Angel Joshua's story

November 10, 1999-September 18, 2001

Joshua was born on November 10, 1999. Joshua was my Grandson but I raised him as my son. We were told he would die at birth. Joshua was very pale, actually gray; he didn't move or make any noises and he wouldn't suck on a bottle. They asked if we wanted an NG tube, even though they discouraged it. They said he would never live through the night. Joshua had apnea and would stop breathing for a few seconds. He did this throughout his life whenever he was sick. Joshua's temp was also very low so they brought us heat lamps and a bottle to try. I held Joshua all night waiting for his last breath. To the Doctor's amazement Joshua was still fighting to stay alive in the morning, and was taking some of his bottle. They removed his NG tube and said the color of his skin meant that he was still dying, and again that he wouldn't make it through the night. In the morning when the doctors came in Joshua's condition was the same. They encouraged us to leave him there to die. I told them that if Joshua were to die it would be at home. When I asked his nurse what kind of formula to get, she gave me 5 small cans. She said "I'm not trying to be cruel, but he won't need any more than this." We left the hospital without any information of what to expect if he lived, because they were so sure that he wouldn't. 

We brought Joshua home. I rigged up a heat lamp and bought 2 large heating pads. Joshua's temperature was always low, 92-94. He was wrapped in a heating pad and blankets all the time. I didn't let Joshua lay by himself for over 6 months. I was so afraid he was dying and I didn't want him to die alone. He was taking his bottle a little better, but was vomiting. He still wasn't making any noises or making any movements. I started feeding him with a large eyedropper the first week. I could drip it on his tongue and he would swallow it. It still would take an hour to feed him, but he was getting more and it didn't take much energy for him. I was in a daze most of the time, I was afraid to sleep. We were told his body would just shut down one day. 

Joshua was diagnosed with reflux the beginning of December. He was given Zantac and that gave him some relief. The end of December Joshua started getting worse. He was seeing the doctor once a week then, and every visit I got the same prognosis, that it was just a matter of time. I didn't want to call the doctor because I thought he would just tell me he was dying again. He was also under hospice care and had a very good nurse. She came Monday morning and seeing how sick he had gotten since Friday, she called the doctor and asked him to see Joshua. They told me to bring him in right away and they found that Joshua had a urine infection. Again they discouraged treatment, they didn't think Joshua was strong enough to make it. We had to set guidelines as to how far they would go in treating Joshua. I couldn't watch Joshua suffer with something that was fairly easy to treat as an infections. But I also knew that however long Joshua lived he would not have an easy life. I didn't want to prolong his suffering when it was time for him to go. They admitted him to the hospital. With the IV antibiotics he got better quickly and was discharged December 23, just in time for Christmas. They also diagnosed Joshua with Kidney reflux and put him on daily antibiotics.

The end of January into February Joshua's head was starting to grow rapidly and he was upset all the time. He would go for a week without sleep. Most of the time he showed his pain by erratic breathing, but with all the pressure in his head he started yelling. We got an appointment with a  neurosurgeon. He was very nice. I was always crying through doctor appointments. He said he couldn't do anything to prolong his life, but he would try to make him more comfortable by putting in a shunt. Joshua had his shunt put in when he was 3 months old. The surgery went well except for his low temperature. They wouldn't let me have his heating pad when we were waiting our turn for the operating room. His temperature dropped so low they had to postpone his surgery 2 hours trying to get it up, and brought heat lamps into the operating room. We always kept Joshua propped up as much as possible because of his reflux. The shunt they put in drained too much when he was elevated. His head started caving in and his skull bones overlapped, he also became very irritated again. We had to start lying him down as much as possible. 

Joshua was doing fairly well with his health after the shunt. His temperature was still always low. Joshua was always wrapped in so many blankets, he looked so little when he was unwrapped to change his diaper. He was moving his legs and his arms occasionally. He could now make a noise, kind of  like soft yelling, to let you know when he was upset. He started eating cereal and baby food. He ate really well with a spoon. He also started sucking his bottle a little at 9 months.

