Ups and Downs

It seems like with Rebekah whenever we have an up, we also have a down. That's how this week has been!

On Tuesday, Rebekah met with her surgeon about changing her g-tube. He felt that she had not grown enough to warrant a change. Unless there is a defect with a tube, Rebekah's Medicaid will only allow 4 replacements in a calendar year, so replacing a g-tube prematurely could cause problems with getting new ones. So, we are (were) going to wait until Rebekah grows a few more pounds before changing her tube.

The down is that last night while connecting Rebekah's tube for her night time feeds, Drew noticed some redness around the tube site again. He was looking more closely at it, thinking that maybe her tract infection had returned (and maybe it has, we don't really know yet) when Rebekah kicked the connection tubing and pulled her g-tube part of the way out of her stomach. After working with the tube a bit, we were finally able to get the tube completely back into her stomach, but it was apparent that she was in a good deal of pain. We immediately called the surgeon's office and, thankfully, were able to speak with a surgeon who has seen Rebekah in the office before. He walked us through testing the balloon and we realized that the balloon is leaking. Whether it had a leak before and we just realized it when Rebekah kicked it out, or whether the force of her kick was enough pressure to cause the leak, we will never know. Either way, we were not able to use her g-tube for her feeds overnight, and she did great! She slept all the way through the night, which was a huge treat for me!! It has been months since I have not had to get up and refill the bag for her overnight feeds.

This morning we will be seeing the surgeon as soon as their office opens. The will be replacing Rebekah's tube, most likely with the size that she currently has. Putting in a tube that is too big can cause leaking and rubbing that can lead to a lot of irritation and skin breakdown. With Rebekah's skin already being so sensitive, that would not be a good thing!

There were some ups and downs in the world of therapy this week, too, but I don't have enough time to get started on that post right now. The bottom line is that we will be getting the therapy Rebekah needs, even when it means driving almost an hour one way to get it. I will definitely put all the details in another post as soon as I can.

Please pray for Rebekah this morning that she will not be in any pain when the surgeons change her g-tube. Also pray that there are no additional problems with the tract (infection or damage from the tube when she kicked it). And keep praying that her collateral arteries will grow! :)

Nancy