We are Home

Wow! We made it! He's home! He was born over 2 years ago, finally he is home. I'm to tired to cry. Mindy's beautiful little face is there. LaDonna continues to stay in Oklahoma with her Father and Step-Mom. Donna was 2 1/2 when she went for a visit that turned into years. Ginny, is now mom to Donna. That situation, was ignored is the only way I know how to to put it.

I'm not clear on what the plans really are for William at Children's. Tomorrow I will learn how all this is going to work. For tonight, he is home. I can't sleep, all I can do is sit looking at him. He's at home, in his bed, in my bedroom.

We are at Children's first thing the next morning. Dr. Strickland, Dr. Mize and Dr.Voteler meet with us on the first floor in the back area. The way it works is explained. I have no clue what hyperalmentation cost in todays care. In 1981 it was $147.00 a bag. He used 14 bags a week. I've never known what ostomy supplies cost. The hospital set it up where I would go to Parkland, the Dallas County Hospital, to pick up the Hyperal. The ostomy supplies I would get from Children's. The tubing for the IV pump and dressing changes I got from Children's. Parkland had floors that connected to Children's though double doors. This was a nice convience. At that time, I was to bring him in every other day just for pre-caution. This included blood work to catch any type of infection fast! Once we arrived, the nurse there would page one of the Dr's. to come down there.

Dr. Mize, he has been in the picture from the start. He's role was a GI Dr., working on finding a formula William could tolerate and absorb. He's also a teacher at Southwestern Medical Center. Located right by Parkland and Children's. Dr. Strickland is a Nutritionalist. In the past, Dr. Mize from where I stood, gave up on William. That's where Dr. Strickland entered the picture pages back. These two Dr's rotated on taking care of William. As with any learning Hospital, Interns and Resident Dr.'s changed on us all the time cause of rotation. The one that always remained the same was Dr. Voteler. Dr. Mize and Strickland were the only two that were not Interns or Residents that rotated. That rotation was just between those two. This will fall into place shortly for you.


Dr. Learns to Listen

It's pretty common for Dr.'s to ask a patient when they see them, how are you doing today? When your child is the patient they ask you. When you tell them something isn't right, I expect them to listen. Why ask if your going to ignore what I'm saying? I still think very highly of Dr. Strickland. It only took him once to learn, I know my son. Geeshh.. get a clue, I'm with him 24 - 7. I know when his eyes don't look right. I know the sign of trouble. I can not explain this, his body talked to me in silence I understood. I told Dr. Strickland, something is wrong. He has no fever, he's acting fine at the moment, what I am saying gets blown off. That visit is over, home we go. We arrive back the next morning in an ambulance. He can't see, he's in another world so to speak. He's not in a panic, I am though. He's basically in LaLa land. They get us in a room, here comes Dr.Strickland. They do stat blood work. He does not have an infection. Somehow an error was made in his hyperal when it was made up. This was a chemical reaction. He was there just a few days, then back home. After that, if I hinted a thing was wrong, I had Dr.Strickland's full attention.

Things go smooth for awhile. Time for a check up in Houston. Once there things change on us again. It is decided the line needs to be changed. I'm not prepared for a stay. They let us go back home, return the following week for a new line. This stay was not as long as the last one. He got a new line, we were back home within the month. Changing out the line is normal. It's a short surgery. The difference in changing it cause the tubing needs changing and having to change due to infection is completely different. When pulled for infection, it can not be replaced until the infection is clear.


We enjoy our time

There are ups and downs. William being 2 has began to pull his bag off at night, scratch his stoma up. This is extremely dangerous. The ostomy output is raw stool. If it gets to the central line site, he would get stool in his blood stream, straight into his heart. I'd go in, there he'd sit, all proud with blood all over from him scratching the stoma after pulling off his bag. For the most part it's pretty smooth considering all. Mindy and I are having fun with William. We take him out to the pool for a swim. Mom, William and I go shopping. I seldom used the small pump due to it not having alarms on it. I don't use the vest on him. To scared tubbing will get kinked. Parkland didn't put hyperal in the small bags that would fit it anyway. To make outtings easier, where I felt comfortable using the small pump, I made a harness with a clip. I could hang the bag of hyperal on, a strap for the pump so I could see it. Then I wore it like a shoulder strap purse. Tubing hangs of course. When going in the car, I hung the IV bag from that thing you put hangers on in the back seat area above the window. We are off, we are set to go, do whatever we want, where ever we want.

