I am going to for go my usual blog and tell you all the story if Isaac. Isaac is not his real name because of HIPAA law I am barred from telling you his real name. However I can tell you his story.
Isaac is a one year old little boy with a twin brother. Isaac's brother is somewhat healthy, but Isaac is very sick. He was born with a condition known as "short gut syndrome". For those who do not know what it is let me explain: Short Bowel Syndrome is the result of an absorptive abnormality in the gut do to lack of surface area. It is usually the result of re-sectioning of the small intestine for varies reasons. Because of this lack of surface area the child is not able to absorb the nutrients he needs to remain healthy. Isaac is also...for various other reasons...in end stage liver failure. He is on G-tube feeds and has been in and out of the hospital his whole life. I spent Day 90 with him in the PICU. He had been in before earlier in the semester and I had talked with the student nurse taking care of him and had spent a little time with him, but quickly forgot him after. I will not forget him now.
On the day I took care of him, he had been readmitted to the hospital for an infection and it turned out he also had pneumonia. The child cannot breath as it is...his belly is so distended from the liver failure, and he is so tiny from being sick, that he looks like a bright yellow six month old with a huge bowling ball for a stomach. All of the nurses in the Unit know Isaac...all of them love him. He never cries...except when he is getting an IV, he's alert and playful when he is "feeling well". He is a very sweet child. The big news for Isaac that day was whether he had made it on to the liver transplant list at UCLA Children's. The answer was: NO. He had been rejected from the list because he had one day of good GI labs and he was receiving G-tube feedings well. He was disqualified as a candidate. All of us looked at the poor child and wondered if the brilliant minds that made this decision had actually went in a looked at the child. Clearly, he needs a liver transplant. The doctors had felt since he was so young, his liver might spontaneously regenerate. The liver is the only organ that can do that. However, this child is so sick and has been sick for so long, his body is focused on fighting off what comes at him next than trying to heal itself.
The news of Isaac's rejection disappointed all the nurses that knew him. Some claimed the reason he was rejected was the family's lack of money...which in part is probably true. His doctor was not one for giving hope. The first words out of his mouth when he walked into Isaac's room with me and the nurse I was following were "This child is going to die." I was taken aback. I know the parents weren't there and Isaac probably couldn't understand what he was saying, but the fact that he said it so bluntly and so absolutely, made me want to smack the doctor across the face. You don't say things like that in front of a patient! No matter what! I could see the nurse holding her breath, fighting to keep her tongue in check. The doctor went on: "Yeah, there is no hope for you. They are not going to to get him a liver. But we will try again if the family wants too. They haven't expressed any desire to try again." At that point I asked where the family was and why wouldn't they want to try again? I was told the family had pretty much given up hope and focused on the healthy twin and the first try at the transplant list had been an inconvenience for them. I just about threw up all over the crib.
Word about Isaac's rejection and the doctor's "diagnosis" spread around the unit quickly. The whole day nurses were in and out of his room. All came in with smiles and all left in tears. I could not cry and neither could the primary nurse. We knew if we shed one tear...we would not be able to do our job.
At the end of the day my mind was decided. I will not work in pediatrics. The next week Isaac was still there. He was happier and looking better, but still very sick. It was his birthday. All the nurses had given him toys so he didn't pull on his G-tube and so he had something other than white walls and nurses to look at. I got him to smile and gurgle at me, but he was quickly tired and went to sleep. I am hoping he is safely home with his family this week and the doctors are diligently working on getting him on that list.
Now I know what some of you are thinking. HURRAY for the new healthcare plan Isaac will get a new liver!!! No. What the healthcare bill has just done, is tripled the list of people that "might" need a liver transplant. We in the US are all about entitlement. I am entitled to a new liver because I am an American and the government should provide me one. Well now the market is flooded with people looking for a free handout. This is how the government responds: We have this many people who "need" a liver vs this many available livers, we need to redefine and narrow our requirements for those who "need" one. Plus we are going to add a few hoops to jump through just to get diagnosed and then considered. So if Isaac was rejected once...what makes anyone think he will be accepted on the second time around?
Now I know some of you are like: "Jen you are think to the extreme! You are such a negative Nancy! You Right- Wing- Blow-up- the-World- Before- They- Blow- Us- Up thinker!!!" (Any of you who actually think I am like that...you are a reh-tard). Anyways, I speak from experience. Just to get a simple consult with an ENT for septal surgery has taken SIX MONTHS! I have to wait six weeks to get a woman's exam at the base. My doctor kicked me out of an exam room WHILE I was having a mental meltdown and rudely asked me what I wanted him to do about it?! And these things happen in the military community. Now think of what is going to happen when every freaking person in the US is going to demand care. Now I readily agree that reform needs to happen. But not this way.
Ok that wasn't the best defense I have, but its the best I got for being hungry.
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