inhaled Saline, Pulmicort, Xopenex, and Pulmozyme. In the evening, she does about 45 minutes to an hour of breating treatment, including inhaled Saline, Pulmicort, and Xopenex. These treatments serve many different purposes, from opening up the airways to loosening the mucus to moisturizing the airways.
Chest Physical Therapy
When she was younger, we had to do chest therapy by hand. This included pounding on her chest with a cupped hand in many different locations on her chest and back. Now the CPT is done using a $16,000 machine called "The Vest" (thank god for good insurance). This therapy is designed to loosen the mucus in her lungs so that she can cough it out.
Pills, Pills, and more Pills
Currently, Kennedy takes approximately 25 to 30 pills on a daily basis. The most important ones are the enzymes that she has to take every single time she eats, which allows her body to break down the food and digest it. She also takes many supplements, some prescribed and others over the counter.
Nasal Rinsing Galore
Kennedy needs to use the NeilMed sinus rinse between 2 and 4 times daily. This essentially involves spraying water into one nostril and out the other, cleaning out everything in it's path.
Shakes
One of the benefits of having CF is that you are encouraged to have high calorie, high fat meals. Each morning and before bedtime, Holly and I make Kennedy a specially made "ScandiShake"...a 600 calorie treat:)
Those are some of the main things that she does on a daily basis, but there are a lot of things that she deals with that I didn't mention. She must constantly stay hydrated and often has a very difficult time staying cool in the summer. She deals with frequent stomach aches and headaches, and has been on antibiotics more times than any typical person is on them in their entire lives. I think we lost count of how many times she's been on antibiotics when we got up to 60 or 70 times (once again, not an exaggeration).
She has been hospitalized an average of once a year and has had multiple surgeries to clean out her lungs, remove polyps, and remove her adnoids. She is currently on IV antibiotics that we give to her through a picc line three times a day at precicely 7 AM, 3 PM, and 11 PM. The IV's take about 45 minutes to an hour, so in addition to the time spent with treatment and CPT, she spends about 5 to 6 hours a day doing CF related things.
At the end of the day, she is one of the strongest kids I've ever met. I called her the day after her latest surgery and I could tell she was feeling like total crap. I asked her how she was doing and she just said, "good". Is it fair that she has to deal with all this crap? No. Can we change it? Also no. So we choose to deal with it and move on. CF is a common topic of conversation in our house...we don't hide from it or treat it like it doesnt' exist. It is a part of our family and we deal with it. We deal with it using humor and probably a lot of inappropriate humor at that, but that is just the way we are.
A lady that I used to work with had a son with CF, and when I approached her and asked her how they dealt with the disease, she just looked at me and said, "We laugh. And we laugh alot. Every day...we laugh." Probably the best advice I've ever gotten...so what do we do? We laugh.
Until next time....
Felax, thanks for sharing your family stories! You all are a true inspiration.
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