Thursday - 9/15

Well, one would hope after being here almost a week, we would have plenty to report and update...not so. Sorry to say, we are not really getting very far in Caleb "better". When some lab work shows improvement one place, it also shows that other things are worse. At this point, Caleb has retained so much fluid that he is huge and in a size 6 diaper! He came into the hospital in size 3!! It is miserable to watch and can only imagine how he feels about it all. Although, he is kept completely sedated because of the ventilator. Drs. have tried different meds to make him get the fluids off, but they are just not doing much. His blood pressure has been better the last 24 hours so they were able to come down quite a bit on the blood pressure medicine. This has to be the worst thing a parent could go through...spinning our wheels in hoping Caleb will get better. Just feels like they have been spinning for days now and we are just not seeing any improvement. The liver seems to be getting better according to the labs, but the kidney numbers are worse OR you have one lab item show improvement, but the other lab pieces that go to that puzzle are worse, so he is certainly keeping these Drs. and residents on their toes! I understand this is going to be a very long, tedious process, but it would just be so much easier if we knew how things were going to go...how well he may or may not recover, etc...

So if you are the kind (like me) who likes to know the full run down...
Neurological - hard to say what brain damage has occurred but he does start to stir every so often, but he is just given meds to put him back to sleep.
Respiratory - he is on a ventilator, but his lungs are becoming really affected by all the fluid that is in his body plus that level of inactivity.
Cardiology - his heart rate has been fine. His heart function is somewhat affected. He has what is called endocarditis (sp?) which is where the lining on the inside of his heart is very swollen and mad. This is what is affecting the flaps they just made for him during his heart surgery as those do not open and close anymore. so as the heart pumps out, the heart is not relaxing enough to fill back up with blood and these flaps on his vessels are causing all kinds of 'leakage' or blood just free flowing in and out of the heart. Not pumping out and staying out to go to the body...just back and forth through the wide open vessels.
Liver - lab #s show slight improvement each day, but his bilirubin is becoming quite elevated so he is a little yellow, but NOT the type of bilirubin that can be fixed with photo therapy like newborns.
Kidneys - lab #s show a decline in function each day, which is the cause of why the fluid just keeps building up in his body. But yet, some electrolytes that would be affected by this lack of function are fine.
The cause of all this - Alpha Hemolytic Streptococcus!!! A raging strep infection in his bloodstream. It is a Strep that is found naturally in our saliva and GI tract and how Caleb's got into his bloodstream - we may never know. :(

Will keep this updated as best I can as anything changes, but at this rate...
As you can probably tell, I am quickly becoming one very weary momma. Having a very emotional day and just do not know what to do at this point...how long do we "wait and see"???
Thank you again and again for your support, encouragement, comments, meals, and prayers through all this!

Joanna