A tube in his nose!

Jonathan is doing good, we are at home and he has increased his intake of milk and hopefully we see a good weight gain tomorrow. Jonathan is such a trooper he went through his MRI and the 3 hours it took, I was scared to death crying because Jonathan was intubated and they told me he could end up in the icu because the transition of taking the tube out and him not tolerating it. Well happy to report they took it out and he didn't even need support Justin and I went and seen him and he was smiling how happy that made me! The doctor had a plan of Jonathan in taking 100ccs in 3 hours to give him a total of 800ccs in 24 hours sound great right? I knew that wouldn't work Jonathan is a grazer and he takes at max 60ccs at once but the doctor or I should say resident said in order for us to leave he had to do this I told her then she needs to be there to watch him, she went on to explain that she was very busy with a lot more patients I said well it looks like we are going to be here for awhile so we would just wait and in the meantime I will feed him his bottle! She agreed to watch and came back about 2hours later and the nurse put in 60ccs then another 40 through an ng tube (a tube through his nose that can be hooked up to a bolus and then you put the milk in the bolus and it travels down to his stomach) around 70ccs Jonathan threw up everywhere all 70ccs the doc said well I guess that won't work so after going back in forth with her about changing his feeding arrangements she agreed that I would feed him as much as I could by bottle then bolus the rest hoping to get 100ccs every three hours. He did o.k we only got 700(23 ozs) but a huge improvement when he was getting only 510ccs (17ozs) at home. The next day she came in I told her we were ready to go home with the tube until he could intake the amount he needed to grow. She then said "well he needs to intake 800 or I can't let you go" To say I had the last word is an understatement we DID go home that day!! I am really finding out you are your child's advocate 100% and you have to stand strong or doctors, therapists anybody that is involved with your child will try to persuade you to think there right and your wrong. Jonathan is doing good tonight he got 750 ccs and yesterday he got 800 so he is doing good in that department but he is really cranky now I mean crying nonstop for 4 to 5 hours a day and it sure is taking a toll on me. Justin and I went to a hotel last night and thought Jonathan would like the pool and he did but from 11pm till 7am he cried and cried and cried some more we all got about 2 hours sleep. We tried to let him cry it out but after about a half hour he threw up and only I can console him. He likes to be held and walk around if I sit he wails until he gets his way he even turns blue what the heck happened to my sweet little angel! I can say my mom and dad have helped out a lot because there are nights where I am crying right along with Jonathan I don't know what to do I am so lost on why he is doing this he always has been a moody boy but now he is just plain high maintenance I thought boys were supposed to be easy to raise! I know he will out grow this but I sure hope its soon! The biggest news is that the ct scan, mri and almost all other test have come back normal we are waiting for a creatine test to come back and if its abnormal it will explain the failure to thrive if its normal we are back to square one on why he is not gaining weight, but hopefully tomorrow he has gained something if not we have real problem because he is eating enough calories and he surely isn't running or doing any other exercises except crying (which he does burn calories) that we know of, so then we will be talking about a malabsorption problem in which he is not absorbing the proteins, fat and his acids in his belly are not doing what there supposed to and he is just peeing and pooping all his calories out. They also did a chromosome test to see if genetically something is wrong Justin and I both believe that will be normal since there is nothing that runs in our families, the geneticist did say however that Justin and I could have some genes that were passed on to him and there not be one person in our family with it, I don't know and we won't know for another 2 weeks please just keep us in your prayers that everything just starts falling into place and that his weight is better tomorrow like 13lbs something?