When Joshua was 8 months old he started having trouble with his temperature elevating. I took him to the hospital with a temp of 104. The doctors thought his shunt was malfunctioning. Joshua was having trouble breathing and was very agitated. His skin would turn purple wherever you touched him. They tried to give him oxygen but it didn't help. They gave him an MRI, ran a lot of tests and called his doctors. His Pediatrician stayed with us all day in the emergency room waiting for the test results. All the tests came back negative. At this point they determined that his body was shutting down, he was dying and probably wouldn't make it through the night. I took him home to die again.

My boyfriend, Jeff, (known as Joshua's grandpop), lived an hour away from us in the mountains. Moving to his home wasn't an option because nursing care was too hard to get. Joshua loved it there, it was nice and quiet. We spent as much time there as we could. Jeff hadn't gotten really close to Joshua though, he said he couldn't handle him dying. I wouldn't let anyone hold Joshua when we got home from the hospital that day. I wanted to be holding him when he died. He was still very upset and wouldn't take any formula. Jeff took Joshua from me and gave him some Mountain Dew with his eyedropper. He took 4 ounces smacking his lips the whole time. They lay down together on the sofa and fell asleep. That day began their bonding. The following day he was back to normal. Joshua would do things for Jeff he wouldn't do for anyone else, even me. Joshua would get all excited when he heard grandpops voice when he came home from work. He would kick his legs and sometimes move his arms. When I couldn't get him to eat, grandpops could. He took two steps (with support), turned around twice in his exersaucer (by himself), and always went to sleep whenever he held him, only for grandpop. Jeff always told me that Joshua was his hero, and that he couldn't imagine life without him. He said he was so glad he got to know him and that he never knew anyone braver than Joshua. Mountain Dew was always his treat. Joshua loved to be outside in the mountains. We got him a big wagon so he could spend his time outside as much as possible.

The rest of Joshua's life was a constant struggle to keep his temperature somewhere normal. He would go from 90-107 sometimes jumping 8 degrees in 1/2 hour. Joshua had many episodes when his skin and lips would turn purple, his fingernails were always purple. Sometimes he would have so much trouble breathing that I prayed to God to take him, not to let him suffer anymore. but the next day when he was better I was so grateful he was still here. There were many trips to the hospital and the doctors' office. They could never find anything wrong. On September 1st, Joshua was admitted to the hospital with aspiration pneumonia.

On September 17th, I took Joshua to the doctor again for his breathing. At his last regular visit the doctor said we could try a nebulizer the next time he had trouble. After he examined Joshua and showed me how to use the nebulizer, the nurse said she would hold Joshua while I took his things to the car. When I came back, the doctor and the nurse both had tears in their eyes and asked me if I wanted someone to drive home with me. He never said he thought he was dying, I think because he had said it so many times before. He wanted me to call him as soon as I got home. I had worked the night before and hadn't slept. I was so tired it didn't register till I started driving. I called Jeff crying. Joshua had been through this so many times; this time didn't seem any worse.

Joshua stopped breathing that night around 10:30. I called Jeff to come home from work. I prayed to God not to take him yet, to let him be with his grandpop before he died. Joshua started gasping for breath after about 4 minutes. Then I felt so guilty for asking him not to go. By the time Jeff got home he was awake. Joshua's doctor came to the house and stayed till 2 am. His breathing was slow and he wasn't suffering but I could tell that this would be his last day. We spent one last day outside listening to the birds sing. I told him that he could go now, that I was sorry I asked him to stay. At 5:58 pm Joshua's heart stopped beating. We drove Joshua to the funeral home to be cremated. We had a very nice service, but I just wanted it to be over so I could bring Joshua home again. Joshua sits on a table by the window with his Teddy Bear we got him f or Christmas. Joshua was my buddy and I feel like I lost my best friend. He will forever be my precious Joshua.