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| In ER-dad making fun... |
My husband and I spent Monday, January 18 through Saturday, January 23 in St. Francis Children's Hospital with our spunky, 'afro-headed', big smiling youngest (17.6 yr old year old) son. Since the middle of November he has struggled with weight gain; although as a wrestler he was thrilled because he made his lowest high school weight of 120# with little effort, he was also exhausted all the time, had trouble eating and keeping food down when he did manage to eat. His wrestling coach mentioned that he was concerned-even his color was off. It all started when he had complications with poison ivy (or oak) being burned at a bon-fire(we knew he was highly sensitive to it-he had no idea it had been burned until he started to break out) so after three different doctors, strep throat, a virus diagnosis and continued sickness we finally decided it was time to go to another Dr. when he didn't get well. The Dr. at Urgent Care didn't agree that it was a virus or the latest coughing bug going around-it could be his appendix so he sent us directly to St. Francis Children's Hospital ER. After what seemed like forever we were shocked to learn that no, it wasn't his appendix but we weren't going home either. He was being admitted for testing.
As we faced teams of doctors we tried to explain why we were there I realized compared to the hours and hours of working out, measuring food and more working out last year to make and maintain 126# he had made 120# with no effort in the wrestling world. After the retelling and telling again of what we saw the months prior, numerous vials of blood with no idea of when we would get out I began to feel the first current of fear running down my spine. After the first day his growing team of doctors began tossed out words like leukemia, lymphoma, rare autoimmune disease, family history of childhood deaths I began to count the moments until the blood tests came back with doctors explanations. On the second day a resident told me not to Google anything-I never did.
Thankfully, the test for leukemia came back negative, chest x-ray for lymphoma came back negative, there is no history of early childhood deaths from anything. I have never been so happy my son flunked tests! They didn't have an answer as to why he was having so much trouble so they continued the hunt for answers while increasing his team of doctors to specialists and residents. New tests were ordered for more in depth testing and a quest for answers.
On day four a scope of his throat was done, the GI Specialist found 4 ulcers in his esophagus and cultures were taken, medication was given and we were being released to go home. After waiting all day as we were getting ready to walk out the door when one of our fantastic nurses came in with a doctor in tow.
We were given an extended stay by the culture taken of his throat-it came back a fungus. The funniest conversation of our entire stay happened then, in a CT Scan his appendix had some fluid around it and Easton kept saying it hurt, the resident finally said, "Boy, you need to stop worrying about that appendix and worry about the plant growing in your throat!" After two more days of IV antifungals we were released from the hospital.
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| Checking his heart-over mom, her pics & the hospital |
The day we were released we learned that a few staff members believed he was admitted and put on the oncology wing because he had all the 'tells" of cancer (all his symptoms pointed to it), numerous tests were repeated and the reason for additional testing to was rule out all kinds of rare things. As his main Resident said, "we aren't ruling anything in, just ruling things out."
I can't describe what it was like to walk around the pediatrics floor and meet children from the opposite hall the little bald heads, masks and numerous IV bags. One young person, I would guess around 10-12 seemed to only eat popcorn...I met him/her (I think it was a her but I'm not sure) almost every time at the microwave as I heated up water for mint tea. Even when I didn't see her, I could smell the popcorn in the microwave. The first time I was struck with profound sadness for her, I said a prayer for her, her family, her team of doctors and a prayer of thanks that my child had been spared.
You see, last year I followed an elementary school friend (really my oldest sister's best friend while in Jr. High) as she helped her 4 year old son fight cancer. Although he did beat cancer, he passed away from Graft vs. Host Disease from the life-saving bone marrow transplant he had. As an outsider looking in, what felt like a world apart I read through FaceBook and her Blog as her precious son fought. So many times my heart broke for her, I can honestly say I loved on my kids even more than I already did (& they will tell you that I hug, kiss and tell them I love them so much it drives them crazy at times-not one care is given that they are adults). Being a bystander I never understood fully how she felt and I can tell you, the few times "cancer" was said in my son's room I will never understand how she felt.
After only three days of sleeping at the hospital my husband and I were beyond exhausted. One of the days I tried not to leave at all and showered in Easton's room. I realized that wasn't something I could do, I had to go home for just an hour and a half (30 minutes there & back w/30 minutes to shower), I just had to get out and recharge. The second day Easton named his IV pole 'Linda' because she always followed him and wouldn't stop 'yelling' (beeping). After the first night when I woke to a Doctor explaining the tests and plan for the day I began waking at 4:00am so that I would have time for some coffee before th team of doctors came around. In true Hudson fashion we made the best of the situation, of course Easton charmed most of the staff. There were numerous people that walked in and said, "We are just here to see his hair" and was know as "the boy with the hair." The staff, from doctors, nurses, to CNA's and volunteers we can say nothing but amazing wonderful things. Even when we stayed an extra day because they just wouldn't accept the explanation that he had a severe reaction from the airborne poison ivy/oak in November coupled with numerous viruses,bugs, and bacteria infections creating a perfect storm of ultimate sickness-I still can't complain. They wanted a more definite, clear answer then even we did.
If I said I was never scared, I would be lying. Always in the back of my mind, prowling behind every corner was a carefully held fear that the next test would be 'The One' that forever changed my life. Even now, tears spill down my cheeks as the fear I held in check comes back. I've always known because of my seizures that your life, my life, can change in one breath. To sit in the children's ward of a hospital and count the moments until you are sure your child is OK, sick yes, but not forever life altering is pure torment. Miraculously I only had one day of seizures....for which I am eternally thankful. (One of the doctors thought my husband was kidding when he said I had a seizure earlier not to worry about trying to talk to me, I wouldn't remember anything.)
I still fight the "what if they missed something" monster, today at a follow-up appointed as the doctor told me he was scheduling follow-ups with the Infectious Disease Specialist and Gastroenterologist I had to bite back the fear. When the doctor said it was all very puzzling and he was requesting all Easton's medical records all the way back of infancy then he'd gather everyone together to go over all the tests again along with his medical history (which there is very little of-he's been my healthiest one) to make sure nothing was missed, nothing was overlooked I wanted to tell him that it was ok, we are great, just getting over being really sick. No need to worry....
The one time I broke down was right after we got our extended stay because of the fungus (the team was extremely concerned about the ulcers having a fungus-it was very exciting for some of the residents), my husband and I had just walked down to the cafeteria to eat after waiting all day thinking we'd grab something good on the way home as a "Get out of the hospital treat" (I was leaning toward Mexican with a margarita included). It was after 7:00 pm, we were both exhausted, hungry and worn out, before I realized it I was blinking back tears. Then they began to drip into my soup. I came completely undone over chicken noodle soup. At that moment my sweet wonderful husband talked me back into shape. Reminding me that it was all ok, nothing much had changed-we just had to stay a little longer.
My heart still breaks for all the parents of the west hall, 3rd floor of St Francis Children's Hospital. Within me there is also a new sympathy for my friend that lost her child she lived for almost a year, as a single mom on a floor just like the one we were on. To all parents that have watched their child suffer from a medical issue, it doesn't matter if they are victorious or not, it leaves scars on the soul and my heart breaks for them.
I know, without a doubt I have never been so glad my son flunked some tests.
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| Once again, mom & her pics. Today, at check-up. |
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