I've got to vent a little. So a girl left me a wall post on facebook saying about Kayden after I told her he went to Heaven waiting on a heart transplant. She said 'poor thing you should have brought him to chb'. For one thing my SON is NOT a 'thing'. Another thing, do not tell me what I should or shouldn't have done. I already have enough guilt as it is. I do feel like I failed my baby some times, especially on those extra hard days.
Let me try to break down Kayden's journey for you into numbers...it may be a little hard because I'm super pissed and upset over this insensitive comment.
1.November 2010--Kayden had a cath, the results were not good, I probably blogged about this, but let me refresh some memories--His pressures were too high to be a candidate for transplant (I didn't know this until June 2011). Options were:Valve repair, valve replacement, transplant. I was told, he was too high risk for the valve repair or replacement and that Kayden would probably not come out of it. I was also told his body was hardly pumping enough blood to his body for him to survive...UVa wanted to get a second opinion and sent his results elsewhere.
2.Children's Hospital Boston (CHB) is the ONLY one who responded. The cardiologist called me personally and explained to me about Kayden's heart and what they thought they could do to fix it, he said there was only about a handful of people in the country with a heart like Kayden's. I guess because he had DCM and the tricuspid valve issue, he had some minor things going on but nothing that really damaged his heart or that I know of.
3. Boston changed his surgery date 3 times, first it was suppose to be in April 2011, then May 2011..And finally when Kayden got hospitalized in February 2011, his cardiologist in Roanoke flat out said he was worried Kayden wouldn't make it until May if he didn't have the surgery, SO he e-mailed the cardiologist in Boston and they changed his surgery to March 2011.
4. He had a cath and MRI done then. The cath results were actually better then, than they were in November. Kayden's heart rate & BP dropped during the breath holds of the MRI, thankfully he made it through it okay. And he was okayed for the surgery on March 17, 2011.
5. April 2011--He was hospitalized 5 days after coming home from Boston. He developed a pleural effusion and had to have a chest tube in for another week. After that is when Kayden went downhill again.
6. May 2011, his cardiologist in Roanoke, finally said he needed to be on the transplant list and e-mail UVa. We got the appointment at UVa on June 14, 2011.
7. When we went in Kayden was in cardiogenic shock (excuse my spelling), he went straight to the PICU after the clinic visit, he pretty much immediately got sedated, put on the vent, and got his PICC line placed. They were worried about him needing to be put on ECMO then or even not being able to come off the vent.
8.UVa did take 2 weeks to get all the tests done and blood work back before placing him on the list. They DID tell me if his liver or kidneys failed we'd have to find a way to get him to Boston. BECAUSE UVa said they would not attempt to take his glenn down and put him on ECMO, because it'd be heroic. So Boston would be the ones to do that.
9.After coming back from the cath lab Kayden had a hard time and didn't fully recover from it, after being taken off the vent a little over a week after the cath, he took a nap & woke up completely out of it. He couldn't control his movements, he couldn't talk, couldn't focus. NOTHING. UVa had no idea what happened and after he'd passed i looked through some papers I have and it said it appeared to be a mild case of chorea.
10. Kayden became an Angel waiting on his heart at UVa, should i have taken him to Boston because he was a high risk case?! Maybe. BUT when you're faced with that kind of decision, you're head isn't thinking like it should. I didn't put all these pieces together until after Kayden went to Heaven.
I would rather have my baby back than to face all of this. I have to live EVERY DAY UNTIL I DIE WITHOUT MY BABY!!! If you haven't lost a child then you probably should always watch your words because you may not mean them to come out like it sounds...but the way it sounds could be VERY RUDE and insensitive.
Thanks for listening to me vent! Sorry if I missed anything but I had to explain this to people who have no idea! Kayden knows I did all I could for him, nothing could change this. Doctors are not God, God is the only one who has the ultimate say so. HE had the power over my sons life.