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!
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Hopeful-Tinkerbell
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Oh my goodness I am so sorry to hear about your grandson suffering as he does. What about you? How did you make it through the night better yet in coping with today? Your anxiety must be off the wall. Taking care of family is so completely different than taking care of patients no related. Emotions are too high. What can we do to help you? Sending a hug for a start xx
I am off the charts stressed! Beyond stressed! Exhausted. Haven’t seen my bed in 48 hours. Just watching him sleep. Praying it lasts. I just got my son to come in and sit with him and keep an eye out so I can sleep a bit. In my bed. He will get me if he wakes up. Just can’t relax enough to sleep. He’s getting an endoscopy next week. No child should ever suffer like he did. I am beyond upset. Prayers for tonight. Hoping my meds will kick in soon. Idk. I have to get up super early to make breakfast and take him to school. Then if all goes well I’ll crash! I kept him home today. He had no sleep and was suffering. So I am super grumpy, emotional etc from lack of sleep on top of it after taking meds to put me to sleep. I’m just glad I can care for him.
Tired. Beyond tired! Stressed! Beyond stressed! He’s here again tonight. Had medicine. Praying he sleeps! It’s after midnight. My son (his uncle) is watching you tube sitting in recliner beside him to keep an eye out so I can rest and he can get me. Didn’t get in my bed last night. I’m just so emotional I can’t sleep. My meds will hopefully kick in soon. I have to get up super early to fix him breakfast and pack his lunch. After I take him to school I’ll probably crash!
Sorry to hear about your grandson, I have a 3 year old. I had the same problem. My grandson has become very clingy with my daughter, his parents have never lived together. When his dad leaves he's very upset. I did have to step in which I normally wouldn't do.
But this is affecting my grandson, GAME ON. He needed a voice from someone. Your grandsons parents and mine are SHELFISH. My grandson also suffers from a chronic illness like yours. What would our kids do without US??? Your a Great Grandmother for being there for him. Maybe you should step in? For me I think it helped?
His dad was just here, she asked for me to watch him while they talked. It went well, they just talked. WHEW. Take care
He’s having an endoscopy next week. He’s here again tonight so I know he’s had meds for 2 days twice daily. They have taken him all across the country for opinions, surgeries etc. I think they are going to give him the medicine now. Until endoscopy then we’ll see. They also have a wedge under his mattress and only feed him all natural organic food. No sugar. They are adjusting his diet. Dinner 3 hours before bed. He’s here tonight again. I’m praying he sleeps! I got him healthy food and snacks. Hoping he can go to school tomorrow. I love having him but he has missed a lot. They hate medicine because they are worried about the long term but no child should ever suffer like he did last night! I gave him meds though. Didn’t help. I’m stressed beyond stress!
I know how you feel, my grandson has had several trips to the ER. They said he has allergies, but they don't know to what?
This frustrates me beyond belief, my youngest daughter has been going to doctors since she was young. They said she has had every test done and many diagnosis IBS to MS. So my nerves have taken a beating. We had good insurance, nit good doctors.
Unfortunately she's has her own insurance now which she's paying more out of pocket for her on going health issues. I wish the best to your family
I am very sorry to hear about your grandson's sickness. Have you tried to get a second opinion say at Mayo, Hopkins or Cleveland Clinic? Is it a possibility?
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