Tube Clogged

Well, we have had an exciting weekend! Toby's appointment with the GI doctor on Friday went well. She gave us some ideas for relieving the air in his belly and since then it's been much better, and we're slowly increasing his food intake up to 42 ml an hour for 20 hours. Saturday we had a picnic with the moms group at our church, and our day nurse was able to go with us and Toby. It was great; our weather hasn't been humid this week/weekend, and it has been wonderful to be able to take him out places.

This morning while I was giving Toby a medication through his GJ tube, it got clogged. It's a medication he's on because they found a bacteria in his urine culture this week, so they're treating it with this really thick and yucky medicine. We ended up having to take him to the hospital (Radiology) to replace the tube. To explain a little further, the G-tube or Gastro tube is a larger white tube that goes into his stomach. The J-tube (or jejunum) tube is a smaller tube threaded through the big G-tube that goes into his small intestine or jejunum. It was the J-tube that was clogged, I tried flushing it with water several times and even tried Coke, and nothing worked. Thankfully we weren't there too long, and now he has a brand new one for our trip to Michigan. He still has to receive this medication for 2 more days, so pray that it doesn't get clogged again. An answer to prayer that we had this week, is the granulation tissue around his G-tube is going away and NOT coming back. On a tip from a new friend, we stopped putting gauze underneath this round plastic circular disc that holds the tube flush with his skin, and since then we have had no scar tissue. Yeah!! We have lots to do this week before we head to Michigan; feeling excited and a little overwhelmed, but I know it will get done. Have a great evening!

Eight Pounds and Conor's Eye Surgery

Toby had a good day. They threaded the smaller tube into his jejunum (small intestine), through the g-tube (larger tube in his stomach). He seems very content on the ventilator. He's sleeping well, and I believe weighs about 8 pounds. He even had a massage today from a therapist. She even taught me some things to do to soothe him. We're learning more and more about his care, and it's going well. I feel very comfortable suctioning out his trach, and Bruce and I have both been practicing quite a bit. They continue to work on coordinating his care at home. So, we wait! :) The boys come home on Saturday, which we can't wait. We miss them very much. Conor also has eye surgery to move the muscles outwards, since he crosses them even with his glasses. It's at Children's - outpatient, but pray for him. This is my child that can't stand to have his blood pressure taken!! :) I don't think he's going to do well with no food after midnight until surgery. I know God will help all of us through that also. Have a good night!