G-Tube Adieu

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. Please scroll down and read the next post! Jimmie's 21 Month Birthday Post!

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!

Dear Jimmie - Happy 21 Month Birthday

Dear Jimmie,

Happy 21 Month Birthday!

This you right after you were born.

And this is you today! (This is the very funny face you've suddenly started making!)

Look at how you have grown next to your Rottweiler Puppy!

Look at how you've grown in your father's hands!

Here is your special "Watch Me Grow Montage"!

Make an on-line slide show at www.OneTrueMedia.com

You have gained 11oz this month! You are 17lb 11oz.

Your height has increased 1/8 to 31 1/8 inches long!

Your head is 18 inches around!

You have 123 followers on your blog Jimmie! That's 3 more than last month.

Your "Faithfulness" Video Montage has been viewed 13,879 times. That's 565 times this month!

Your "Jimmie's Wonderful World" Montage has been viewed 973 times. And your "High Places" Video Montage has been viewed 683 times!

Your blog has been viewed 3,007 times this month for a total of 113,765 hits! You have a lot of very cool people who love to check on your progress Jimmie.

Your g-tube removal date is this Tuesday, November 16th!!

Physically you are doing great. You are jumping on the beds and furniture and you love to turn on the radio and dance to the music. You are pointing to many body parts and you will climb up in your chair when you want to eat. You love to watch your momma cook and you "help" her sweep, fold clothes and change the laundry over.

You have 9 teeth and are working on your 2 bottom molars right now.

Unfortunately you've started having night terrors, especially when you are over tired. You scream, cry and twitch. It's hard for you to settle into peaceful sleep. There isn't much mommy or daddy can do to help except try to get you to take a good nap during the day and sometimes you refuse to nap. This bad cycle of you being over tired and then having night terrors which makes you, mommy and daddy very tired is driving your momma crazy! She is trying to remember- "this too shall pass."

You are saying, "momma" and "dadda" and learning 2 or 3 new signs a week. You learned the sign for "Grandpa" recently and are very excited about that. You love to be read to and you will bring books to your mommy all day. You only sit for a few pages though before you want to move on to a different book.

This month we had a photo shoot out on your land with my kiddos. It was fun!

You also went on the annual church hayride!

Your daddy's cousin took these next 2 pictures!

You loved jumping on the trampoline!

Here you are with your momma and dadda!

You also helped Grandpa Rod prepare to lay some cement in your daddy's shop!

And you dressed up like a Dalmatian Puppy on Halloween for Trick-Or-Treating!

(There is another post coming with the rest of the Halloween pictures in a few days.)

Jimmie, I love writing you these letters and keeping this blog for you. It helps me feel a little more a part of your life. The truth is, I don't get to see you very often. Especially during cold and flu season. If I dwell on how little we get to interact with you it makes my heart hurt and tears come to my eyes. So instead I choose to focus on the good! How amazing you are doing and how important it is to keep you healthy. I know some day we'll have sleep overs and campouts and there will be no reason to stay away from you!

I love you so much!!

Auntie Amber

Big News!

Jimmie had an appointment on Friday with his Development Pediatrician Dr. H. Rachael and Dr. H. talked about a lot, but the best news is that he is going to write an order for Jimmie

to

get

his

G-Tube taken out!!!!!!!!!!!

Rachael thought he would balk at taking it out right away, but I think Dr. H. respects Rachael's mode of operation surrounding Jimmie's g-tube and he understands where Rachael is coming from. It's no secret that most of the medical professionals that see Jimmie are not entirely happy with his weight gain. Most of them would have Rachael use to the g-tube to get more calories down him to help bulk him up. But Rachael has documented how when she feeds Jimmie through his g-tube he takes in less by mouth. In fact if Rachael were to feed Jimmie 4 ounces through his tube he has proven over and over that he'll take exactly 4 ounces LESS by mouth that day.

As you all know Rachael has worked tirelessly to prevent Jimmie from becoming tube dependent. I think that could have happened easily and she dodged a huge bullet by being so incredibly stubborn and independent. She spent many hours researching tube dependency, feeding issues, tube weaning etc... She found that the US doctors mode of operation where these issues are concerned was not the road she wanted to go down. She adopted a much more European mindset when it came to feeding. She found advice and support from the Graz Clinic in Austria and from a tube fed/tube weaning group on yahoo.

Rachael also found support from Dr. H. He was the 1 doctor here in the city who agreed to help her tube wean Jimmie. He also referred Jimmie to an amazing OT!

The arguments for Jimmie keeping his tube go like this:

1. He needs to gain more weight it would be a good way to get more calories down him.

Answer- He will take less by mouth creating a scenario where he is not self regulating. Tube feeds increase as feedings by mouth decrease. This is the road back to tube dependancy.

Extra notes- His height growth curve looks great as does his development in most other ways. He is not "failure to thrive" he is just really skinny. He also takes in an acceptable/normal amount of calories a day by mouth. And back when he was mostly fed by the tube, he did not gain weight very well and spent a lot of time puking his feeds.

2. What if he has a nasty illness this winter and stops eating/drinking?

Answer- Why would you treat him different from the normal toddler in this scenario? If he needed it he could be hospitalized and given an i.v. for nutrition. Rachael would not allow any sort of tube feeds in that scenario. Jimmie has gone 4 months eating and drinking everything he needs on his own and longer than that taking in most of what he needs.

The way I see this whole thing is like this:

Jimmie developed a really bad case of reflux after he was taken off oxygen. During that time he associated drinking/eating with pain, so he stopped. While trying to get his reflux under control his medical team put in an NG and were not concerned at all with possible tube dependancy. They did not take any steps to encourage Jimmie to eat by mouth as he had been doing since he began feeding in the NICU.

