The name of the game right now is that Timmy needs to get up to full feeds before we can take him home. 16 days ago his J-tube was pulled and we were told that the hole that remained would have a good chance of closing up on its own in 2 days; then it would be a few more days to get him on full feeds and then we would be able to take him home. Now his J-tube hole is still leaking bile here and there (this afternoon it suddenly leaked a lot, so much so that it pooled in his belly button and ran down his diaper--making him soundlessly scream in hysterics) and now the hole looks bigger than it did this morning. I know we should be thankful and all that we are coming to the end of this hospital journey, but it's not; it's not ending. His J-tube hole isn't healing, it's getting worse and the alternative to just waiting it out and hoping that it heals is yet another major abdominal surgery. We can't keep living this way. I can't keep going to work for 5 days a week 120 miles away from my family. And Michelle can't keep living as a prisoner all week between the Ronald McDonald house and Timmy's NICU room only getting to go on BabiesRUs dates with her husband on the weekends all the while keeping track of the whole medical history of her son while finishing her dissertation.
Anyway, this is supposed to be from Mortimer who is just too flustered to write anything right now. I've asked him what exactly made Timmy gush so much bile today but he's still too speechless to tell us. He did mention a few days ago that he is worried (as we are) that Timmy hasn't been able to have any tummy time because of this J-tube hole issue and most of the next major developmental milestones are dependent on having tummy time every day.
Meanwhile, when Timmy's stomach isn't being eroded away by stomach acid, he is just as happy and curious as ever. He's learning to reach for things and likes me to read him stories. He loves to sit in his bumbo and watch people walk by his room. He's discovering how good things taste, especially his fingers (we think he might be starting to teethe already). And he loves to be held and rocked to sleep. We love you Timmy and we hope that someday your life will be easy.
We waved to Timmy as we drove past Children's late last night. If there is anything at all we can do... I know the best thing to do is pray and the rest is completely out of our control, but we're human and we hurt and struggle and a thousand times over when it's our children who are hurting or struggling and there's no end in sight. *hugs*
ReplyDeleteAmen to that last line.
ReplyDelete