[Justhere]

Just had to write. My little sweetie passed away last night. I know he is better off but I will miss him so much. I've taken care of him since June of 2000. I guess I feel guilty in some way, I left full time taking care of him 2 years ago because I wanted to go back to school to get my RN and went to the hospital to work pull (so I could get the same amt of pay for working 3 days instead of 10). I would go take care of him a couple of times a month during the first year when I was taking my prereq and was canceled at the hospital. Then Feb of 2005 I had to have bilat hernia repair, so I would only work every now and then at nights so I wouldn't have to pick him up, just turn him (weighed 80 lbs.) When I left full time he was in great shape had not been in the hospital in over a year so I felt comfortable leaving. That first year he was admitted 3 times for pneumonia, nurses were coming and going. This last year he got a regular daytime nurse and he hasn't had to go into the hospital until Thursday. When I finished school I had every intention in going back to work for him, but I have pulled the hernia's out again the doctor said that it was from lifting and pulling on patients and that if I kept on I would just continuelly have to have them operated on. So a opening in the nursery came open and I took it. It was the hardest thing to tell his mother that I was not coming back. But I kept in contact with them. I was working Thursday night and heard the other nurse talking that a kid was med flighted out to another hospital from the ER. When they said it was a 10 year old on a vent my heart dropped. I called his house and found out it was him. I feel good that I went to see him in the hospital PICU on Friday. His mom said that I was the only one that come, she cried on my shoulder and me hers. From what she told me and what I saw I believe he was septic. They were having a hard time keeping his blood pressure up. I stayed for a hour and let his mom talk, she was fighting with herself on the decision of letting him go or not. So we talked about that. I left at 1pm so that his dad could come back, they only allow 2 vistors at a time. I also knew it was bad because they were allowing them to stay back there all they wanted instead of the set visiting hours. At 7 pm his mom called to tell me he had passed, that when his dad came back after I left they told the docs to let him go.
I know he is in a better place now where he can run, jump and play, but I am going to miss his smile and how he like to pick at me and visa versa. After taking care of him that long it is like losing one of my own kids. I still haven't told my kids yet. They were attached to him to. During the summers I would take them over to his house to let them play while I worked, he loved it. The first time I took my daughter and thought this isn't going to work (she was 3 and he was 6) we were sitting on the couch and she would put her hand on my leg and then he would put his hand on my other leg, well she would push it off and say "My Mama", he would then put it back on my leg and say "My Penny" well it turned out to be a game with both of them grinning from ear to ear. I think it went on for about a hour. After that she always asked when she would get to go back to see him.

[EricJRN]

I'm so sorry for the loss you've experienced, Penny. I can tell that this little guy became very special to you over the last several years.

[Justhere]

Thanks Eric, he was a special little guy

[dlsgroovymom]

[Justhere]

thanks dlsgroovymom,
Found out the arrangements for his funeral today. Thought I was doing ok until I went to order an arrangement to send to the funeral home, and I began crying over the phone. The lady was wonderful on the other end, very patient. I finially got my composure, then started again when I asked if she had anything Spongebob to send with the arrangement and she said she had a spongebob beanie baby, Spongebob was his favorite cartoon character.

[janfrn]

Penny, I'm so sorry for your loss. You invested a lot of time and a lot of yourself in that little boy and your grief is only natural. As the parent of someone with many special needs, I want to assure you that his parents never once resented your choice to work with babies to protect your own health. We all know that life is what happens when we're making other plans. (Although I bet they missed you like heck and compared everyone who came after to you!) And I can also say that they deeply appreciated the fact that you cared enough to visit PICU and be there for them when they needed you. You were able to say goodbye to him and they could see that his life had meaning. Cry when you want to. You have the right.

[traumaRUs]

Penny - what a wonderful tribute to a wonderful young man who's life you impacted. That is what nursing is all about. You are wonderful.

[Justhere]

Thanks to everyone that replied. His funeral was wonderful. He looked so good in his suit. He loved Sponge Bob and in almost every flower sent you could find a Sponge Bob somewhere in them. Even the vest he had on with his suit, you couldn't tell at first glance but when my daughter wanted to view him again at the viewing we noticed Sponge Bobs leg sticking out on one side so we took a peek and it had Sponge Bob and Patrick all over it. His funeral was packed with family, nurses that either were taking care of him or from the past, school teachers and classmates. He had one little girl that just adored him, and would get her mother to buy him gifts, her mother said that everytime they passed something Sponge Bob she would go into fits that they would have to buy it for him. One Christmas she bought him a sponge bob throw and had his name embroider on it. His family and I would tease him that he had a girl friend, he would smile and kind of duck his head. She was at the viewing and you could see the tears in her eyes but she was trying her best not to cry.
The heartache is getting better, and I wear my sponge bob scrubs often and think about him. But I truely believe that taking care of a child like him is truely special and a life changing experience. To see a child that the doctors say will never do anything, surprise them at every visit on what he was doing.

[Epona]

This thread brought tears to my eyes. You are an angel Penny. Thanks for all you do.

Epona

[Justhere]

His birthday was the 27 of September. Everytime we got an admission that night in the nursery, I would just think you have a very special birthday. Saw his mom and dad today. They are doing well. His mom was talking about trying to get a job because she has nothing to do around the house anymore. Three of her other kids in the last 2 years have left home, leaving only one child there with her now. Before she could not take a full time job because if one of her nurses didn't show for work or if he was sick she would have to call in. So she always cleaned houses for extra money. Now they are also trying to sell his full size van with wheelchair lift in it, that they just purchased 6 months ago, used. But those things even used are so expensive. She says she has had alot of calls on it but they don't want to pay what she is asking for it because it is a 99 year model, but only has 52,000 miles on it and she is only asking $13,000: $500 less then what she paid for it 6 months ago when it had 48,000 miles on it. And to me it's not a bad price when you look at what they really are going for which is around 25,000 if not higher. I told her not to back off her price the right person will come along and get that van.