Things are never simple with us

Things started off really easy. We went in and Avery was able to get the probes for the testing placed without anesthesia which was a blessing. A couple of hrs. later he had a high fever which would not have been good if he had gone under. When you have a central line and a fever, there is always a concern that there is an infection in the line. They run blood cultures to be sure. Luckily his were negative for line infection. So we were doing pretty good.

The day of the testing started off okay at 6am. They ran the test without any food in his gut and NO response. This was not good b/c there should still be a response. Then they fun the test with formual and should see a good response, still not a good response for Avery :( Then they give really high doses of meds and we see huge responses. So what does this all mean???

With the right medication we may be able to feed Avery in his gut. Problem is, there is only one med. possiblity and that is a big whatif. So basically back to square one.

Next problem: Avery has not even gained an ounce on TPN (IV food). Major PROBLEM.

Next Problem: because of his metabolic disorder it is REALLY difficult to change the concentration of his TPN without really causes major seizures and other big side effects.

So that brings us to another 4 day stay to fine tune his TPN and pray he has no major reaction to the change. We are supposed to be going home on Tues of next week. Man, I thought we would be home on Friday the latest of this week.

Next problem: Avery has a severe iron deficiency requiring iron IV infusion. This is not good b/c you can have a severe allergic reaction and from what I have been reading can be very dangerous for kids with mitochondrial disease.

Next problem: Avery spike another high temp. tonight so more blood cultures and pray he has no line infection.

So basically things are very technical. There is never an easy answer or solution. We just pray that we can get some weight on him quickly. Not the stay I had anticipated but then again this IS my crazy normal life, right.