Two Steps Back

After our really good day yesterday, we took a step back. Maybe two steps back. Maybe it was my fault. I hope not. There is a lot of guilt tied up with helping a sick child.


They had to unclamp the NG tube and start suctioning his stomach again because he threw up this morning. He was craving water ~ his lips are peeling with big flakes of flesh hanging off his mouth, his tongue is swollen and cracked and he is afraid it will block the back of his throat and he'll choke to death. So I asked if he could have little sips of water instead of just rinsing out his mouth with miniature sponges on sticks that look like lime green lollipops. Then he would beg for more water, his eyes pleading, and I let him have bigger sips of water. Eventually he convinced me that he didn't want to have to wake me up all night when he needed water, so why didn't I just put the glass of ice water on the table next to his bed?


I was so tired, and probably deliriuos myself, so I did it. This was about 3:am. At 5:30 I woke up and he had just had more projectile vomiting. Nurse Robin said he had the water, the whole cup at one time, and immediately threw up. :-( Guilt.


They hooked the NG tube back up to the suction thing and within an hour it had come apart and bile was all over him and the bed. Second sheet change and bath within 1 1/2 hours. He looked at me with shame, humiliation, fear and sadness.


"When will this be over?" he whispered.


Shortly after the respitory therapist came in to do his breathing treatment, Nurse Bronwyn started asking Parker questions. He was in his usual state of morphine delirium, which concerned her a lot. Especially since his breathing his labored and he has some wheezing. Remember, we don't want wheezing? As she was talking to him and listening to his rambling answers, he started having chest pains. Ugh. Add one more thing to the pile.


We are taking him off the morphine (thank God!), putting him back on Dilatin (sp?) which did help him rest more at the other hospital.


On the good news front, no more blood on the little test kits (yea!), his heart rate has stabilized (still very high, about 130, but not shooting up to 150 qnd 160) and the nurses said they wanted to hire me. Which was REALLY good news because it means they won't throw me out.


I love you Parker. I miss you James.