Home With The Tube

After 1 week in the hospital Rachael, Justin and Jimmie are home. Home is now at Rod and Kathy's (Justin's parents) house. Apria delivered all of the stuff related to NG feeding Jimmie this afternoon. I wish I could be all excited about the fact they are out of the hospital. I wish Jimmie was better and that's why he is home, but that's not the case.

We are glad they are out of there, but the fact that Jimmie is not eating by mouth is really hard to take. Rachael is learning to get the tube in the right position, mix his meals, work the pump, flush the tube and clean everything after. She always offers him the bottle and mostly he's been refusing it.

He does seem to be in less pain then he has been and not puking today nearly as much. Maybe the Prevacid is starting to work better and maybe cutting out the Erythromycin was a good thing. And of course mom has continued TKM sessions with Jimmie and he always seems to do better after a session. We'll see... The one thing we've learned over the last 2 months is what seems to be working for Jimmie one day might not the next day. Very inconsistent, very frustrating.

Jimmie now has a nutritionist who has worked with Rachael to come up with a concoction that gives him enough calories, but is mostly breast milk. We are glad about that and are hoping it helps. They have referred Jimmie to a Gastroenterologist who will follow up on Jimmie's peristalsis issues. He still has his appoinment with the Neo on Sept. 3rd.

Jimmie's reflux is severe enough that he's exhibiting signs of Sandifer's syndrome. This is a set of physical symptoms that are basically a reaction to GERD (gastroesophegeal reflux disease).

"The classical symptoms of the syndrome are spastic torticollis and dystonia. Nodding and rotation of the head, neck extension, gurgling, writhing movements of the limbs, and severe hypotonia have also been noted."

Rachael started noticing how he whips his head side to side. and writhes. She looked it up an got pretty freaked out. She didn't at first realize that this syndrome didn't actually have a neurological component and is just a reaction to GERD. This syndrome is not life threatening, has a good prognosis and goes away when the childs reflux goes away. In her talk with the Dr. this morning she said, "so Jimmie's exhibiting signs of Sandifers..." And the Dr. goes, "yeah, we know." *sigh* My reaction, "you could have told her that so she didn't have to have her stomach in her toes, feel pukey and be crying last night about it." I was able to look it up and explain it to her so she could fall asleep. But seriously . . . .

So what now? We wait . . .We pray . . .We hope . . . Where can the medical staff go from here? They still have a ways to go with the Prevacid, but if that gets maxed to no improvement they would probably start talking surgery. The Fundo procedure. It can work. It can work well. But it can also stop working and or not work at all . . . That's the last thing we want is for Jimmie to have surgery and it not work.

We really really crave your prayers right now for our sweet Jimmie Jim Jim. The kid has been through enough. We want so badly for this to turn around. We really want him to take his bottles happily and not be puking his guts out and in pain.

I seem to be having a bit more trouble keeping my chin up about this the last few days, so forgive me if these posts are a bit pitiful. We have so much to be thankful for and God is so faithful. Please pray hard for Jimmie, but also for all of us close to him. We need to have grace!

Love,
Amber

P.S. Thank you Liz from the UK for your comment. Rach uses any info from all of you who have been there-and is grateful. She would love to speak to anyone who had a child at home on an NG. She could really use the support and experience of those that have been in the trenches. please email her at racheudaly@yahoo.com Thanks to everyone for your love, prayers and comments!