I waited all day long for a call back from the Gastronologist office and wouldn't you know it, it came the first time I put my phone down while I was putting Luke back into his car seat. The message I heard on the phone sent me into a bit of a panic because the Dr. was telling me to take Luke into the ER, also telling me to pack an over night bag as he didn't think this would be a quick in and out visit there. I immediately tried to call the Dr.'s office back, but of course they had waited until they were closed to call me, so I tried the after hours phone number with no luck. Gordy and I discussed what to do when I got home and we both decided that Luke did not look like he needed to make trip to the ER, just because this Dr. was too busy to see him that day. Luke seemed to be doing better and we decided that if we saw anymore blood at all we would take him in right away.
Needless to say I went to bed at 8:30, as soon as I had all the kids in bed. I was so exhausted I was shaking, my heart was racing and I felt sick. I told Gordy to let me sleep a few hours and then I would take over again. But no, my sweet husband knew that I needed a full night of sleep so he took over Luke duty last night. And praise God it ended up being one of the best nights Luke has had in a very long time, he didn't alarm once and didn't need any extra oxygen, no more blood was seen and he didn't even need to be suctioned at all, all night long. I ended up getting close to 10 hours of sleep, just what I needed.
This morning I got a call from Luke's Pediatrician that sent me into a spin again asking me why I wasn't at the hospital with Luke. I told him that Luke had had a phenomenal night, that we hadn't seen anymore blood from his g-tube and that we didn't feel like he was sick enough to go to the ER. I promised to call his GI doc that morning and get an appointment. He was fine with that but he wanted a call back by noon telling him what our plan of action was. Thankfully the GI nurse called at 11:00 saying that the Dr. could see him if we were there by 11:30, I told her I would do my best to get there by that time, since it was at least a 20 minute drive. I made it there by 11:38, then waited an hour to see the Dr.
His GI Dr. looked him over, checked out his labs and told me that he was expecting to see him looking a look worse than he was. He decided that we are going to be doing a bunch of procedures over the next two weeks to be sure that all his digestive system is working okay and to see what could of caused the bleeding. He also told me that we had made the right decision in not taking him into the ER the night before, that was music to my ears.
We also saw the dietitian who was concerned that Luke has not gained any weight in the last year. I told her he had gained some but had lost it during this sickness that he's had recently. We've decided to up his feeds and are hoping to see some weight gain soon. She also said that she wanted to get his blood tested for what his vitamin levels were like, so that meant another blood test today. Poor Luke had three days in a row with needle pokes.
Luke is having another great night tonight, which is such a gift from God, since I told the boys that they could have some friends over to spend the night. I am going to get some sleep and hope that Luke continues to make good progress. Thank you for all your prayers, they really are what keep us going.
Love in Christ,
Luke's Mommy Sue