May 27, 2008 17:38 If your child is being transferred to a hospital for an e.a problem i would stongly encourage you to do all the research you can before you sign the papers to go. Check the physicians out in the areas your child is going to need special attention . And check out the hospital its self as well. We were not so fortunate. LUCIAN was born at st johns in Springfield how ever after his repair the doctors here said they could do no more for him and wanted to send us to Chicago for the tests that he needed and even before that was mentioned we wanted to transfer to Minnesota because that is were most all of the ea cases are delt with after putting up a good fight on that one we didn’t win we ended up going to Chicago. o my god it was a nightmare. These people are such incompetent idiots they just don’t get it. If it wouldn’t have been for us our son either wouldn be here or would still be in the hospital. Things there are so messed up there so out dated and the people are so careless and rude. In a nicu there is so post to be a nurse in the room at all times and there were numerous accounts of Lucian being left in his room alone along with another baby as well. Lucian would be desating and choking and we would have to suction him out. On one occasion his nurse walked out and he started turning blue travis grabbed the suction and i went for the nurse and she came back in all nonchalantly o he was just desating but you did the right thing she said. I straight wanted to smack her. That happened so many times.Other times we had two nurses and they both left went to lunch at the same time and didn’t tell anyone and lucian was turning blue all while the nurse practitioner was standing there o isn’t he doin great i was like no he is turning blue so instead of her doing it she went to find someone else to handle it i mean suction him out so we ended up doing it our self’s again if we would have not known what the problem was or what we were doing we would have been in big trouble. All the while these idiots think it is ok. I eventually ended up going to the nurse manager. i think at first they were intimadating but then after awhile you learn to just not give a shit and do it your self. You learn that in all your spare time which there is none you do research and more research and it never stops you always want to learn more about what your child has and how to help them. Because believe me there are things that you can find that the doctors wont tell you. Like my sons g tube for the longest time thoughs morons told me that it was ok to smell and to be red 3 inches out all the way around it and for it to have black under the button. They told me that some parents take to granulated tissue differently than others which is funny because granulated tissue is pink not black. Thank god we were getting transferred back to our home hospital in Springfield to the picu this time around one more day in that hospital i would have gone to jail. There were so many things they were wrong on like they only gave him a 20% chance to make it off the ventilator and he made it fine, a 20% he straight showed them whats up. Our son is such a little fighter, i truly think he has endured more in his 5 months of life than i have in most of my life i will for sure give him that. There was another time right before he was gonna be transferred back that he tested positive for a flu virus so they put him in a room all by him self and i guess your so post to gown up funny thing is the nurse he had said some parents refuse to wear them so we refused. Thats my baby how are you gonna tell me i have to gown mask and glove up im not going into any other contact with other babies. Wouldn’t it make more since to gown up all the time so that it would prevent sickness all together why weight til there sick in isolation. deedeee.. Anyways so i half way one that argument i told them i would wear there gown but i was not wearing there gloves or hat and i didnt. It was funny they called infectious diseases down and everything. So they told me as long as he tested positive for the flu he could not be transferred so they were gonna wait like 5 days and i told them i wanted it done the next day because we wanted out of there. They argued with me that he had to have three negative tests in a row so i wanted them to do them Fri sat sun so he could leave monday. I knew he was not sick still it was a bunch of b.s. So then they changed it and said you have to wait 5 days in between each one so we were really mad then. And then they just changed it to one test we got it and we were on our way back to Springfield. When the sent him back and he arrived st johns was checking him out and they un did the pic line in his arm he had red streaks going up and down his arm and the pic line was hanging almost all the way out and it hadn’t been checked in along time. The nurse called in some one else and told us to take pictures that this was very serious that if it would have went a few days longer he could of gotten blood poisoning and it could of killed our son. This is after i threw a fit to have them take it out anyways because they were not using it at all they just kept flushing it with a blood thinner called heparin and thats not good they could of just dripped one cc an hour of water through it and it would have kept the line open. There so dumb up there and there lack of communication sucked. I would not recommend my dog to that hospital and as a matter of fact the sent Lucian a get well soon card that im gonna mail back with the pictures of his arm with the pic line and also his g tube then and now just for my satisfaction. I am gonna plan a trip up there to have words with them people i am still not done all of there problems with our son was pure laziness and carelessness.

