A lot has happened since my last post about Jimmie's g-tube!
Rachael received this letter of referral from Dr. H.
"Dear Dr. S.
I am referring James Gravitt to have his G-Tube discontinued as he is no longer using it. More specifically, his mother discontinued using the G-tube in mid-July, and James even managed to continue oral intake though a gastrointestinal illness in August. He is maintaining his height growth. While he may be falling off a little in his weight growth, mother professes she is unlikely to resort to the G-tube. Rather she will optimize even more the food choices she is offering (wheat germ, peanut butter, fortifying his milk, etc.) as he does eat pretty well.
Removing his G-tube now, before the winter season seems more prudent than waiting.
Please give me a call if you have any questions or concerns."
Sincerely,
Dr. H."
Rachael was a bit chagrined at this letter. She wasn't sure she liked how it read. It seemed to place it ALL on her. I laughed out loud when she read it to me. I told her to take it as a compliment. Dr. H. respects her. He did not try to talk her out of this line of thinking. He did put the responsibility squarely in her lap. I'm sure he has to. This is not the normal mode of operation with g-tubes and kids like Jimmie. (here in the states-anyway) I think Rachael has reconciled herself to the tone of the letter. She has fiercely advocated for her son. She has done all of her own research and found a doctor who would work with her not against her. This is what she wanted and she got it. I think there was just a little bit of last minute second guessing herself. Of course that's understandable, but she does not need to doubt this!
So Jimmie was scheduled for g-tube removal November 16th!
Amazingly the last few days have just served to encourage her and bring her peace with this decision.
First and foremost - Jimmie has been eating like a HORSE!! AND-- he's gaining weight!
Second - His g-tube has been having trouble. It hasn't been rotating like it should and Jimmie hasn't wanted Rachael to touch it at all. On Friday it started coming out on it's own. Justin refilled the inner balloon thing with a few mls of water and tried to get it back into place. Friday night Jimmie had a horrible night. His g-tube was making him uncomfortable, the stoma looked really red and inflamed and by morning it was starting to come out again. So Rachael called in to the clinic and they gave her permission to take it out herself and dress the wound/hole. They told her to keep his removal appointment so they could check everything out and make sure the healing process was starting properly.
Unfortunately Justin was at work yesterday so Rod and Kathy drove out to help Rachael remove Jimmie's g-tube.
Here it is before . . .
It's gone! There is a tiny hole in it's place . . .
All bandaged up!
Here is Jimmie holding the g-tube . . .
The end!
This is so exciting for us! While Jimmie's time in the NICU was relatively easy, his reflux and resulting eating issues once he was home were very very challenging. The months of Jimmie screaming in pain and refusing to eat were probably some of the darkest months of Rachael's life. A lot of stuff caved in on her during that time including hormonal/mood issues, post traumatic stress and extreme exhaustion. Exhaustion that was not only physical, but also emotional. A complete weariness of fighting what felt like a constant state of crisis involving her child. And all this while still trying to recover from enduring the death of her daughter only 8 months before the crisis with Jimmie began.
Rachael sent me her thoughts about yesterday:
"I did not realize how aware I was of the tube. It is so freeing to not have to worry about it when he slides off the couch, or when I pick him up, or when he is naked. I don't have to watch him constantly making sure he's not pulling at it. It has been a great day. I thought I would be apprehensive and scared. I wasn't!! I was so happy and proud of Jimmie at how hard he has worked and how much he has overcome. We had the G-tube for less than a year! I let Jimmie run around today without a shirt! I know it sounds silly, but it was huge for me. When I see him eat and drink I get teary because he is eating! We take these things for granted until they are taken away. As we were preparing to remove the g-tube I explained to Jimmie what we were doing. The process did not seem to bother him at all. He has been very happy and comfortable today."
It feels wonderful to say "goodbye" to the g-tube! It is symbolic I think to that time of Jimmie's crisis. I am so grateful to our Holy Father for His presence, His leading and wisdom for all of us during this. God is truly our Shepherd!
Love,
Amber
P.S.S. Little Gideon is being released to go home with his mommy and daddy tomorrow!! After 16 weeks in the NICU he begins this new part of his journey. Pray for Reghan, Kaleb and Gideon as they adjust!
