Tuesday, October 27, 2009
Don't Give Up
I need to get some new pictures of our little man without the tube!
I spoke with my mom a little after 6pm. She has been there with Rachael and Jimmie for most of the day. Justin is working his 24 hour shift at the fire station. Today has been harder for Jimmie than yesterday in that he isn't taking his solids as well and all eating and drinking has been more of a struggle. However he has taken in more liquid than yesterday so far. Yesterday around 6pm he'd taken in about 80mls- today at 6pm he's taken in about 116mls.
The bad news is his nose has been running all day and he's been choking on mucous. This makes mom and Rachael very suspicious that he may indeed have caught Rachael's cold. Which means it's very likely that he has a sore throat. This throws a monkey wrench into everything. Dr. H. is aware of his symptoms and has advised Rachael to do like they did yesterday and tube feed Jimmie at 9pm, 12am and 3am . . . Then tomorrow morning he will look at Jimmie in his clinic and if Jimmie does indeed appear to be sick Dr. H. will probably make the call to postpone this weaning attempt.
This is very discouraging to Rachael as it will probably be a couple of weeks before they try again. Please pray that she'll have patience and perseverance. Mom said it is safe to say Rachael was very weary today. Making statements that sounded like she feels the g-tube is inevitable.
Pray that Rachael and Justin would continue to have hope and strength. I think Jimmie can do this, but that it may be a long process. A process that takes a lot of patience and stamina. Rachael comes by "stamina" very naturally- "patience" however is a bit more challenging for her.
Pray for Jimmie's anxiety. Mom said it's very apparent that he is anxious as he tries to eat especially drink. She says when he needs to burp he basically freaks out and then when just air comes out and no puke he looks relieved. He had so many scary and painful pukes before his reflux was under control that he was obviously very traumatized by it. And he still pukes, not necessarily scary or painful, but he pukes enough that he doesn't forget about it. He puked at the end of two out of his 3 tube feeds last night. Dr. H. has suggested that Rachael put Jimmie back on the Zantac just to make sure that his gastritis isn't causing him pain and contributing to his struggle with eating. Thus far Rachael really hasn't felt that he's been in pain, but more that he is anxious and scared. But she will do as Dr. H. has recommended with the Zantac.
Our friend Chris is there with Rachael now and Rod and Kathy will help her this evening and overnight as they always do.
I will update if I hear anything new tonight, but if not then I'll post after Jimmie's appointment with Dr. H. tomorrow.
Thank you so much for your support, prayers and words of encouragement.