Pulled out her gastrostomy tube

28/2/08 This morning i woke up at 5 15am. I thought something was wrong with Skyla. I had a feeling something had happened, so i rang down to check on her. They said she had a desating episode at midnight and that at 5am this morning, the cheeky little girl decided to pull out her gastrostomy tube. (the new one in her belly). It was being held in with a little balloon at the end of the tube that has filled with a bit of water. She actually managed to pull it out, balloon still inflated through her tiny little hole in her belly. The nurses said she let out a little cry. By the time the nurse got to her she was happy and smiling. She is so cheeky. 2hours later it was inserted again. It was pretty red and swollen. They gave her some morphine incase it hurt her but she didnt even flinch. Since then the feeds have stopped as the hole is now abit big and it is leaking. She is back on TPN and LIPIDS for 48hrs as they are hoping the hole will reduce in size, otherwise they may have to insert a larger tube or re operate and make another hole for the gastrostomy. Hopefully it wont come to that. Tonight she decided to drop her heart rate to 51 and desat to the low 80s. Its just one thing after another with our little girl. When she is good, she is great and when she is misbehaving, she really misbehaves. Her xray the other day showed she has pretty crappy lungs. Its the chronic lung disease and she has pulmonary hypotension. They said its pretty bad, but i am hoping that because she is still young, her lungs will continue to grow and get stronger in time. They did say when we eventually get to go home she may have to go home on oxygen for a bit. That scares me a bit but if its a way to get her home then thats just what we will have to do.