With no time to spare, I've got alot to do really fast. George, the security guard, comes up, helps get his bed apart and stuff carried down to my car. Make fast tracks to the house, grab some more clothes for us, jet back out the door to get back to head to airport. Time is a major factor here. The arrangements with Dr. Dudrick in Houston had been made. William was already scheduled for surgery tomorrow there. Have to kick butt into a no messing around mode. Think the rush made it less scary for me. Helped with short byes to eveyone at Children's too!

Nurse Densie takes us to Love Field for our flight. We went Soutwest Airlines. Was the fastest way to get there. Here we sit on plane with basically everyone staring at us. He has a tube down his nose, IV with heprin lock, meaning, the IV is in place, not hooked up to fluids. My thoughts are, I hope his ostomy bag doesn't start leaking!! We are sitting with two business men. One is just totally taken by William. Plane lands, this man helps me get overhead bags, then he helps me with my other bags. He insit on taking us to Hemanns Hospital. I have no clue what I was thinking back then. I took the ride instead of going in a cab. In todays time, I would not have taken him up on it. I'm in a strange city, going to a new hospital. I am a touch scared. Children's had become our home in a way. Now I will learn how so many felt away from home with their children in the hospital.

Admissions was a ZOO!! This hospital is enormus. It's not a children's hopsital, just has a children's wing. The lady in admitting is asking me questions that I have no clue the answer is. Can tell we will probably still be sitting right here in the morning. I know my sons name, my name, home address. I know the Dr. who he was sent there for. I know his Dallas Dr.'s. I know we are there to get a central line, and I'm to be taught how to take care of William on Hyperal at home. She doesn't want this information. She wants stuff I don't know. Why doesn't she just pick up that friggin phone, call Barbara Noblin in Dallas? I keep telling her, she is who you need to talk to. I'm almost in a panic thinking oh god, we are here, but can't get in. She can't find William's name anywhere as an incoming admission. Have no clue what finally gave her brain a clue, she finally decided to pick up the phone and call Dr.Dudrick's office. I would think it would have been pretty plain to her, he was being transferred from another hospital by just his physical appearance. She wasn't new at this job, I asked her that question. The group up in the Hyperal office put her on straight path real fast. All the sudden we are out of there walking what seems like 500 miles to where we should have been taken.

Other than it's a completely different decor, the first room rang bell of memory. Big room with 4 hospital baby beds. Within a few moments, here come the floor nurses. The usual to begin, stats on him and so on and so forth. Now here is a child a year old with mom. The nurses don't know me, I don't know them. I'm fixing to learn how spoiled I was at childrens. They think I'm going to leave the room while they mess with my son. Education for them to begin as well as for me. I didn't leave the room. We came to a understanding really fast. You don't mess with my son without me here, unless I'm out of the room and something is wrong. I came to understand really fast, they haven't had but one long care kid there in the past, they are not used to parents being there all the time to take care of the child. The long term they have is on the back side of this area. Here comes his mom to welcome me and meet me. Her son is Jason White and has been in the hosptial for 6 years. Jason is Dr.Dudrick's patient too. His problem is not the same as William's, he was on Hyepral for his problem. They were from Texarkana. Between Cindy White and a few others, I was feeling less like a fish out of water.

After the central line was put in. This is a IV catheter with very thin flexy tubing that is placed deep down in the jugular vein. It comes out on the chest where stitches kept it in place. You will see in the pic's when I get them up. Yes, I'm going to put up a pic page :) The staff from the Hyepral office are great. Now Dr. Dudrick was a totally differnt story. He had a Nobel Prize in Medicine for inventing Hyperal. He's one of these, I'm the surgeon, your the idiot parent. Other than him saying the child is fine, or child isn't fine, that's all you need to know. He went to school to be what he is. Not your business what plans are with child are. If you didn't like it, take your child and leave. That simple. I'd never been treated this way. When he came by the room to check on the child, that's what he was there to do. He was not there to answer questions you might have. Our second meeting left me in complete tears. William's line was put in the next morning. We went to a private room when he came back up from surgery. Over the next weeks, a prothesis man drops by the room. William wants to walk. The burned foot has stopped him. Now I didn't know Dr.Dudrick had requested this man to come by. He pops in, introduces himself and of course I was thrilled! Within a week he's back with this little foot/leg thing he had made, and a pair of baby walking shoes, with one shoe being a size larger. This velcro closed, looked like the blue leg braces with flat sole on bottom you see people wearing after surgery. Except this had a built in arch for his foot to fit on that would give him balance. It's skin tone and of some kind of plastic. He put that on William,within 4 hours, William was hobbling around on his own two feet. Within a few more hours was having hell keeping up with him. Keep in mind, I'm pushing IV Pole he's connected to with tubes. He's testing his ability to see how fast he can move.