People looking didn't bother me at all. Looked like a bag of urine hanging on my side...LOL Stare on people, go home, hug your family, thank the Lord for what you have. Life could change in the blink of an eye. My head was so high no one could have touched me no matter what was said to me. Was I ever a proud mama! If a person didn't see tubes going from that bag on my side to him, they would have never known it was him, not me. He looked fantabulas! Looked like the basic everyday little boy. Even his hair was finally free of shaved spots from IV's that had been in his head. This is great!

Things take another little turn. For whatever reason, his intestinal track just never grew. The hope had been as he grew it would grow as most do. His didn't. I think, well, ok. If this how it's going to be, I want him to have food anyway. I inquire about giving him food. If it's not going to hurt him, he should have food. Granted. Try away. Who knows, maybe something will stick with him. This boy loves food. Can you imagine being 2 years old and not having had food, a bottle, or anything to drink through your mouth your for basically your whole life? We start easy. He went faster than I did...LOL This kid went for the really good stuff. Fritos and bean dip. The boy loved that. Ok, do I tell Dr. Strickland he's doing this? His output didn't go up, still think Dr.Strickland would have a cow on the spot. William is suppose to be eating things like scrambled eggs and toast. He loved that to. He loved everything! I kept my mouth shut for a bit about it.

I Knew Time Was Short

Things went good, there were a few times back in the hospital cause of small infections. I was told that due to hospital politics Dr. Strickland would not be taking care of William anymore, never at all. When he came to tell me this news, I looked at him, I said,"William will die under Dr.Mize's care". It surprised me when that came out of my mouth. Call it gut, call it experience with Dr. Mize. I don't know. I just knew he would die under his care. I was told this was due to William not being a nutritional issue anymore. Deep down I felt Dr.Mize did not go for what we were doing with William. Although by this time Children's had sent home a child on hyperal. The child was not under Dr. Mize's care though. His was temporary hyperal home care. He was not long term like William was. At that time Dr.Strickland was having me take him off the pump a few hours a day. The goal was to see how long he could be without it without dropping weight or dehydrating. The idea behind this was to have him on it at night when he slept and free in the daytime. We hadn't gotten to far in the plan when the politics changed. I don't honestly think Dr.Mize cared what I did with William's care. Other than checking his weight, doing some blood work, asking how's he doing, he didn't have a show a interest in him, or what we were working towards.

Although he appeared normal in most ways. He was behind delevopmentally in other ways. There was a school for kids to help them catch up. Took him for the testing. He's going to start school on Monday! This is great news. We stop by mom's house after that meeting. I'm standing at the fridge, he walks up to me, looks up at me, I knew right then, something is wrong. I looked at him, said out loud, you are going to leave me, aren't you son? My mother, said,"What did you just say"? I replied, I don't know. Something is wrong, I have to take William in to be checked. I called to let Eileen know I was on my way. When we got there he was running a low temp., by the time Dr. Mize got down there, William was running all over the place having a blast like nothing was wrong. Dr. Mize sent us home. This is a Friday. It's September 18, 1981. Tomorrow is Mindy's Birthday party at McDonalds. We get home, his temp is up there. I take him back. Dr. Mize once again sends us home. I'm beside myself. Within an hour of being at home his temp is 105. This time I said to hell with him. I took him to Parkland. By the time we got seen, Williams temp was 108. He has shakes, he's not doing good at all. The intern wants to know who his Dr. is. I tell him, he calls Dr. Mize. I will never forget the look on his face when he walked back in the room. He said, I don't believe what he said for me to do. He said, Maam I have no choice but to do as he has instucted me to do. I thought this is like the begining of it all. He sent us home. Dr.Mize told the intern, William spikes temps, it's not anything. I looked at him, told him. He has never just spiked a temp like this! Please do something. This intern was so torn that he had no choice but to follow what Dr. Mize had told him to do. We go home. I call Houston, I call Dr.Strickland at HOME. I told him what was going on. I asked, would you please meet me at parkland. Dr. Mize will not admit or even see William. Dr. Strickland said, I will met you there. I call my mom in a panic. I've got 12 kids coming to McDonalds for a birthday party. Mom handles it. Houston calls as we are running out the door. I can not believe I did this, I was so rude. Just said, I can't talk, I'll call you when I know something, hung up the phone.


It's To Late

Walked in through the back emergency doors at Parkland, there is Dr.Strickland. He tells me we are going over to Children's. He informs me Dr.Mize will see William. Hell, William was in such distress now. He had nothing but tremors thoughout his body. His temp was so high he was totally delirious. We didn't stop at the back area, shot straight up to the room. Same room we started in after he got out of his first surgery. The room was quickly filled with nurse's, Dr's and Lab techs getting blood. Dr. Mize is in charge, I'm very unhappy. A total amazement to everyone, he does not have him in ICU right them. Temp is 111. All night off and on, William crashes, they call it that. Dr. Mize appears the next morning telling me, he has a sever infection. He's going to be moved to ICU. He will be intibated, his body paralized by a drug so none of his energy is used. His body to rest so the antibotics can fight for him. I wanted to beat the crap out of him right then and there. How dare you come in here talking like I didn't know he had a flipping infection. Why the hell wasn't he put in ICU and treatment started on Friday. I really wanted to hurt him. There isn't a four letter word, I probably invented a few that went through my mind.

