Not A good Day

O my god where do I start.. I don’t even know. I am so exhausted physically mentally emotionally you name it. I havent gotten any sleep at all in the last couple of days last night was really bad. And there is just no on top be upset with. I mean if i was just doing the regular staying up and trying to get the things done i need to get done i could be mad at myself but not the case. Lucian is so sick. Travis and I were up all night last night after I got home from work with Lucian because he is not feeling well. He cant breathe well out of his nose,he is coughing his color is not good and he is not himself at all. I dono what is going on and I dont really think anyone else knows for sure either. Either way it is not good. Our surgeon is out of town until Thursday, His partner is here but you see we let no one touch Lucian but doctor rogers, no one else knows lucians pas and there is to much to mixed up or easily confused if you have never sen him before. But we have ran into a problem.You see it is clear Lucian has upper respiratory issues just developed this week not good not good at all. The problem is distinguishing it from needing dilated. He is doing all the signs and symptoms of needing dilated but if he is sick as well which he is,then they cant dilate because they cant sedate him. To many problems in doing it Lucian desats and doesn’t breathe well, plus he is having a hard enough time breathing as it is. The tip of his nose is bright red he is coughing his head off and is cranky as hell. I had to work at noon today and talked to the pediatrician office twice before hand an the surgeons office as well and they wanted him in today immediately. I told them I was the only one with the car and one of us had to be at home to get Lexi and Jordan off the bus that i would do what i can to get him in as fast as i can. By this point driving to work i am a wreck how am i going to pull all of this off i ask. So I pulled in thanking my manager would be there but he was at the bank so i had to wait for him to get in the mean time i was explaining what was going on to one of the other girls that works there. I told her i wanted to see if someone could come in early and cover part of my sift so that I could leave and get Lucian into the hospital so they could evaluate him and tell em what I needed to do. I am so worried, I am worried sick. I mean it is just a bad situation. They want me to wait it out through the night and see how he does and I have to call first thing int he morning lucky for me I am off tomorrow. He is doing things that make me think he is strictured down, but since he is sick to they cant really do anything so I am stuck watching my baby be sick from a cold and on top of all that struggle to pass his own secretions let alone all the mucus he has in his lungs from all of this other crap. We have started neb treatments and I have started respiratory therapy on him to try and keep his lungs as clear as possible. They are telling me to take it one day at a time easy for them to say, there not me an it is not there child they have to watch suffer and feel like he is drowning on his own secretions. He is gulping and trying so hard to pass it all. I am keeping him elevated as much as possible for reflux issues and for the fear of aspiration. For someone who listens to Lucian it can be easily mistaken that he could possibly have aspiration pneumonia or atalectisis of the lungs but I really don’t think the atalectisis is the current issue . I think he current  issue is getting him over whatever he has and watching him hour by hour to see how he manages his secretions and gets them down. The problem is while he is sick they cant dilate him because of the anaesthesia. Lucian can desat and turn blue and it can be an all around bad situation period and we can not risk it no one will but the out come can be horrific as well. Aspiration Pneumonia can kill someone. He had it so bad a few months abck he lost massive amounts of weight wouldnt eat and alot of other things. I dont want it to get tot hat poin I cant handle that again.  I am glad my work was understanding to day I was so worried they were going to be so mad. It is hard for me to explain my situation because alot of people just dont understand it. It is so nice talking to another parent of an esophageal atresia/tef tracheomalacia bronchomalacia, and laryngomalacia, and down syndroem that can relate to what I am going through although I really havent foun anyone that has a child with a gap as long as Lucians. His gap was 7cm long.  I just wish I could go to bed and sleep it all off and it would all be better tomorrow. I mean I think back and at one point in time Lucians esophagus was barly big enogh to pass a piece of sewing thread through ti let alone spit,so I knw he will make it  through all of this he is so tuff he has to.  I love my kids more than anythign in the world and if i could give him what he needed to make him have a lifetime of happiness and healthines then I would tell them to take it all from me. I would give my life just for my sn to be happy and healthy and not to have to go through any more pain. I hate it. It is so depressing, all I have been able to do is cry or feel like I am goign to cry. I just want for things to get better.  Having a baby and a surgeon that tells you that your child has one of the most difficult top 10 cases of  esophageal atresia in the world is amazing that he is still here and fighting it through it day by day, Looking at my son though other than if you could not see his g tube you would never know anythig was wrong with him other than maybe the way he sounds because he always sounds bad, but when he is sick like he is now he sounds horrible and I mean horrible. I wish I would ahve done a few things differently, I had been washing my hands and using sanatizer and changing my clothes as soon as i got home i would touch anything until I did and I stopped changing my clothes right when I got home, no time everyone wants me in a different direction for something so i change my clothes after my shower at 1 or 2 am when ever it is. Our stupid dryer is still broke and i cant find the electrical tester thing i need to see if it is a fuse or not. I am tired of hanging my clothes actually i dont so much mind me it is more so lucian an the kids i worry about. Lucian has such sensitive skin. He breaks out so easy.  So I dono I guess you could say I have alot of things to watch closely. I dono how I am going to manage all of this I guess where there is a will there is a way. That is the saying i think. I am just sitting here litterally wondering how long a person can honestly go on with 3 hours of sleep a night maybe four if i get lucky but not the last two nights there has been no sleep i think i might have gotten about 4 hours int he last 2 days maybe 5. What can you do when you have a sick baby with the issues that he has. Drink more coffee I guess. It takes both Travis and I to manage everything especially when things are like this. See and this is a whole separate issue from what they are wanting to do in May. There is just really alot to comprehend. O and my school books didn’t come today so maybe they will be here tomorrow.  I really want to get it going. O my god Lucian is hacking his head off but what am I to do you cant give him cough medicine. And is he hacking because of the cold or both he cold and the strictures. It would also make since that I was thinking if he has stuff draining down the back of his throat and it will be thick then it is going to have a hard time getting it down then he is going to cough to try and clear it out. So I dono. I hope tonight goes well it is going to be along night i hope it goes by fast I hope i get some sleep and if that is the case then it goes by slow but I really dont for see that happening. Nothing has gone my way not lately. Lexi is sick as well and s far Jordan has had no sick signs thank god. I have to call the pediatration first thing int he morning as well as the surgeon. H e is making god offle noises when he trys to swallow, so I am just going to have to watch this liek a hawk. I want to thank everyone who is thinking of my family and I. It means alot it really does. You really shouldn want to rush your baby to grow up but i would do anythign if lucian could talk to me to tell me what is going on what he is feeling. But at the same time it makes me cry because he is my baby and I cherrish the moments while he is so small because they dont last long at all.  This girl I work with last night also found a lottery ticket that someone bought an left  it was jsut one for a free ticket but she wanted me to get another ticket with that one and i havent gotten to do it yet. Hell I knw sooner got to work and broke down in tears wondering how I am going to get through all of this with everythign that is going on and everythign that needs to be fixed. I just pray Lucians esophagus will magically stay open.