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!
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