I've spoken with Rachael 3 times today.
Phone call #1- We discussed how frustrated and discouraged she is with Jimmie's eating by mouth. Yesterday was a very hard day. Jimmie absolutely refused to even look at his bottle or his sippy cup. He became hysterical by mid-day and continued on into evening extremely hungry and frustrated.
Dr. H. said this morning to give him a break. Rachael told Dr. H. her feelings, which are many . . .
She's feeling like Jimmie can do this, but won't. She mentioned that so far their best day has yielded only 25% of what Jimmie needs to take in. Putting the tube in and out is very hard on everybody, but especially Jimmie. My mom and Kathy cannot even stand to be in the room and choose not to if possible. It's painful. Dr. H. encouraged Rachael to wait and see what this new OT he referred them to will say on Thursday, but Rach has spoke with her at length on the phone and Rachael said that *she said*-if a kid will not take in what he needs to grow on, a g-tube is needed. Dr. H mentioned he could schedule a g-tube surgery if Rachael wanted him to, but he encouraged a little more patience that he did not feel like we are quite "there" yet.
I told Rachael I felt there were many reasons why she might choose to get a g-tube among them being taking the psychological and physical pressure off of Jimmie, Rachael and Justin. But Rachael insists she does not feel a peace about that yet. She just does not want to go that route, yet doing what they've been doing seems tortuous to her. So basically Rachael is not happy with any choices right now. She often expresses how many kids she knows of (in an online community for tube weaning) that wean and have had and have many more physical problems than Jimmie has ever had.
So- the end of that phone conversation was me saying you have to choose a path and relax into it. And Rachael still in a hard place emotionally.
Phone call #2 - A nutritionist that both Dr. H. and this new OT (they will see on Thurs) recommended- came to the house to meet Jimmie and speak with Rachael and Justin. She came in and really was exactly what they needed this morning. Her point of view is that some kids do wean the way Dr. H. has been attempting to do it. Once the tube is out they quickly pick up their volume and it is clear it's going to work. Other kids (Jimmie apparently) do not pick their volume up enough, become very stressed and the more hungry they are the less likely they will eat.
So she recommended that Rachael skip two feedings in a row in a day and work with him during that time giving him whatever solids he will take and of course offering him drinks. Then she wants Rachael to give Jimmie some water in his tube. The hope is that this will encourage just enough hunger, but not too much to where he becomes hysterical and shuts down. She wants to do this slowly- 1 day on 2 days off I think is the plan. (comment and correct me if I'm wrong Rach).
Rachael was decidedly "up" and feeling a bit better. That was exactly what she needed this morning. A refreshing hope filled perspective with a new plan. That is exactly what this nutritionist offered. Thank you Lord.
The only thing about this plan is that it assumes/hopes that Jimmie will do well *with the tube still in*. We are quite sure that causes some kids to not want to swallow. Jimmie has had some success in the last week drinking with the tube in so hopefully that won't stand in his way.
Taking the tube "in and out" certainly hasn't been a great scenario.
Rachael did mention however that Jimmie had thrown up on her this morning and she wasn't sure what was going on, but something wasn't quite right.
Which leads me to:
Phone call #3- Rachael took Jimmie's temperature around noon and it was around 100.6. So Jimmie has a fever and has thrown up this morning. He has been drooling a lot so it's possible it's teething, but we kind of doubt it. Rachael and Justin will watch him closely and my mom will no doubt go over and apply TKM as she does weekly for Jimmie.
If he is sick that is another indication that his little body is just not handling the aggressive weaning tactic of pulling the tube for 12 hours. This will be the second time they pulled the tube for 2 days in a row and both times he has gotten ill.
SO- pray . . . it's all overwhelming. Rachael and Justin and their outlook and stamina, Jimmie and his little mind and body and for direction and peace...
I'll update again later if Jimmie gets worse, please pray he doesn't!