Scope is Done, Now We Wait and Pray

Yesterday proved to be a VERY long day for us. Simon did not get in for his scope until 4pm and he was asking for food until he fell asleep at noon. Hard to hear that when he barely eats much. The scope went ok. I have no answers yet really as they are waiting on pathology. Please pray it is NOT GVHD (graft vs host disease). It is very hard to get rid of and takes forever and alot of meds get added back on that will hinder his immune systems return. So pray for that please. He was put on TPN (iv nutrition that dave and I will administer every night for 10 hours) and I was sorda angry that the bags arrived containing only 340 calories. If his gut is suppose to rest how can that amount even help him. Last time he was on it he had headaches and we think it was from the fat in it so this time that was eliminated. Dave and I wanted to turn in early but all of the medical supplies arrived close to 9pm, we had trouble getting the pump to work properly and then once we mixed the TPN we went to hook simon up only to find the cap on his port IV was not a home health one and we couldn't hook him up. After looking through all the boxes from past deliveries we found a cap and did a sterile cap change and finally at 11:30 pm, got him hooked up and going. He has poop 4 times in the night which baffles me since he had no food yesterday and still is having it today. Not to be gross but its mucus and green or brown in color. This morning he was starving and ate toast and a small amount of sausage and eggs and immediately said his tummy hurt. I don't know what is going on. To top it off he and I both have head colds of stuffy noses and my throat hurts so not sure how he is feeling there. He ran a low grade temp last night which he never does. Today I spent the morning with the girls, marr to dance class, isa and I went to a sport sale friends of ours were having to profit charity and then to dunkin donuts for some one on one time. We ran to target and jewel and hope we are stocked up for the next week and a half for sure. These are everyday things but in our house it is hard to fit in grocery shopping as I cannot take simon during the day. He is sleeping now. I pray the sleep gets him well and we can move past this once and for all. It was just June when he was on TPN and its just not right. The GI doc said the further he went up in Simons colon the more angry it looked. He did biospys of those areas. Simon also had a mole removed that he most likely acquired due to his two times of chemotherapy and it has been growing, shrinking and changing so we removed it yesterday. Pray that its benign. Okay so tomorrow we hope to go to the Wizard of Oz fest and have a little fun outside with the kids. Today we rest. Simon has blood draw tomorrow through the home health nurse so please pray for him to heal and get better. Its been 4 weeks so far of all of this. We are tired and just trying to keep up. I want to see my spunky boy back as he is pretty droopy now for sure. Please pray hard for him. Thanks God Bless Tracy