Angel Joey

May 16, 1988-January 17, 2000

Joey was born May 16 1988 on the Streets of New York City. He was taken with his birth mother a 17 year old to the hospital. They found that the mother had no prenatal care and had been taking cocaine ,crack and alcohol. She stated she did not know she was pregnant. She was discharged. Joey remained without a name. They tried to find the mother but she was not known at the address she had left. This little child was left at this hospital until we were asked if we would take him. They have to wait 6months before a child like Joey can be put up for foster care or adoption. My husband and I take care of adults in our home with developmental disabilities. The program was asked about children, to try placing some in homes. Our name came up. They told us he had no name and they did not know how many complications Joey had. The records were not clear , they thought he was not that serious of a case. When they went up to see him he looked almost normal. They knew he had CP but not much more from his appearance. He was sent with a nurse from New York to Buffalo on Jan.20 1989. He was brought out to us with several staff nurses and social workers. It was a happy day for everyone. I'll never forget his curly dark hair and sweet face. He only weighed 13 pounds. I ran out to greet him and took him in my arms. We had waited so long from the time we got the phone call to take him until we had him. We all sat down to discuss his care. We were then told the awful truth of his diagnosis. They told us he had no brain and he would have to return to New York. He had a terrible cold at the time. I thought what was going to happen to this poor little boy? He was so cute. We talked it over with all the family. And told them to let him stay for a few days to see what we could do. They agreed. Who would ever know the road that was to come. The first night was awful. He cried all night. My daughter and I stayed up all night with him. He would not settle down. So I got the paper work out that came with him and found a phone number. It was to the hospital he had come from. I called. They did not remember him. I thought how could that be? He had spent his entire life there. So I asked what it was like there. They said it was cold and the children didn't have enough blankets and the lights were on all the time. So we cooled the house down. We heat with wood and have a very warm house. We live on a farm and that feels so good in the winter when you come in from doing chores. So I thought about what we should do to make this little boy feel at home? We have a large counter in out kitchen and fluorescent lights over it. I put him in his little nip-nap and put him on the counter under the light and dressed him cooler. That seemed to work. This is where he slept until we could gradually get him to his crib.

That first year we had many trips to the ER because I was so nervous  and didn't understand a lot of his care.  A small country hospital, they just did not know how to handle Joey and often asked how did you get him? One night in the ER a nurse asked me why don't you send him back and get a better one. Today I would have put her license on the line. But we were so innocent ourselves. You grow so much with taking care of these children. Joey giggled. One day he rolled over. One day he even took 12 steps with the PT throughout manipulating the back of his neck. When he came to us they said they were not sure how he ate. He seemed to do well at the time with a sippy cup not a bottle. We had to feed him often about every two hours. He began to gain weight and seemed to be doing ok for the most part. He had many tests. His first doctor we had to have her taken off his case. She was repeating tests over and over. She made the remark to me. "Don't you have children of your own?" She didn't last long after that. These kids make you strong because you have to fight for them constantly. Joey continued cooing and seemed to be very happy at times. We were trying to give him every opportunity with his senses of touch and smell we knew he had and we just did everything we could think of that he could possibly experience. We took him out to the barn , to town so everyone could get to know him. He went on a trip to Albany to a family care conference. The car was full of equipment and supplies to get him through the week end. He had his trachea at the time. We wanted other providers to maybe consider taking a child like Joey.  His first stay at Children's was scary for all of us. We didn't know how to get there. Joey had to be medivact from the small hospital to Buffalo on a helicopter. I was so afraid for him. Just watching it take off out of the parking lot and fly away wondering if he would make the trip. He had rhino virus we had found out. When we arrived a line was running from the top of his foot. He ended up having a third degree burn because it infiltrated throughout the tissues. He later had to have it debreeded and cared for just like a major burn. That was when we found out we had to stay with him while in a hospital and not to take anything for granted with his care, that we thought they should know.

