Today was not a good day. I woke up with significant bladder infection symptoms and the pharmacy did not receive the order for the antibiotics until late.Glenn was not able to pick it up because the computers were down and I played phone tag all day with the nurse. She said that the doctor ordered it however she went to surgery before it was signed off. I tried all day to find out if it could be picked up at the VA pharmacy. Bremerton said yes can that it can be transferred over however VA said that they can not. The Fellow at Children's wanted to call in the prescription for me tonight however she was not able to do so, which I completely understand. However the charge nurse called Bremerton pharmacy after 10 PM tonight and was told that I could go to a local pharmacy and have it transferred, well this requires a pharmacist to be on duty, he was a tech and was not able to do this. So I have to suffer until the morning when the pharmacist at Bremerton gets there. I wish I had known this earlier tonight. Hopefully the pharmacy tech provided accurate information. I need to check with Tricare about transferring my care to this side of the water.
Abraham got his breathing tube out, (for a little while). I got to hear him cry today and so did Katie. He even sucked on a pacifier. His 12, 3 and 6 feeds were not given because he was getting extubated (breathing tube out). I questioned, "wait a minute he is a tiny baby with no feedings and no IV fluids" for almost 8 hours.I pointed this out to the nurse however the doctors were reporting off for the night. I got concerned about low blood sugar and electrolyte imbalances. Katie and I waited to leave after the IV fluids were started. I wanted to make sure that he has some fluid going. An adult or even an older child can tolerate not eating and no IV fluids, but when you weigh less than 5 pounds, have trouble maintaining breathing and your body temperature this is not good. When I got back from Babies R Us the resident stopped me before going into his room to let me know "he stopped breathing so some reason, we are not sure why". I question if the lack of food and fluids for over 8 hours may have contributed to his crumbling status. The resident assured me that was not a factor that caused this. He was drugged up, I mean the poor kid had his eyes opened and did not have a clue that I was there and back in the incubator he went. This broke my heart to see him like this. He barely was responsive to me and his heart rate was lower than normal.He lost a little more weight too. I am concerned about infection: low temperatures and heart rate. His heart rate is normal but lower than normal. Please pray that his feeds can be restarted (temporarily on hold), that he tolerates the new endotracheal tube, that he gains weight instead of losing it, that he does not have an infection and that I won't get the run around with getting my prescription filled.