Friday, April 12, 2013

Kudos to the brave boy - Los Angeles Family Photographer

Endless kudos to Reuben today. 

The story of this tube this week goes something like this.
1. An 8.25hr stint in the ER to attempt to change his leaky tube ending in failure since none of the Drs were familiar with his particular brand of gtube.
2. A return visit only to discover the tube was actually slightly the wrong dimension.
3. A third visit which ended up excruciating for him despite a local anesthetic. The common brand actually deflates and inflates with a balloon mechanism, but the Entristar button is based on a tripod device. To insert, you have to close the tripod and to allow it to stay put, the plastic tripod is opened up inside him stomach. Getting out the old leaky one and replacing it with the new one, my heart bleeds for him. Pulling out hard plastic and then pushing plastic through a stoma in his stomach, utterly painful notwithstanding his learned very high pain threshold...

He came home in good spirits. We read a great deal and cracked on with his oral feeds. He's taking about 200ml of formula by mouth at each feed, 6 times a day. We'll continue to consolidate until he's down to a manageable number of feeds per day, but bearing in mind a year ago he was still fed through the night on bolus feeds, life has got a whole lot easier. I'm just sad that he had to go through this today. His patience, especially for a highly intelligent boy such as he is, is quite remarkable. 

Let's hope this yearly button change is one of the last and that one day in the not too distant future, he can continue to grow and thrive without a feeding tube.

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