Months have gone by, it's Easter. We are still there. I'm not really sure why, but we are. Day in day out about the same thing. We've got another hospital family now. I know the nurses, they know me. My cousin lives in Houston. Reni would come up, get our dirty clothes, take them home clean them and drop them back off. Word is we are going to get to go home. I'm so happy, finally, we are actually going home. Home to our house to live!! We will have to come back for monthly IV site checks. That's ok!! I am ready to go home. Couple of days pass, I'm packing us up. Reni brings up the clean clothes just before Dr. Dudrick comes into the room. If I'd had a clue of what was fixing to happen, I would have locked myself in a bathroom somewhere! Dr. Dudrick comes in and tells me, we can't go home. I'm stunned, I asked why. He tells me they think William has a respritory problem. Thinking to myself bullshit!! He don't have no breathing problems. Now I said I was thinking this to myself. I already knew better than to question Dr.Dudrick to much. Reni's there, she hits him with WHAT?? Why do you say that. He seems fine to me. The clouds moved over me right there in the room and the thunder hit so hard!! He informs me to take my child and leave. Told Reni I hope you nor your family ever need my services, he would not take them as patients. He's not saying this in low voice either. Nurse comes from nurses station and closes the door. I'm thinking OH OH OH OH .... now what. Reni and I are standing there just stunned. I'm thinking, ok. I'll head for Children's when we get home. Problem was, he had to have Dr. Dudrick. Children's at that time did not send kids home on hyperal. What do I do? Suddenly room got quiet, he looks at me and says, I believe he has first stages of pneumonia.

Within a few hours, chest x-rays are done. William is moved into ICU. Atleast the bags were packed already. Him going into ICU means I have we no longer have a room for our belongings or for me to sleep in. Cindy comes down the hall, we move our stuff to Jason's room. During this time, they are settling William into his place in ICU. They get him settled, I go in. Ok folks, couldn't anyone have told me what was going to be done to him? Here he is in a big oxygen mist tent with tubes coming out of the side of his chest. I'm still puzzled by all this. No fever, no signs of even a cold, now in ICU with tubes from his side. If this is the early stages, guess an advanced stage would have put me into a deep shock. After going to talk with a very resourceful person, I learn what is behind these drastic measures. I sure wasn't going to question Dr. Dudrick. He's probably the only Dr. I've ever felt threatened by. These measures are preventive. They didn't want to have to remove and replace the central line. If infection was to advance, they would have to do the removal, then a replacement. Thought I had a better understanding of the central line. I thought the big worry was the line site getting infected. That was why all the care and changing the bandages daily were done so sterile. I didn't understand that any infection, say a ear infection, it could cause line removal if infection wasn't caught extremely early. William had been pron to several staff infections in the past. He had not had any since the line had been put in. Staff infections can be life threating with a central line. I felt learning this little tid bit of information should have been taught, or explained to me by the Hyperal staff.

William remains in ICU for weeks. The middle of the afternoon I'm out in the lobby gabbing with other parents. Look up and there stands Dr. Voteler. Talk about a site for soar eyes! I was so happy to see him! He had come to Houston for a seminar. We go in and visit William in ICU. He's feeling great, a bit unhappy he is stuck in that bed under that tent. He was quiet used to being on the go around the floor. The playroom, the lobby, visiting others, he was not used to being stuck in the bed all the time. The day finally comes when the tent comes off. He remains in ICU for still a few more weeks. Finally he goes back to a room. Once again he is doing great. There is still no word of going home. Months and months go by. It's Thanksgiving again. Then he once again has a birthday in the hospital. He's 2 now, we have been there a year. Christmas comes and goes, the New Year comes and goes. No word of going home still. I try my best to keep smiling, I'm tired, I want to go home!

It happens!! It's March, I'm ready! The talk and arrangements are being made between Houston's Hyperal Staff and the staff at Children's in Dallas. The fear hits all the sudden, thinking, does this mean we are going back to Children's? Nope!! we get to go home. He's to be at Children's the day after we get home, just for a visit with the Dr.'s there. A new way of life will start now. Although for the most part, his hyperal is pumped through a big on IV pole infusion pump, Dr. Dudrick had also came up with a vest type small pump. This pump was not for any kind of long term useage. It had no alarms on it. Was about the size of a pocket radio. The hyperal was put into small packets to fit into pockets on the vest. Much like a fishing vest, with some buldges and tubes showing if you didn't tuck them in really good. I didn't tuck them in really good for fear it would pinch off the flow. Off we go to Houston's Hobby Airport to fly home. Only a few set backs getting the security people at Houston to let us through. I had letters with me to help us get through security. Needless to say, we didn't make the flight out we were suppose to cause of security. Flights from Houston to Dallas and vice versa go out every hours, we were on the next fight home!



Page four is the last page. There are two pages of pic's after the last page. First page while in hosptial, first year of life, second page were taken when he finally got to come home.

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