Day Fourteen

The day started off good but got a little off course today. I asked yesterday that they change the food they were giving Daniel during meals. They had been giving him strictly peaches because he likes them. However, he is starting to take about 3 oz each and every meal and with 4 meals per day he would be getting about 12 oz of peaches. There is nothing wrong with peaches for a normal digestive system but Daniel doesn't have a normal digestive system and peaches in big amounts can cause some unwanted side effects. So, we agreed to change his morning 2 meals to bananas and his 2 afternoon meals to sweet potatoes. Who would have thought that this would be a problem, right? Well, Daniel went in for his 1st feed and did great with bananas and drinking his juice with the special squeeze cup. Around the last 30 seconds of the meal, that I was watching on TV, I noticed that he was pulling on his g-tube. I casually mentioned to the person who watches the meal with me that I was going to have to look at it because Daniel never messes with his tube. It's just a part of his body that he has always had and he just never messes with it. When they bring Daniel out from the feeding room he is still pulling on the tube and starts to cry. I ask him if he needs to go potty and he says yes. I get his potty seat and off to the bathroom we go. He is crying more and more and I feel that maybe he has some air in his belly and I need to "vent" the g-tube. I ask the nurse to stay with him and I go get the diaper bag to get the syringe. By the time I get back he is crying harder and really pulling at his tube. I then notice that his ears are getting really red. I told the nurse that I need her to go check to see if they gave him milk - yes MILK! For those of you that don't know, Daniel is very allergic to milk and eggs. Off she goes and comes back to tell me that they tasted the juice and it is definitely NOT milk and proceed to ask me if he's allergic to bananas. I tell her no he's had them many times. At this point, Daniel is itching all over his body and is screaming in pain from the itching and hives are popping up everywhere. His ears are swelling too. I tell her to go get the feeding therapist. Cynthia comes in and I tell her that he's having a reaction to milk and they had to have given him some. She goes back out and comes back soon telling me that she talked with the person who prepares the food and that this person did use milk to thin out the bananas when she was pureeing them. At this point I can't believe what I am hearing. They are all very aware of Daniel's allergies but obviously the person that prepared the food was not diligent in reading all the necessary warnings on his chart. Daniel is screaming, itching, crying and I am mad as hell. The doc comes in and they give him a teaspoon of Benedryl. This doesn't do anything so they have to give him 2 more teaspoons. Daniel continues for about another 1/2 hour to itch like crazy and cry but finally the Benedryl kicks in and he calms down. Needless to say, the Benedryl made him extremely tired. Off to sleep he went for a long slumber. He awoke later no worse for the wear other than scratches from his finger nails on his chest, belly and legs from itching himself so bad. While mommy was holding the sleeping prince, the hospital director came to talk with me about what happened. I told her that now was not the time to talk with me because I was extremely pissed off and I'm pretty sure if she stayed to talk with me I would say some things she didn't want to hear. She took my word for it and told me to call for her when I felt ready to talk.

(Note, I'm not sure I should be starting a new paragraph here but to make it easier to read, I will).

Later, much later, I called everyone together and expressed my displeasure (without using the cuss words that I so badly wanted to use) at the situation. I explained that everyone was well aware of Daniel's allergies when we agreed to come and they assured me in the beginning that they could treat him and feed him without using milk or eggs. They explained what had happened and they explained to me the extra precautions that will be taken from here on out. They told me how extremely sorry they were that this happened and that they will guarantee me it will not happen again! I explained (somewhat nicely) that when I send Daniel back in that room, I want him to be safe. I expect him to be safe! I think they were deeply ashamed of themselves for this breach in my trust of their care for Daniel. With that, I told them I was done with talking about it and I wanted to get back to work. Daniel will be fine but let me tell you, Eric and I always wondered what would happen if Daniel got a drink of milk. Well, I now know and it is not pretty! The amount of milk they used to thin down the bananas was very small. I can't even imagine what would happen if he took a big drink. Mommy made a stop at CVS on the way home and now has a bottle of Benedryl in her purse in case anything like this would happen again, anywhere. I never want to see that happen to him again.

Off of that subject, the feedings today were absolutely fabulous. He is doing well and we will continue down this path for the rest of the week working on getting control of his tongue and eating/drinking together. They are very happy with where he is and I'm hoping that the rest of the week goes well.

Mommy is doing okay. The tension ran high today and I could have used a good cold beer when I got back to the hotel but I don't have any and they don't have a bar in this hotel so I settled for a diet mountain dew! If you are sending a care package to us, please include some liquor for mommy, okay?

Well, I gotta get off here. Will update tomorrow night. Hopefully, there is no drama and it will be a good day for Daniel.

-Angela-