The second stay was to receive his trach. They told me we would have to have nursing care in our home. I did not know how I would handle people coming and going in our home. They told me I did not have to bring him home. I said OH sure after we had him for two years. So we were allowed 12 hrs. per wk at the beginning. This is when we met out dear friend and like family now, Shirley that stayed with us all these years. Joey did well until about 4 years. Up till then it had only been the Proventil treatments and trach care. Now he was battling hypothermia. We tried every thing; hot bottle warmers, electric blankets that we had to watch very closely . Warm tub baths. hats, gloves. He dipped down to 87F. one time. We met with a water bed builder. We designed a special bed for Joey but the state said it would have to go through Medicaid first. I knew Joey could not last that long. Being worn out and Nurses were getting discouraged. I had to do something. I called the ER in Buffalo and said I can't do it any more. I've had it! No one wants to help me. I don't know what to do anymore. I told my husband. I'll never forget it, he started crying. He said lets keep him a couple more days. I was worried about him too. I called the Nurse from the agency she told me I was doing the right thing. and she would meet us there at the hospital. Well they kept us in the ER and wanted us to sign a DNR. We told them we had no rights to do so. They said oh yes you do. We argued. When they knew we would not give in they found him a room. From there they said we could use a warming blanket heated using water. A small pump pumped the water through the plastic blanket that laid under him. It worked great so we brought Joey home again along with more nurses hours. He continued to grow and had some small problems with upper respiratory and ear infections all the time, a lot of antibiotics and breathing treatments and CPTs. He was home schooled and a PT once a wk and we continued the range through out the week every day. He had splints for both hands and feet. He had two wheel chairs. By this time Joey was to big to fit in a baby bath and his machines and equipment were taking up the whole house. We put in a request for an addition on our home. That was a very large ordeal and ended up costing us much more than we planed. We had $20,000 to work with but put another 20 into it. We then had to purchase a van. My friend Shirley and Joeys no. one nurse convinced me to further my education. She said why don't you go into nursing. So I did with the help from my husband I went for two years. I could not have done it without him. He filled in where ever he had to. We still had three adults with us and our two children to care for. I think back and wonder how did we do it? Of course our family thought we were crazy. We didn't pay much attention to that. My last year in Nursing school Joey became very sick. He ended up with renal failure. The doctor said "I'm not saving him if you don't take him home" I thought do you think you're God? Joey had to have a hemofiltration system on him to literally filter all his blood. The dr. said he can have it for a wk. then we must remove it or he will lose his leg. Joey pulled through again. Brought him home with some more added nurses hours. We had a big 5th year birthday party for him and planted an apple tree. Birthdays had come and gone. Joey seemed to be sleeping more and not moving as much. Everything seemed to be going slower. His body temp. continued up and down, mostly down. A good temp for him was 93.5 ax. under the arm. He was biting his lip. We had the dentist file it down so he would be more comfortable. Little things came up and we were able to fix them some how. We read a lot. Some times the nurses and I would get our books out and try to figure him out but then he would do something else. Nurses were a constant problem. I expected a lot from them. They had to part of a team and I would not allow sleeping at night. Many left when they were caught. Joey attended as many functions as possible; weddings county fairs where ever we went if possible he would go. In 1998 March we noticed him loosing weight and peeing allot I made a remark to the nurses I suppose he is diabetic now. Sure enough a dr, appointment the next day indicated so. I explained to his dr.what he was up to. they got the glucometer in and it read while we all stood over it waiting, 560. The dr. said well you know where you have to go now. Yes ER. Away we went. By the time they could get all the lines in him to get him shipped out his sugar went to 980. He was not looking too good. He was up to Buffalo again for two wks. We had to take classes. Brought him home. This was when every thing just seemed to go down hill. The dr. in Buffalo said that they  often see children that have asthma and take steroid treatment end up with diabetes. They would not give me a standing order. Glucometers had to be done at least 4 times a day. He would go from 20-590. It was so difficult I had to call the ER sometimes on wk ends and of course they didn't know who we were or who Joey was. Not a good program and yet they assured me they had a wonderful one. Many arguments with the dr. they would not listen and the days were hr. to hr. sometimes waiting to have to run to the ER which we did many time the last year. Some days went smooth but most of them were not. It was hard on our marriage also. But our love for each other and Joey pulled us through. We laugh about it now how we had to have our arguments on Sundays when the nurses were not here. Joey now weighed 85 pounds. We were looking at  lifts for the tub and the Van but we were left on our own to search everything out. This is an area some one needs to take care of.   Lifting Joey was becoming a problem. My hip was bothering me and I was getting older. We all think we can do anything if we set our minds and bodies to it. We have to realize our limits before everything can crash down all around us. In March Joey developed bilateral pneumonia. I forgot to mention his G tube. He had to have a NG down for two years they taught us how to place that. Also I want to add my husband Jim learned all his care too. Then when he had the renal failure we told them to go ahead and put the g button in which they did. Joey was 7years at this time. We had to get enough fluids into him and was just not eating like he did. The swallow study was not good and ordered us to discontinue oral feedings. Nothing by mouth; another sad day for Joey. He liked his rice cereal and we used thick-it for the right texture. The g-button had to be removed it was too tight. It doesn't work well for chunky kids we found. The g-tubes worked best for Joey.

