Lots going on

Sorry I haven't posted since Saturday. I attempted it yesterday but B was pretty fussy all day. Anyway...
Brady's blood culture results were not good. He has two infections going on. His PICC has an enterobacter infection and his IJ is positive for staph. He is now on vancomycin for the staph infection and ceftriaxone for the enterobacter. Luckily, they think they caught the infections early before they spread to his bloodstream. He hasn't had any more fevers since Saturday so that's a good sign.

He is still in some pain from the surgery but his incision and G tube site are healing very nicely and he is tolerating his feeds well. He is up to a continuous feed of 10ml per hour. He was weighed yesterday and was down to 2.91 kilos from 3.0 so they are starting TPN nutrition to supplement him until they can get him to full feeds (20ml an hour). Once he is tolerating full continuous feeds then we can start attempting some bottle feeds combined with a bolus feed.

From a heme standpoint, he is back to requiring daily transfusions and on Sunday he actually needed two transfusions because his counts dropped so low. Tomorrow he will get another IVIG treatment and Dr Ambrusco said he is going to reach out to some other hematologists around the country (specifically one at Cincinnati Children's & one at Texas Children's) to see if anyone may have a better idea of what is going on with Brady. When I spoke with heme this morning they told me they are concerned about transfusion-related iron overload. When a person receives chronic blood transfusions they take in excess iron. The body has no way of eliminating this excess iron on its own and it builds up in various organs like the heart, lungs, and liver. If left untreated these build ups cause major problems and can even lead to organ failure. They are going to start daily chelation therapy on B today, using a medication called Desferal, which will allow his body to eliminate the excess iron. It's necessary but scary because it comes with the risk of some significant side effects: joint pain, muscle pain/tenderness, bone problems, fever, headache, nausea, hives, stunted growth, and injection site reactions are all fairly common. Also, the chelation is done over a very long time frame -- between 12 & 14 hours typically -- so he will spend most of his day hooked up to an infusion pump. This creates a problem for B. On Saturday he pulled his IJ half out and they had to remove it. So he is down to one access line, the PICC. But he uses his PICC for IV medications, IVIG, and blood transfusions. Now he also needs continuous TPN and nearly continuous chelation meds so they will have to place at least one additional line, possibly two.

Respiratory wise he is doing very well. He is still on 2 liters of oxygen but he is maintaining a normal respiratory rate which is awesome! I haven't seen anyone from long center since last week so I'm not sure if they plan to wean down further on the oxygen or of 2 liters will be his regular requirement.

Through all of this I'm trying to just take it in stride, one day at a time. But the longer this goes on without answers the harder it gets. I just want my baby to have a chance to get to know a life that doesn't revolve around one procedure, medication, and assessment after another. I want him to know what it's like to be home with his family. If the IVIG therapy isn't helping him I just don't know where things go from there. I've been doing some research myself trying to figure out if there is anyone out there or any hospital that might be able to help my sweetheart. At this point, from what I've read, Texas Children's is the front runner. They have one of the top pediatric hematology/oncology units internationally. So now I keep going around and around in my head, do we try to take him someplace else or continue to have faith in the doctors here? Even if we did want to have him seen someplace else, how do we go about doing that? Do we even have that right? Logistically, how would it be done and would insurance cover a transfer?? My mind is overloaded and I don't know where to turn for those answers. I'm not sure if there is someone on staff at the hospital who handles this kind of situation or if they would even be helpful. If anyone has any thoughts or information please share!!!