Carter-Man is still fighting

Good Morning, Crusaders! I wanted to post a little update. There really has been no significant changes. Yesterday was a very difficult day for Skip and I. The day started with G-tube issues. When I gave Carter his 8 o'clock morphine and ativan, I did not notice that the gauze around his G-tube was wet. At 9 o'clock when the hospice nurse arrived, we both noticed it was soaked. We did some investigating and realized that the tube was leaking, meaning he was not getting all of his medicine. We also realized that Carter's GI system has slowed dramatically....he is not absorbing much of anything. Luckily, Carter does still have a PICC line. The only problem was that we only had IV ativan, not morphine. Our hospice nurse took care of ordering that and told us we should receive it later in the day and until then we could go ahead and try using the G-tube. Although, we had not been feeding Carter a lot, we had been giving him water. Without the G-tube, we cannot give water flushes or food. I realize we are at the point that Carter is not hungry but from the moment your child is born, your maternal instinct kicks in to feed your child. When they are sick, you want them to eat...you NEVER want your child to feel hunger....eating provides nourishment, vitamins,energy and all the essentials of daily living. It was very hard for me to realize that I can no longer feed my child. This led to a very difficult day. We did not receive his IV morphine until 8:30 pm last night. This was the first day that we saw issues with pain management..something NO CHILD OR PARENT should have to experience. Nonetheless, we managed to get through and were able to give him IV medicine starting at 10:00 pm last night. He had a good night, although his heart rate is all over the place. Before, it was very low, now it has shot back up again. I would imagine this is due to the tumor continuing to progress on the brain stem, thus affecting his heart rate, breathing, and blood pressure. His breathing has definitely changed this morning. He almost sounds like he is puffing rather than breathing. He has large periods of apnea, sometimes almost a complete minute of no breaths taken. Carter has beaten all odds and for that we are thankful. We are thankful that we have been able to stay on top of his pain and agitation. We are thankful that he has not thrown up. We are thankful that we have escaped any skin breakdown throughout this journey. Carter has now been strictly in the bed for 7 weeks and still no breakdown. HE IS ONE TOUGH COOKIE!!! Although we are in the middle of the worst thing that any parent can experience, at the worst time of year (which is supposed to be the most wonderful time of the year), we are still thankful for many things. This is a true reflection of the inner strength that God has given us. Our hospice nurse told us that Carter could pass at anytime. His lungs are clear but it is obvious that his body is slowing down significantly. Throughout the night, his breathing has changed. As the weekend progresses, I will keep everyone posted!! As always, thank you for your continued prayers, love, and support!