Blood clot and other depressing updates

Riley's right leg has been extremely swollen for the past couple of days. An ultrasound found a blood clot in his leg in the femoral vein--the same vein that was used during his past two cardiac catheterizations. He is already on a therapeutic dose of heparin (a blood thinner), so some of the doctors are talking about putting him on coumadin, an anticoagulant. Anyway, here are some other updates:

1. Riley has been extremely tired. He has been sleeping most of the past two days and then also a good amount overnight as well. I was wondering if he has been extra tired because his oxygen saturation is so low post surgery--down in the low- to mid-70s, instead of in the mid- to high-90s prior to reversing his Fontan. No one seems concerned. They seem to think he's just recovering from "being run over by a truck twice."
   
   
2. Reversing his Fontan and reverting him back to the Glenn circulation may not eliminate the protein-losing enteropathy (PLE). We thought that putting him back to the Glenn was a guarantee to get rid of PLE. However, that's not true. We are hoping that it will do the trick, but there have been another cases where PLE did not go away. We will know in a couple of months. Hopefully if it does not go away, we will be able to treat it medically with heparin injections or occasional albumen infusions.
   
   
3. There is a lot of concern regarding Riley's nutrition. He has been taking less than 300 calories a day for the past couple of weeks (probably the whole month we've been here). We have started keeping a log of all food/drinks to get an actual number on calories. He may need to get IV nutrition. This is not necessarily a good thing. Apparently, IV nutrition can cause liver damage. Another option would be an NG tube--a tube threaded up his nose and down his throat into his stomach. Then high-calorie fluid would be pumped into this stomach. Neither of those options sound very appealing. His fluid allotment was bumped up to 1500 milliliters per day in an effort to get more calories in. However, more fluid in may lead to an increase in chest tube output.
   
   
4. His chest tubes are still draining enough fluid to mess with the albumen and electrolyte levels in his blood. He is now getting 25 percent albumen replacements.
   
   
5. The reason Dr. Karl did not put in the shunt during the Fontan reversal was because the extra blood flow through his heart would strain his already compromised valve. If his oxygen saturation does not land at an acceptable level (70 or higher), Riley may need to have the shunt put in (yes, that would mean more heart surgery). That would likely lead to valve failure and he would need that replaced. And recall that valve replacement means more valve replacement surgeries as he grows.
   
   
6. We have also come to the realization that a heart transplant is not "one to two to three decades" away, as we always thought. Rather, reverting Riley to the Glenn makes it more likely that he will need a transplant in one to two to three years.
   
   
7. Ken had read about another child online who had all the same surgeries Riley had an then was not a candidate for a transplant because of all the scar tissue in his chest. One of the doctors here told me that scar tissue does not preclude him from being eligible. However, every time he gets a blood product, his body builds antibodies. There comes a point where he has so many antibodies in his blood that it makes it very unlikely that a match will be found.
   
   
8. Finally, to top off all of this depressing news, when I was talking with one of the doctors, he used some extremely disheartening language when talking about Riley and Riley's future. He said, "assuming that we are able to get Riley healthy enough to get him out of here." And I stopped him and said, what do you mean "assuming we can?" He basically said (and I guess we know this on some level), that there is no guarantee that Riley will get healthy enough to ever go home.