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My son

January 3, 2012

My son

I sat on the couch trying to ignore the pain in my body. My son had been up sick all night. I was so frustrated he had been sick for months and each time I took him to the clinic or to the ER we could never pin point what was going on. These days he was a shadow of his former self. He had dark circles under his eyes and was less active. As if he had heard my worries he came into the room and sat next to me. He asked me to hold him, something he hadn’t done in a while. I held him in my arms and could feel his heartbeat in every inch of skin that I was in contact with . He was wheezing and gasping. I asked if he was ok. He said yeah mom I have heartburn. I asked if he wanted Pepto Bismol. He looked at me in the eye, that eye contact broke my heart. His face was very pale his beautiful brown eyes were huge with a sickly energy the dark circles made his eyes seem sunken into his face. My heart told me he was sick no matter what the doctors said I knew in my soul that my baby was very sick and time was running out. I asked him to tell my what hurt, He put his little hand on his chest and said “mom it feels like something is in there, my heart hurts it feels like its having a baby”. I hugged him. We had been to the ER the week before and when he had told me these same words the nurse’s cold reply was “He must be doing it for attention, he doesn’t know where his heart is.” After that we had sent him home saying it was his asthma causing the cough he had every night and the vomiting and that all the coughing had caused his ribs and chest to be sore. That was it no testing just words. We had went home trusting in the people who were paid to take care of him. A few days before he had been very lethargic, no fever but it seemed like he should have one because he was that sick. So once again I took him to the clinic. He couldn’t even walk without assistance. I had to help him. No one seemed to notice or maybe they did and didn’t care. When we got into the examining room my big boy needed helping climbing on to the examining table where he immediately fell asleep. The PA came in a few minutes. He pushed on his stomach asked about his symptoms and then said he had the stomach flu and ordered lots of fluids and rest. I had asked many questions and even argued with the PA asking how could it be the stomach flu every other week and why was he having chest pains all the time and why was he breathing weird. The PA’s answer “Maybe he sees your symptoms from the MS so he thinks he’s sick like you”. I wanted to continue to argue but seeing my baby there suffering listening to a Dr who didn’t believe him tore my up inside so we went home. I took care of him the best I could, always having children’s pain medications and his inhaler ready. But today was different. He was far beyond worse and this time I promised myself that I would not let them brush him off. I immediately called the Dr’s answering service. The Dr. on call was one he had seen in the past who like the PA did no testing. His answer to my worries was to bring him in to see the regular doctor and that he was unable to give my medical advice because was not the last person to treat my child. I hung up on him midsentence. The blood was rushing in my ears. I told my husband “its time we are going to make him better or we will take him to every single doctor we can find until we do”. My husband was in full agreement. We helped Joseph to the car. I drove as fast as I could. The panting coming from my son was like an animal noise. In my mind I believed he was going to die. At the ER they took him right in. The doctors and nurses poked and prodded. They said they couldn’t find anything wrong and were about to send him home. The nurse and doctor came with the discharge papers when Joseph sat up and threw up. Once he started he could not stop. The doctor had a change of heart and for the first time seemed worried. He ordered a chest X-ray. Things began to go fast after the X-ray. Nurses and doctors were in and out of my sons curtained bed. We knew something was happening and it wasn’t good. The doctor came to us with a serious look on his face. “His X-ray came back weird. I have never seen anything like this before. I do not know what it is. We have to send him to Tucson.” My heart felt ripped out. I wanted to cry but my son was watching me, I had to be strong. So I lay on the bed next to him and whispered into his ear “Big dawg Fofe you are going for a ride to Tucson.” He looked at my eyes huge with sickness and fear. “Why mom? I didn’t want to come here you made me and they poked me, I want to go home its all your fault.” These words killed my inside but I knew he was scared and had no way to control his fear except to be angry at my. I felt like I couldn’t breathe so I left Joseph in the ER with my husband. Sitting in the lobby staring out into darkness I felt like I was in an avalanche. Falling into nothingness and so very cold. I did the only thing that I could control. I called family and told them he was being sent to Tucson and it was serious. I controlled my tears but my mind was a whirlwind jumbled thoughts of what if’s, should’ve, would’ve, could’ves. I saved the hardest call for last. I called my 12 year old daughter and asked her to turn on speaker phone so my younger 10 year old daughter could hear at the same time. I said in these words exactly “Girls I have to tell you something but you have to be strong for me. Your brother is very sick. The Dr is sending him to a hospital in Tucson.” The girls began to cry and one asked the unthinkable “Is he going to die?” This word had past through my mind many times since he had gotten sick but never had it had such a force behind it as it did now when it came from the mouth of my child. I made promises to my daughters that I didn’t know if I could keep. I promised he’d be ok. I promised we would be home the next day. My girls listened. The words coming from my mouth were no longer intelligible I had lost my grip I was crying uncontrollably.
That’s when things became hazy. I realized I was in the middle of MGRMC’s main lobby crying like a baby. There were people everywhere, the hospital lobby was packed for it being so late. But I felt so much pain for my son I didn’t care it didn’t matter. I wanted to lay on the lobby floor and cry until I couldn’t cry anymore. But I had to check my emotions because Marialisa and Rosaura were on the other end of the phone silently listening to me lose my sanity. I had to be strong for them. I apologized and told them I was tired. They told me they loved me and would pray for Joseph. I wanted so badly to hug them and comfort them but they were home with my brother and I was at the hospital. We hung up and I felt so sad a sadness I can never truly explain to anyone. It was like what I would expect suffocation to feel like. It was everything happy being sucked out of me and replaced with nothing but coldness and fear. I watched out the window a few more minutes I didn’t want to go back to Joseph and lose it again. I repeated words of encouragement to myself and it didn’t help. I was scared beyond any fear I had ever had. Finally the image of Joseph coming to the couch and asking me to hold him popped into my mind. I could hear his voice clearly and it knocked all fear out of me. I had to be numb to be there for my son.
