Going home...or not

Today was supposed to be the day we were going home.  The doc's had decided this morning to do an echocardiogram of his heart to make sure that no bacteria had deposited itself in his his heart.  The term they used was called "vegetation".  While the echo was ordered for around 9am, it took till almost 2pm for them to do it.  We had gone over dismissal orders and I'd showered and packed our bags, formula and supplies had been brought by from home health.  When I was watching the echo, I thought something looked funny in his right atrium.  Something big was bouncing around in there.  I don't know much about the heart, but it didn't look like a valve, and there wasn't something like it on the other side. The tech also measured it, so I had my suspicions,but  I tried to remain positive.

Around 4, the doctor came in and told us they had found a "vegetation" of bacteria in his right atrium and they would consult with cardiology and infectious disease.  The cardiologist came in and gave an indepth explanation.  Luckily, they didn't think they needed to go in and surgically remove it.  He hadn't looked at the echo, but was going to look at it, and was hoping we could also stay away from heparin.  We would need to do 6 weeks of antibiotics, and frequent echocardiograms.  He wanted at least the first three weeks to be done from the hospital.  If you can imagine each time the blood swishes through the heart, it comes in contact with the bacteria; so it will be important to keep the antibiotics going for a long period of time.  Also part of this bacteria can break off and go to the lungs and cause what's called a pulmonary embolism.  That also isn't good either.  Eventually this piece of growth should shrink and become more like a scar, and then it won't be harmful.

About 1/2 hour later, the doctor came back and they felt like it was necessary for him to be on heparin, which means he needed to go to modified ICU.


Once we moved floors, we talked about the fact that his antibiotics and heparin could not go in the same line together.  Matthew only has one line.  They talked about an IV, but Matthew doesn't have any place left to put an IV in.  His last IV was in his finger, not a good place for antibiotics OR heparin.  So the decision was made tonight to put him on Lovenox instead of heparin, which can be given as a tiny shot in his leg twice a day.

Here are some of the things swimming around in my head.  First, Matthew is enrolled in Palliative care here at the hospital.  I don't think I've ever talked about it.  Palliative care IS NOT hospice.  Palliative care is about helping us make really good decisions that are best for Matthew, and don't always mean doing everything medical possible.  That gives us liberty to easily say NO to things, or how can we do this so Matthew does not have to be in the hospital so much. It's given us the opportunity to have discussions with care givers beforehand about what we would like for Matthew.  It helps us give Matthew quality, and with maybe the sacrifice of quantity.Making it reasonably safe for Matthew, but maybe taking risks that one may not normally take.  Case in point: Letting Matthew go home on IV antibiotics, knowing that there is a chance part of that could break off and be potentially lethal. If he were in the hospital, he would have a team readily available to do EVERYTHING to him; at home, he would be comfortable.  As a family, we want Matthew to be at home  as much as possible and take some risks, knowing that Matthew is happier at home.  Make sense? Maybe not, but we have chosen this for Matthew.  I personally know that I want quality good time while I am on this earth..not just to exist here.

This new finding is not something to take lightly, there are lots of complications, (some that I haven't mentioned) that could arise from this.  We are being very cautiously optomistic that he will pull through this like a champ.  He has overcome lots of things in his short little life. He IS a fighter.