Turning Point

Oceana has been subdued as of late, not saying much and sleeping a lot. The count recovery couldn't happen fast enough now, as her nutritional level is beginning to be in question from not eating. High fevers with regular nausea was expected after the 6th and final lumbar puncture with IT Chemo. This accompanied by continued low platelet and plasma counts caused uncomfortable, continual bleeding as well as several vomit sessions. Decisions are determined daily based on her early AM labs.

First, the doctors decided after her declining state to take her off the Amphotericin anti- fungal med as it is very harsh on the kidney function and was potentially beginning to create greater risks. This is a relief, actually, as she suffered greatly and needed one to two doses of demorral just to help her endure the "shakes". This med was administered every 24 hours. The doctors have chosen a lesser med that apparently doesn't cover all fungus, named Caspo. Thankfully, no side effects from this have occurred to date.

Second, Vitamin K a new necessity as Oceana's perpetual bleeding was not a result of low platelets. Apparently, the antibiotics she is on wiped out the vitamin K in her system and therefore without it, the blood does not coagulate properly. This caused Oceana to perpetually bleed slowly from her nose down the back of her throat to her stomach. She would spit out large clots and obsessively wipe her nose. Exhausted, she yelled at Dad "make it stop". There was no stopping this slow dripping discomfort. Ativan was the order to finally relax Oceana so that she could sleep. This did not stop the bleeding though and Oceana was ill again upon waking from all the blood in her stomach. Another non-good day to give her nutrition. Oceana took the vitamin K, the bleeding finally stopped the next day. Whew, what a mess!

Third, eat Oceana eat! The doctors presented us the options. Option 1, the NG Tube (been there, done that) which is a tube allowing formula to go through the nasal cavity directly into the stomach. Oceana hated the feeling of the formula dripping into her stomach when she had to have one previously. Option 2, TPN which is protein that goes directly into the blood stream via the Broviak. This has two major cons to it: The risk of a line infection is great because bacteria is often in protein as well as possible damage to the liver with protein that has a higher fat content. Finally, option 3 which is that Oceana is able to eat and manages to start manifesting the needed nutrition through eating food. This being said, Dad made lasagna right away and has been brain storming on how to get her to eat. Oceana has started to eat as well as keep the food long enough in her belly to digest. This is good. We only hope that we are in time to prevent either of the first two options from happening!