Alicia Y. Day was my very first child, born weighing 6lbs 4ozs and was quite healthy. I was looking for a symbolic sign on her body to possibly assist me in naming her; no symbols were identified. For the first week of her life, we simply called her “Baby Day.” I soon decided to name her Alicia Yvette Day, after a dear grammar school friend; I have always been happy with my name selection.
Alicia was only a few months old when she began having sporadic episodes of diarrhea. There were times I found myself taking Alicia from one emergency room immediately to another emergency room; each time I was told by physicians “it is just a virus.” By the time Alicia was eleven months old, not only did she continue having sporadic episodes of diarrhea, she began vomiting too. Even though Alicia was seen by her primary physician and was up to date with all her infant exams and immunizations, the sporadic episodes of diarrhea and vomiting continued. At times these episodes would be so aggressive until every sheet and comforter in our home was soiled from diarrhea or vomit; and we would have to lie on a bare mattress covered with bath towels. I began taking her to other children hospitals hoping they would discover the problem
One day I received a call from Alicia’s babysitter saying, “Pat, something is wrong with the baby.” I left my job immediately and once again rushed her to the nearest emergency room. This time when we arrived Alicia was still very lethargic (sluggish and tired). She was admitted for observation.
By morning, Alicia was rushed to the Pediatric Intensive Care Unit (P.I.C.U.) where everything that was, took a change for what was to come. The doctors were working to stabilize her vitals, as they had no idea what was happening with her internally. By 3:00 p.m. Alicia had a cardiac arrest and was sure to have another one if the problem was not identified and resolved. Exploratory surgery was her only option at this time. However, her vitals were too unstable and in spite of the large amounts of fluids Alicia was receiving, she had not released any urine. That’s where prayer interceded in the situation and God began to work things together in our favor. It seems within moments of making my humble, prayer request to God, her vitals stabilized and she began to release urine. The surgery was performed and as my previous blog (May 17, 2014) stated, over 90% of her intestines was removed.
After spending over 6 months in the hospital, it became home for Alicia. Often when I arrived at her room, she would be gone. Several of the nurses frequently came by and picked her up to walk to the cafeteria, gift shop or perhaps lay a blanket on the grass and let her enjoy the outdoor breeze and sunshine. In so many ways, she became the hospital baby…known as “Baby Day.”
Halloween has never been an event that I celebrated. After denying Alicia’s participation to dress up and partake in the hospitals celebration, I was approached by individual nurses, as well as Alicia’s primary doctor asking if I would make the exception and allow her to participate. Eventually, I gave in and designated that day to Alicia and the nursing staff. Well, that went over fine with them; as one of the nurses brought in her niece’s gold turtle neck and complete princess outfit, while another nurse attempted to comb her hair. Alicia had a great time! Unknowingly, they provided me with an everlasting memory.
I spent EVERY night in the hospital just to be near my daughter (with the exception of very few nights at home). I slept in a shared visitors lounge, curled up in a straight-back chair. My daily routine consisted of going to my job (another department within the same hospital), church and returning to the hospital. I lived out of a garment and overnight bag; which I packed weekly when I would go home.
A treatment plan was developed for Alicia and caring for her became somewhat of a routine. When things were good, they were good. But, when things were go bad…they were bad. Alicia and I both did a lot of adjusting with our new life; Alicia more so, than me. Alicia eventually overcame the desire to eat and carried on as if she did not see food. For me, I learned the true meaning of patience, commitment, family and real friendship.
Alicia’s first night on “the floor” (step down from P.I.C.U.) after being discharged from P.I.C.U. was one of the roughest nights we had experienced in a long time. Her colostomy bag began leaking and needed to be changed. With the location of her incision and the positioning of the colostomy bag, the floor nurses who were new in caring for her did not know how to secure the adhesive stoma properly around her incision. The adhesive stoma was removed and replaced on her skin at least 5-6 times, causing pain and rawness to her skin. Finally, a nurse from the intensive care unit came out and was able to properly secure the adhesive stoma and colostomy bag. That was the second time I sat by watching and feeling extremely helpless as others tried to help Alicia. I felt the pain of the adhesive stoma being removed over and over and over again. As I watched my daughter struggle and cry from the pain of the nurses’ trial and error; I made a sound promise to myself and to Alicia. From this night forth, I will learn everything I can to take care of you, I will not depend on anyone, except God. Later as I comforted Alicia, I told her of my promise and assured her that nothing and no one on this earth was more important to me. I prayed that Alicia understood me and would somehow trust and depend on me as I put my trust in God.
I learned how to be a strong, supportive mom for Alicia, allowing her to only see strength and confidence. In spite of the situation she was handling, I wanted her to remain a child as long as possible, remain care free as any child could under the circumstances. I realized and accepted that the condition existed and the only thing left to do was to deal with it on a day by day basis. Most of all, I never gave up hope and the expectation of her complete healing.
During Alicia’s hospital stay, I met and bonded with lots of parents that had children in P.I.C.U. The parents always returned back to the hospital to bring gifts to Alicia, whether it was stuff toys, handmade blankets or simply bring me food or take me to my favorite restaurants. I enjoyed talking with like-minded parents and encouraging them during their challenge, it gave me purpose. Speaking with other parents was a responsibility that I took upon myself; but most of all, I thoroughly and passionately enjoyed every moment.
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