My feet carried me on their own. I walked through everyone in the lobby. They asked me if I was ok. I don’t think I even answered. I truly do not know all I knew is that I felt deep inside how could I explain to strangers that the boy I loved most in this world. The boy who I wanted all my life. The boy who did all he could to make me happy was sick. And not just sick but deathly ill. How could they understand the love I feel for my son when he comes into the room and flashes his beautiful smile. I walked to his bedside and he was mad because I had left. I held his hand and tried to make him happy. He fell asleep. The nurse and doctor came in and told us he was to be flown to TMC in Tucson. We asked how much I weighed and said I could fly with him. Things were happening so fast. Family started to show up. People were crying and praying. Giving advice. I can honestly say I heard nothing but the adrenaline rushing in my ears. My baby was very sick and I had never felt so lost, so not in control. For a moment I looked up and seen my husband Joe staring at Joseph and felt a small comfort and even took the time to thank God that I was not going through this alone. The look on Joe’s face told me he was going through the same things I was. I hugged him I wanted to take care of him and Joseph to take Joe’s fear and sadness and to heal Joseph’s illness. But I couldn’t and it hurt.
We went from being in the ER to being in a helicopter. Joseph was still throwing up and I could do nothing to help him. They had given him a blue paper container to throw up inside of. He was in the front of the helicopter and I was in the back so I had a clear view of my baby. He was having trouble opening the container and was puking on himself and everywhere. It made all my mommy instincts rage I was tempted to unbuckle myself and help my baby and even had my hand on the clasp when he finally got it open himself. I watched him the entire trip. He turned back a few times to look at me but finally fell asleep. When we arrived at TMC 45 minutes later they rushed him to a regular children’s room. he was admitted at 1 am exactly. He slept. I sat in the chair watching him sleep. Nurses and doctors came in all night. In the morning Joe and our daughters arrived. Dr’s came in and out but no one had answers. I felt more lost then when it had started. At 2 am they decided to move him into PICU. His breathing was like watching someone who had run a marathon. He was panting. His stomach moving extremely fast. He was moaning in his sleep. His blood pressure was 185/124. The Drs were extremely worried. So worried in fact that Dr. Johnson sat in the room with us all night, right next to Joseph’s bed watching him. It was comforting to have a Dr actually care about my son. The next morning was when things took a turn for the worse. A group of doctors came into our room. We knew by their expressions it wasn’t a good thing. We started throwing words around that we didn’t understand. But one Dr explained it all to us in our language “Your son is very sick, his heart is overworking. He needs assistance to ease the stress of his heart before he gets too tired and it stops completely.” She then told us about a ventilator. It was one thing to agree but another when they brought the big machines into the room. There were blue tubes coming off the machine and they explained to us these tubes would be put down our beautiful son’s throat into his lungs to breathe for him. This brought a memory of my grandpa on his death bed with the same machines. I was so scared yet so numb. I walked up to Joseph and I don’t think I truly realized the extent of what was happening because if I did I would have talked to him more. I explained to him in his ear that the drs and nurses were going to help him rest. He whispered that he was tired. I told him they were going to put him to sleep and help him breathe. That was all I could tell him. I was hurt beyond any hurt I had ever felt. Then I turned and seen Joe. My husband looked so sad and I knew I had to help him. He wasn’t going to leave. I could tell in his stance that when they would tell us it was time to go he would fight them. So for my son I swallowed my emotions and grabbed my husbands hand and walked him out of the PICU.
I don’t remember where we went or what we did. I just remember walking back into the room and seeing my sweet angel asleep, tied to the bed with a tube coming from his mouth taped to his face and another smaller tube coming from his nose. I walked to him. I noticed everything was a mess. The nurse seen me notice and told me “Your son is very sick but he’s still a fighter.” I don’t know if she meant those words as a comfort. But that’s what broke me. I had to leave the room or I was going to hit her. The last thing I wanted to think of was that my son was scared and trying to get away and was searching for me to save him and I wasn’t there! I walked out of PICU. Out of the hospital and kept on walking. I found myself in the middle of a maintenance yard on a sidewalk crying my eyes out. People were walking by looking at me like I was a crazy woman, it didn’t matter. I was angry hurt and sad. I stayed there for a long while and finally called one of my best friends who helped me get it under control. Without her guidance and reminding me to have faith in God I don’t know what I would have done.
Joseph was on the ventilator for 5 days. For 5 days I didn’t get to hear his voice or see his smile. But he did hear us. We had a code he would blink his eyes once for yes and twice for no. So when he was conscious he could communicate. I asked if he was scared and he blinked no. I asked if he was in pain and he blinked no. That made me feel a lot better. We prayed and read to him. Finally he came off the machine. Hearing the first noise he made was like hearing your newborn for the first time. I cried and was so very thankful. They started to wean him off medications and he began to hallucinate. It was awful but we helped him make it through. 18 days later my baby was released. He was very weak and tired and 15 lbs lighter but he was ready to leave.
He is sitting here with me as I type this. Each time emotion overcomes me and a tear falls he wipes it away. I love my son Joseph Steve Barbosa JR.

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