In March of 99 the pneumonia took a big toll on Joey. He had no DNR at this time and they had to do everything for him. He ended up on a oscillator instead of a vent because his lungs were so bad he could not expand them or they would burst. They had become brittle I was told. This machine was horrible to see. Joey had to be totally sedated it put 250 breaths a minute into him. He was on it for a wk. I asked the dr. how much more does Joey have to go through? He said lets give it one more day. Again Joey was getting better. He came off this machine and went to regular vent. He was in the Hospital a total of 30 days. I went up every day and did his day to day care to make sure he did not get any breakdowns. We got him home. Three days later he got sick again. I was at the end of my rope. I was just exhausted. The hospital trips were 2hrs each way every day. The dr. sat me down and said you are doing 3rd. year med school with Joey. Does the state realize what kind of care he is. I broke down and said I didn't think I could keep up anymore. I just couldn't fix it anymore. Joey had just got beyond what I could do. And I knew I could not do less for him. It was time to make a big decision. I sat my husband Jim down I told him we were going to have to find a place for Joey. I couldn't do it anymore. It was one of the hardest days of our lives. I felt if I had made the wrong decision in his care it could mean his life. I just could not handle that responsibility. We phoned the people in charge, told all of them and they we were looking for a good place We would remain providing Joey a home until we found something we thought would work. I did tell them though if Joey had to be hospitalized again I could not go through the transfers again. Joey had to be hospitalized on April 18th of 1999. That day in the ER I will never forget because i knew I was giving up my child. The drs were not understanding at all . We couldn't get anyone on the phone for consent and they wouldn't care for Joey until they could  and I couldn't sign for anything. It was a terrible night. It started at 11 am and ended at11pm. I came home from the hospital knowing Joey would never return;  a very sad day.

Joey ended up at Deaconis in Buffalo. It's like a nursing home for mostly kids on trachs. About a 18 bed unit. They did the best they could but it could never be like home. Many things had to be done according to their protocol. They insisted on a surgery. We tried so hard to prevent it. It was a laryngeal diversion. They got their way. We were told years ago it was too risky but they did it anyway. I got the county to give a DNR when he entered to hospital. Joey had been through too much. It was not human any more to put him through all of this. Even with the DNR they did the surgery. This was last fall. He didn't seem to do to well after that. I think he gave up. We tried to see him once a month. It was so hard because I just wanted to bring him home. We got up to see him 10 days before he died. He would not open his eyes and seemed more distant than ever. He had a spot on his right eye lid and a small one starting at the hair line above the eye brow. We think now his systems were starting to shut down then. On Jan 17, at 3:35 He passed away. They called us at 4:00 It was a shock. You sometimes think they will have to suffer forever. I did not know what to do they asked us if we would like to come and see him. First I said no then I called them back. We got up there by 7:00. They gave us all the time we needed with him. It was beautiful just to hold him and give us that time to say good bye. It made it much easier for the funeral. Joey died on Monday and we had the funeral Wed. It went so fast. It was hard to say good bye when it was finally over. So many people had come. He touched so many lives. I will send a copy of the eulogy with Joeys picture. The song we had picked out was one of Billy Joel's, (lullaby my angel). It was a song we picked out 5 years ago. We had listened to it on a trip to the hospital with Joey. We were so happy the county would let us make the funeral arrangements and bring him home to where he grew up. We got a family plot in our small town and he will be buried there this spring. We will never forget the many wonderful days we had and the sad ones also. It has made us all so very strong. We would not be the family we are today if it weren't for Joey. We love you Joey forever and someday we will meet again and you can tell all of us what it was like.

Love Jim and Linda Joeys mom and dad!