I have my grandson tonight because his parents are fighting. He has a rare incurable disease affecting the GI tract. He gets chest pain frequently from indigestion and gets a tums or Prevacid. The doctor wants him on it it twice a day. She called me yesterday I think and he was at school the teacher had called and said he wouldn’t eat his lunch. He said he couldn’t. He was hurting so bad. So I took him Prevacid and sat with him until it eased up.
His esophagus closes completely. It’s like MD of the esophagus. I had to stay with them a couple months to care for him while he was on a feeding tube at home. It was awful watching my baby try to sneak to get a bite of food and having to say no. Having to watch him have surgeries, tubes put in etc. It’s awful!
Well he had surgery and has been doing better. Now however he’s been having horrible chest pain. We don’t know if it is indigestion but have to rule that out first. Per doctor who ordered Prevacid twice daily. They haven’t gotten the prescription because they think that could be hard on his liver or bones they read. At least that is what his dad told my husband. I’m not sure. Well he stayed with me last night due to parents fighting etc. she said she didn’t want to take him home to destruction. Who knows. Anyway...last night I fixed dinner the second he got here. Chicken broccoli and rice. He loved it but didn’t eat a lot of chicken. Then a Prevacid. Later he had a bowl of cereal my husband gave him. Not a lot. Well all night once he got in bed he cried, moaned, held his chest just completely freaking out. I gave him a little milk. I tried a little cold water. I propped him up. I rubbed his back. I kept trying everything I know. At 2:00am I gave him another Prevacid. I can’t just load him full of it so I had to wait to give him another. Anyway I watched my beautiful precious grandson cry and when he was half asleep moan loudly holding his chest writhing in pain all night. He had originally dosed off so I had taken my night meds which make me comatose. Yet I had to stay up all night with him. Anxiety helped. I have taken care of millions of patients but let me tell you it does not prepare you for your grandchild in severe pain. I hadn’t realized it had gotten so bad. No one told me. He said it happens every time he goes to bed. He’s not sleeping well anyway and is always up very late. I am just beside myself. My husband his true blood grandpa couldn’t be bothered because he was tired. Then he gets up this morning when my baby seems quieter and I trying to rest my eyes and wakes him up to see how he’s doing and in turn me right beside him then complaining that he was so worried he couldn’t sleep all night. I am positive while I was in here he never got out of the bed and literally told me he was too tired and went back to sleep. Livid! I was supposed to take him to school but I didn’t. He needs rest. I was told he’s punished from the PS4 because he didn’t do well on his spelling. He’s up feeling a lot better and playing his game. We did study spelling. He’s quite good at it. This is grandmas and he doesn’t feel good. I have seen this child go weeks on clear liquid prior to getting a tube. He can eat now which is a blessing in itself after his surgery.
So now I go to grab my coat I keep hanging by the door to take my dog out and it’s gone. That was it. I’m off the edge. Can’t show my baby. I’m keeping him happy. They probably think I didn’t want to take him to school but I was texting his mom last night letting her know what was going on. She knows so if I hear one word I may end up in a mental facility or jail. I just wish since he’s getting some relief my chest would stop hurting. He goes to doctor regularly. They have a plan of action. I just don’t know what to do but I am completely done having to watch this. Somethings got to give. I’ve had to call his doctors before and say if you can’t talk you can listen! When he’s been on clear liquids almost a month and refusing to take what he can have. Aside from disease flare ups typically after procedures or surgeries he is a perfect average boy. Runs, plays etc. I have got to find my way out of this alternate reality and back to the real life!