I could tell you of many experiences but this is just one of them. This was a typical day at Childrens Memorial In Chicago.
This is just a little bit of one of the days that we went through at childrens memorial in Chicago it was one bad day let me tell you so it went some thin like this…..So we went round two with these people today. I swear my stress level is so freakin high it’s not funny. They had a nurse practitioner come in who just so happen ed to ask me if we had any questions so of coarse i said i have a whole book i just dono if you are the person to answer them. So she asked what they were and i told her the things we were upset about if you want me to prioritize them then it would first be having a nurse in our sons room at all times, second would be his g tube the third would be lack of communication, and the fourth was when can we go home? But not exactly in thoughs order. So i gave her a piece of my mind and then she left, then we met with a social worker after all that then she ended up making me cry. Today was just a mess i swear these people dont understand what it is like to live out of a hospital to have to deal with alone what we are dealing with with him and now we have lack of communication, that dont make it any better at all. That makes it so much worse so again tomorrow i have a meeting with the nurse manager so that i can adress these issues because they have got to get better. This place is not right it is so messed up i thought springfield was bad at least they listened when you told them something you know. They still insist that it is normal for his g tube to smell the way it is and i really disagree if that keeps up were gonna end up with another infection. He is some where around 11 pounds i would n know surprise surprise b/c they dont have a chart that goes that high so she told me some where around 11 pounds bitch thought i was stupid i said i know you have to have what it is in kilo’s its not like the scale just stops at 10lbs 15oz thats just their chart. All of what i see is pure laziness because people don’t wanna help out as much as they should. I beg you as a parent of a child that spent the the biggest majority of his life int he hospital, you have to speak for your baby know one else is going to and if you dont then, something really bad could happen. I cant even tell you how many times these people had his charts all mixed up, and we thought Springfield was bad, Springfield is a palace compared to that place. And the sad thing that is strictly a transferring hospital they have no mother baby unit there, god bless all the litle ones that are there with no parents that dont keep tract of everything, because chances are they will run into a huge problem well atleast if your child has e.a. anyways. If we wouldn have wrote everything down we would have never have been able to keep things straight. Our son is goning to have books and books of information on him when he gets older and i think he will appreciate it very much. Its just sad some parents out there we witnessed many who the doctors will tell them something about there child and they dont even question it. You cant do that, question everything. EVERYTHING.

So this is what Lucians g tube looked like in chicago it seemed to be the best they thought it could get which i new was not true. For one there is no reason for it to even look like that. It clearly states every where that your so post to keep that area cleaned with soapy water and then dried and covered with fresh DRY gauze not the case with them. It got to a point where it was black around it and they kept try in to tell us it was granualted tissue, funny thing is granulated tissue is bright pink, we had seen it before. Needless to say I through a fit all the way up until we left because that had been a never ending battle for quite a while. Once we got him back to springfield where we had people that would listen to us it started to look much better.

Lucian

Wednesday, April 09, 2008

This is what are sons central pic line looked like when we got transferred back to Springfield from Chicago. We continuously asked them about it and we were told not to touch it and and the nurse back here said one or two more days like that it could of given him blood poisoning and killed him because that type of line goes straight to the heart. All of the line that is hanging out is so post to be inside him. It’s just pure carelessness. Might i add it was covered with just an ace bandage wrap and this is how it was when ST. Johns unwrapped it.

Lucian

Thursday, April 10, 2008

Esophageal atresia, with or without tracheoesophageal fistula, occurs in 1 out of 4500 live births in the United States. The most common anatomic variant of esophageal atresia is the presence of a tracheal fistula to the distant remnant of the esophagus. This type of tracheoesophageal fistula occurs in 85% of all infants born with esophageal atresia. Other organ systems can also be affected in up to 20% of infants born with esophageal atresia. The spectrum of associated anomalies is frequently referred to by the acronym VACTERL, which includes vertebral, anorectal, cardiac, tracheoesophageal, renal, and limb abnormalities.

