Don't judge a book by it's cover

The same comments keep rolling in~"he looks great" and "maybe he has reflux".  I want to clarify these comments.  Yes, on the outside he does look great most of the time.  What people can't see in pictures are his episodes of difficulties breathing or the inside of him.  I feel as though when people are making these comments that they think I am making all of this up and that he is healthy.  They wouldn't label him failure to thrive if he was healthy, and he wouldn't be on lasixs if he was healthy.  The comment about the possibility of him having reflux has been ruled out!  I have known from the beginning that it was not reflux for several reasons.  Xavier had NEVER even had the slightest bit of spit up in his first month of life.  He always kept his food down.  It wasn't until we got into the hospital where they put him on medicine and began putting tubes down into his stomach that he started having problems with the vomiting.  He is never in pain at any point when eating or prior to vomiting.  They had put him on Zantac the second time we were in the hospital, even against my wishes, because they wanted to rule out the reflux, but he still vomited.  I know I am not a doctor or even a nurse but I do know my children and have some knowledge what signs to look for when they are ill as to what may or may not be causing something.  Like I have said in the past, my mothers intuition has NEVER been wrong in all of this.  If I was not reluctant and pushed for him to stay the second hospital stay when they said that "he looked fine" he would have possibly died at home.  I know my son and I know when something is not right with him or even "normal". 

I did not want to be back in the hospital this third time around, I thought we were all done for a little while, but I know at some point those holes in his heart will need to be closed.  He may not need them closed right now, but my feeling is that they will need to be.  The Lasixs is keeping the fluid out of his lungs, and his body has become dependant on the Lasixs because those 2 holes in his heart are pumping fluid into his lungs.  They are going to try to wean him off the Lasixs in the next few days to see how his body reacts.  There is a conference on Monday where they will discuss with all the heart surgeons, the cardiologists, and regular doctors~a team of about 20~to put some ideas out on the table as to his issues and how to solve them.  Unfortunately I am unable to attend this conference because they do discuss other patients at the same time as well.  I pray that Monday they come up with some solid tests that can confirm some of the problems as to the poor growth and why he is Lasixs dependant, because right now those are the two main issues. 

As far as looking into getting a second (actually it will be a 4th) opinion from a cardiologist in Boston, I am in the process of doing that.  I need to obtain his records and send the disk of his echocardiogram via FedEx to them and fax over his records.  The doctor there will then review them and give me his opinion.  Basically what I am looking for from him is his opinion whether he thinks those holes will close on their own.  Right now the tally is 2 for no, they won't close on their own, and 1 for they will close on their own.  His surgeon who failed to do the first 2 surgeries correctly is the one who is stating that "he is confident that they will close on their own".  With him saying otherwise will be him admitting that he had made another mistake in the second surgery, which I guarantee he is not willing to admit, because admitting it the first time was most likely very difficult.  I understand that Xavier had the LARGEST hole in his PDA that anyone has ever seen or heard of, but that doesn't mean that the surgeons shouldn't be trained to deal with those situations.  He should have been prepared, while Xavier's chest was open in the operating room as well as even the next day before they closed him up, to make sure that his PDA was properly ligated and there wasn't blood flowing through there still.  There is just no excuse for it to still remain open.  Even if the holes in his heart were the sole cause of him not being able come off the Lasixs the doctors state that his VSD is more the cause than the PDA.  One reason they are reluctant to go back in right away to do more surgery is because the VSD is going to be a very difficult surgery!  The VSD is in such a difficult spot in the heart to get to, that is why they weren't able to go after it in the second surgery.  But, if it has to be done, it has to be done. 

No, Xavier is not struggling for his life right now, but like I said previously he is Lasixs dependant to stay alive, and is growing very slowly. He does not reach his daily calorie intake nor does he even reach his daily required fluid intake. 

Please pray for wisdom for all involved and that they will make the best decisions as to what to do based on what HE needs to get well, and not thinking of how they can keep another lawsuit away from the hospital.

Hopefully this clarifies things a little more for everyone.  If you have any further questions please feel free to ask!  :)

I just love this little boy with all my <3!  His smile is amazing!



He is so stinkin' cute!  My little man!