The process of moving him, and getting everything done takes hours. I'm not going up to the 6th floor waiting area. I go into the room he was in, call my mom. Hours and hours and hours go by. It is afternoon now. If I'm not using the phone, I'm sitting on the floor indian style facing the ICU doors, watching as they go in and out of the room they put him in. Word is out, nurses who are not working are coming up. A couple of mom's I'd met during their stay with their child were appearing. I'm asked if I will go down to the first floor family room. NO WAY.. I'm staying right here! Finally, they take me back to him. This is the first he has been on machines that did his breathing for him. There are more tubes and equipment than I've ever seen before. I took his hand, he squeezed mine. The nurse said, does he have a grip on your hand? I said, yes he does. She said, that's not possible. He's paralized. She sees though, then says, it must be a reflex. I knew it wasn't. I knew exactly what he was asking. I brushed his forehead gently moving his hair. I kissed his forehead. I asked, you want to go? You want to be free? Within 2 minutes of being in the room with him, I knew. I have never had a doubt, he wanted permission to go. When the word free came out of my mouth, every alarm in that room went off. I quickly gently brushed his forehead kissing him bye. I knew as soon as she made it around to that side of the bed, she'd get me out the door. Codes are going, they are going nuts in there, the crash cart goes in. I'm doing good to remain standing. My legs want to buckle, they feel like noodles. I glance up the hall that we once lived on. Nurse Linda Little sees me, she fell apart standing right there. I could hear crying all around me. Some of the floor nurses, said come on Vickie, we are going to take you down to the family room. I'm thinking why? What is the point? I will now learn one reason they wanted me down there. A few minutes pass. There are alot of nurse's in there with me, a couple of friends that came up cause someone called them. My mom's number is busy every time I call. I give up, I called her neighbor asking them to go tell them to get off the phone! A nurse, I do not know her, is there. She keeps moving my hair out of my face. I'm getting somewhat irritated. My stomach has done a major flip flop. I want some privacy, no one will even let me go to the bathroom alone. I'm thinking please don't make me hurt you. Please let me breath. Dr. Mize's head pokes in the door. He hesitated to step all the way in. Does he think he's going to tell me something I don't already know. Please don't insult me twice in the same day. He doesn't, he half bows his head. Steps on in, tells me, if I want to see William, I can after they have him cleaned up and everything off him. I declined. I don't regret it either. He then gets to the real point of what he wants. He wants concent for a autopsy. I'm like **** you. No way is he going to be cut on anymore! The phone in the family room rings. It's Dr.Voteler. He is calling from out of town. He will be there in the morning. He's been notified of the events. I'm guessing Dr.Strickland informed him of what all went on. He asked me, if I would let him do an autopsy on William. This would have to be a request from me in order for him to be the one to do it. I didn't respond quickly. He tells me, they need to know if the infection is the only cause. I knew without another word what he was saying. I said ok.

Brenda Anderson drove me to my mothers house. It's really late that Sunday evening. My mother comes out of the house to the car. Puts her arms around me, ebraces me. Says," I'm proud of you". She too brushing my dirty hair from my face. I didn't ask why she was proud. At that moment I knew. All of us would give our lives for our children. That truly would be easier, then giving your child or loved one the approval to leave you here without them.



If you are wondering about Dr.Mize? Dr.Voteler called me the next afternoon. He told me his findings. He asked if I wanted him to bring charges against Dr.Mize with the Medical Review Board. He asked if I wanted to file a complaint with Children's against Dr.Mize. I remained silent for a few moments. Thought to myself. It wouldn't change a thing that happened. Did I want him to suffer too? Yes I did. I chose to decline filing anything against him. His actions were known through out Children's. I wanted him right there day in and day out. Hearing the whispers behind his back. I wanted him to remember William Charles Sanders every day when he stepped foot on the 3rd floor of Children's. This was not a child no one knew. This was a child that had lived there for a solid year of his life. The hell for Dr.Mize would be right there. Working with so many wonderful people who loved William, who went though the battles with him. Dr.Mize was at William's services.



The page titled emotions is the day of planning his services and the weeks to follow. Things I learned about life, and my own personal feelings.




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