Where to Start???

So yesterday started off as a bang and it pretty much continues with unexpected news. Bare with me as I know I speak medical as it is my second language and pretty much assume that everyone else does so I will try to simplify things.

As I said yesterday we learned Avery had a positive blood culture (gram negative rods) Basically its an infection in his blood that entered through his port (central line) Bacteria loves foreign objects for which the port is and quickly attaches itself to it. Any bacteria in your blood can make you very sick and even septic. This is what happened to Avery yesterday. There are three types of bugs (gram positive, gram negative and yeast) If I had to pick I would take the first one as you can try to treat through them sometimes but where the source of infection came from his initial infection around the skin, it made it really difficult to keep the port. But I obviously can't pick and Avery got gram negative rods instead.

He went into the OR about 3pm to have his port removed. I was very nervous b/c I know how difficult he is to get another one in. The other major problem is once they remove his port he still has to have access and his veins suck (you will see just how much). He needs to be able to get fluids, TPN, possiblly blood, IV antibiotics and IVIG infusions. It is not safe to put a new central line in until you have at least 48 hrs. of negative blood cultures. BIG PROBLEM.....

They have no difficulty in the OR removing his port but they still needed to get a couple of good IVs in him. Here the problem lies. After an hour and half the anesthesiologist used him as a pin cushion and got ABSOLUTELY NOTHING :( The kid looks like he has been hit with a nail gun. No kidding. She was quite upset b/c she had to stick him so many times and came out with nothing. She said all of his veins are shot. So we still needed access right, The surgeon had to put in a temporary central line back in the same area as his infection. NOT GOOD. Because there is a very high risk of it getting infected. SO this can only stay in for 5 days max. Another problem, he had a fever this morning so he still seems to be postive for infection. We also learned he was positive not only in the port but also in his bloodstream.

Another issue is the not only is it difficult to get IVs on him but we are extremely limited on central access (kid has only had 3 lines). The surgeon wants a head to toe CT so they can see what is what. This makes me very nervous b/c he NEEDS access. There are some other procedures to get it if you have to but they are very invasive. Problem for Avery is his history of major blood clots, drs. are very cautious about it.

Wheeewwww. You get that all..... The crazy thing is that little man actually looks pretty good today with some smiles even. He is just telling me that things will be fine momma. So we will see what the plan is for today whether we have to remove this line or not. Prayers for negative blood cultures and we can keep this line until he has to get a more permanent one.