Diagnosis of esophageal atresia, with or without tracheoesophageal fistula, is usually made after birth with symptoms of respiratory distress, excess oral secretions, choking on attempted feeds and an inability to pass an oro- or naso-gastric tube beyond 12 cm. The ultimate goal of the surgical correction of esophageal atresia with distal tracheoesophageal fistula is to restore esophageal continuity and ligate the tracheal fistula. The traditional operation occurs via a right thoracotomy (large rib- and muscle-splitting incision of the posterior and lateral chest wall) with subsequent division/ligation of the tracheoesophageal fistula and anastomosis of the proximal and distal esophageal segments. The thoracoscopic repair is different from the traditional operation only in that the chest is accessed through 3 incisions, 5 mm each, in the right chest.[5, 6] Early complications include esophageal anastomotic leak, recurrent tracheoesophageal fistula, gastroesophageal reflux, tracheomalacia and esophageal anastomotic stricture formation. Late complications include progressive gastroesophageal reflux, recurrent esophageal stricture formation and recurrent tracheoesophageal fistula.

Holcomb et al.[7] reviewed the combined results of 104 neonates undergoing primary thoracoscopic repair of esophageal atresia with tracheoesophageal fistula at 6 different institutions worldwide. The mean weight at operation was 2.6 kg (+/-0.5) with a mean operative time of 129.9 minutes (+/-55.5). Outcomes were compared to historical controls in infants undergoing traditional thoracotomy repair. The esophageal anastomotic leak rate was 7.6% (compared to 10%-21% historical) with a stricture rate of 3.8% (compared to 18% historical). Recurrent tracheoesophageal fistulization rate is widely reported to be between 2.2% to 12% in various historical reports. In this series, the recurrent fistulization rate was 1.9%. Therefore, thoracoscopic repair of esophageal atresia with distal tracheoesophageal fistula is feasible and can be done with equivalent surgical outcomes to historical controls of the traditional thoracotomy repair. However, the retrospective nature of this large series does not allow for direct comparison of results between thoracoscopic and traditional thoracotomy approaches. Without these direct data, comparative outcomes for length of stay and postoperative pain are not yet available.

, occurs in 1 out of 4500 live births in the United States. The most common anatomic variant of esophageal atresia is the presence of a tracheal fistula to the distant remnant of the esophagus. This type of tracheoesophageal fistula occurs in 85% of all infants born with esophageal atresia. Other organ systems can also be affected in up to 20% of infants born with esophageal atresia. The spectrum of associated anomalies is frequently referred to by the acronym VACTERL, which includes vertebral, anorectal, cardiac, tracheoesophageal, renal, and limb abnormalities.

Diagnosis of esophageal atresia, with or without tracheoesophageal fistula, is usually made after birth with symptoms of respiratory distress, excess oral secretions, choking on attempted feeds and an inability to pass an oro- or naso-gastric tube beyond 12 cm. The ultimate goal of the surgical correction of esophageal atresia with distal tracheoesophageal fistula is to restore esophageal continuity and ligate the tracheal fistula. The traditional operation occurs via a right thoracotomy (large rib- and muscle-splitting incision of the posterior and lateral chest wall) with subsequent division/ligation of the tracheoesophageal fistula and anastomosis of the proximal and distal esophageal segments. The thoracoscopic repair is different from the traditional operation only in that the chest is accessed through 3 incisions, 5 mm each, in the right chest.[5, 6] Early complications include esophageal anastomotic leak, recurrent tracheoesophageal fistula, gastroesophageal reflux, tracheomalacia and esophageal anastomotic stricture formation. Late complications include progressive gastroesophageal reflux, recurrent esophageal stricture formation and recurrent tracheoesophageal fistula.

Holcomb et al.[7] reviewed the combined results of 104 neonates undergoing primary thoracoscopic repair of esophageal atresia with tracheoesophageal fistula at 6 different institutions worldwide. The mean weight at operation was 2.6 kg (+/-0.5) with a mean operative time of 129.9 minutes (+/-55.5). Outcomes were compared to historical controls in infants undergoing traditional thoracotomy repair. The esophageal anastomotic leak rate was 7.6% (compared to 10%-21% historical) with a stricture rate of 3.8% (compared to 18% historical). Recurrent tracheoesophageal fistulization rate is widely reported to be between 2.2% to 12% in various historical reports. In this series, the recurrent fistulization rate was 1.9%. Therefore, thoracoscopic repair of esophageal atresia with distal tracheoesophageal fistula is feasible and can be done with equivalent surgical outcomes to historical controls of the traditional thoracotomy repair. However, the retrospective nature of this large series does not allow for direct comparison of results between thoracoscopic and traditional thoracotomy approaches. Without these direct data, comparative outcomes for length of stay and postoperative pain are not yet available.