We have a couple days of updates to do, it has been really hectic here with Jason working and trying to get the house in order.
Friday marked a milestone for Sam as, through increases in his nutrients in his IV, he reached his birth weight again.
On Friday we also received the last results back from Sam's latest round of blood work. Once again, everything came back normal. On Friday they prepared us for the best and worst case scenerios. They decided to begin feeding him again, but this time with different formula. Pregestimil is a formula made by Enfamil that is normally used for babies with malabsorbtion problems. It basically is a formula with many of the nutrients and fatty acids already broken down so that the body does not have to work so hard to absorb these essential ingredients. Since they are no closer to determining what is causing Sam to be sick they are hoping that if he can tolerate this formula and can thrive on it that we would be able to bring him home and do further testing on an outpatient basis. Since the only thing he would be eating for the immediate future is formula, we could get back to a normal life and it would buy time for them to determine a diagnosis. On the flip side, if Sam does not tolerate the formula, Dr. Rhead would like to draw more blood and retest everything we have done so far and include a few new tests. Our doctors here do not think that these new tests will show anything as we have done this so many times already. If Sam does get sick again they would like to send him to Milwaukee or Madison and perform a skin biopsy. Here everything gets a little technical, but basically they want to examine the mitocondria in his cells to look for abnormalities that may lead them in the right direction for a diagnosis. They have also would like to do further testing on his liver which may entail a biopsy of his liver at some point.
On Friday at 3:30 pm they began to feed Sam. He wanted nothing to do with it and we had to put a feeding tube back in through his nose. At some feeding after that he did take some formula orally and we have been warned that it make take some time for him to get back into the habit of having to eat.
On Saturday Sam was still willing to eat on and off so some formula is still going in through the tube. Sam' weight had increased slightly and his blood gases still look good. He is alert and awake and very aware of his surroundings. So far so good.
On Sunday morning Sam's blood gases still look good. He lost a little bit of weight since his last weighing and they will be keeping a close watch on that.
We are trying to remain optimistic, but cautiously. The last time we started to feed Sam it took him longer to get sick than the time before. Although he is doing well with food now, that could still change. Because the nutrients in the formula are broken down for him already this could also delay the onset of any symptoms.