Rachael felt uneasy to say the least with the whole scenario, but the damage after a week in the hospital on the NG was already done. The reflux treatments were not very effective either. Jimmie was now well on his way to tube dependancy.

Rachael started doing her own research and enlisted the help of a naturopath for Jimmie's reflux. She took Jimmie off the reflux medication and began to treat his reflux with diet and nutritional supplements. She followed a very strict diet designed to help Jimmie with suspected food allergies. This diet purified her breast milk and Jimmie's reflux began improving.

Then she set out to wean him from the NG. With the help of Dr. H. and an amazing OT they gave it a very good try, but they could not quite get Jimmie off of the NG. They decided perhaps the NG (irritating his nose and throat) was the problem and made the hard decision to get the g-tube with the hopes that it would assist in the weaning process. Sure enough- 3 weeks after the surgery Jimmie began to eat solids. A few months later he began to drink liquids again.

This has been a long hard road, but it could have been much longer and much harder were it not for Rachael's tireless advocating and Justin's support for Jimmie in his medical care. Rachael is well aware that there are some children whose circumstances necessitate a tube fed life for a few years. She now has a taste at what those parents go through to take care of their children and she has the upmost compassion and respect for those families. She just knew that Jimmie's problems were not severe enough to warrant that road and she stuck to her convictions in the face of many in the medical community who were telling her the opposite.

So we are rejoicing in this latest victory in Jimmie's life!

I won't lie- Rachael is a little nervous to let this go completely. The g-tube has been a kind of a "peace of mind" option to fall back on. She knows in her head that is not what she would fall back on, but it's still a little scary to let it go.

We don't have a date for the removal yet, but you'll hear about it when we do!

Praise God!

Love,

Amber

P.S. Happy Halloween! There will be a fun post with pictures of Jimmie in his costume coming soon.

P.S.S. Jimmie's toe is healing- just slowly. Keep praying for it!

Still Struggling

Well I just talked to Rachael again and Jimmie did not eat dinner last night and he's not eaten much to speak of yet today. As the morning has progressed it's become more clear he's still in pain and the toe isn't really better. So please keep praying.

Love,

Amber

P.S. I gave the blog a make-over. (-: Hope you like it.

Prayers Needed For Jimmie

Update: (Thursday morning 10/28)

Justin took the first shift with Jimmie last night so Rachael slept for about 5 hours or so until 3:30am. During her shift Jimmie was really restless, but not screaming in pain like the night before.

This morning he seems happy and the red swollen hot area on his toe looks a little more concentrated so hopefully it is starting to heal. Poor Rachael did have nightmares about the worst case scenarios all night long. We were laughing about those fears this morning, but the whole thing has been worry making for Rachael and very painful for poor Jimmie.

Thank you for your continued prayers!

Update: (Wednesday evening 10/27)

Jimmie was put on an antibiotic and Rachael is soaking his toe in salts and applying a salve. Please pray that he sleeps better tonight and it heals quickly. I'll update again in the morning.

Thank you for praying!

Yesterday Rachael noticed one of Jimmie's big toes was bugging him. It was a little red and a little swollen. In the night it got much worse and no one really slept. Jimmie is in A LOT of pain with a very obviously infected big toe. They are on their way to Urgent Care now. Please pray this can be taken care of quickly. Poor little guy. Rachael really has no idea how this happened.

I will update later . . .

Love,

Amber

Fall Photo Shoot- By Jimmie Gravitt

I have not gotten to write a post here in a while. So I convinced auntie to let me tell you about last Friday.

Mommy organized a fall photo shoot with my cousins out on our land! Mom invited Cole and McKenna, told them to wear orange, told them to bring their pumpkins and camera- while she got a hay bale, more pumpkins and mums.

We started in a place that had too much sun and shadow, but there were still some cute shots.

That's because I am skilled and I don't squint.

Yes- I'm workin it, different angles and everything.

My cousins on the other hand. Oh my gosh!

Okay so this one is not too bad.. Enjoy this picture because I believe it's the only one where both Cole and McKenna are lookin at the camera and Kenna is almost smiling..

Cole open your eyes! McKenna look at the camera! See! Just like me.

Okay good Cole! BUT McKenna!

Lets try again, this is fun! Oh dear!

So then mommy and auntie thought we should move to a different place with more shade.

This spot was PERFECT for pictures, but my 2 cousins still couldn't get it right.

Guys, look! Just look at the camera and smile!

Like this!

Oh for crying out loud . . .

I'm done- I can't work like this!

That's right- it's time to go solo..

Watch and learn oh cousins of mine.

What!!?? We have to try the 3 of us again!

You got to be kidding. This is just not happening.

Ok, maybe if I touch her head she'll look up and smile..

Um- nope . . .

Alright that is it! I'm throwing my pumpkin!

That's right- I'm officially finished.

Get me out of here!!!

Ahem, yeah- I kind of lost it at the end, but I can only take so much. I mean I gave mommy and auntie lots of good material. It's not my fault that Cole and McKenna are not as highly trained in the art of looking cute for the camera.

Lets end this post on a good note.

I just know you enjoyed lookin at these awesome pictures of little ole me. And just so you know, Cole is better behind the lens.. That's right- he takes awesome pictures. And McKenna- well she's very photogenic when she doesn't know her picture is being taken.

And one more thing, I do have hair- believe it or not! It's just very very blond.

That's all for now,

Jimmie Jim Jim