April 30, 2010

Update: Ambrose & Procedures

Ambrose returned well from his Endoscopy procedure yesterday afternoon. His upper GI tract (esophagus, stomach and duodenum) was viewed and appeared normal. He does have some mild bruising in his stomach, which is consistent with vomiting, and not a concern. He came out of anesthesia with no problems. The doctor had to inflate his GI tract a little with air in order to get the images, so he was a little distended and very cranky for a little while.

Overall, he's been a very happy little boy in the hospital. He spends most of his waking hours playing and rough housing with Daddy, who has been staying with Ambrose most of the day and every night.

Speaking of rough housing, all of Ambrose's big brothers came in for a quick visit last night. Charlie and Ambrose were very excited to see each other and got in to a squealing match. They also waved "bye-bye" to each other. Ambrose had hoped to get a handful of Charlie's mullet while he was here, but Charlie didn't give him an opportunity.

This morning (Friday 4/30) Ambrose had two procedures done. The first was an Upper GI, where Barium was pushed into his stomach through his G-tube. The procedure was done by a Radiologist, who was able to track the Barium through Ambrose's stomach to his small intestines. The results could be seen on a large monitor and showed no abnormalities found in his digestion. Following that procedure, he had a Modified Barium Swallow Study. This test involved Ambrose being seated in a chair next to an x-ray machine. There were 6 different cups set out with Barium of different consistencies. He was then spoon-fed a small amount from each cup. We were able to watch and see if he aspirated or if he swallowed correctly. It revealed that he is able to swallow "spoon thick" or "honey paste" liquids, but not standard liquids. This is the same results as his last MBS, conducted in February, so he hasn't improved much, but he hasn't gotten worse either. He is scheduled for an outpatient swallow clinic next month, and will probably begin intensive feeding therapy after that.

This afternoon, Ambrose's G tube Mic-Key button was exchanged for a low profile G-J button. It uses the same surgical stoma, so this procedure did not require surgery or even anesthesia, only an x-ray afterward to confirm that the tube was properly placed. The J tube snakes through the stomach and duodenum into the second part of the small intestine: the jejunum. This equipment is a new design, so I wasn't able to find an image online (we'll apparently be the first to upload), but it looks pretty much like the former, but with an additional port. The new button enables us to feed Ambrose either into his stomach or his jejunum. In fact he's already trying his first (and hopefully his last) elemental formula, EleCare. If he tolerates it for a couple of days, he can go home. Let's keep our fingers crossed, we don't want to have to go through a whole series of formula trials like before. Once he's fat and healthy, we hope that the doctors will be able to find the root of his problem so we can treat more than just his symptoms.

Also, the results of his biopsies came back mostly fine. There is some acid reflux damage to his esophagus, so the GI doc has ordered Prevacid.

We'd also like to clear something up. Someone accused us of not doing what is best for Ambrose and that "in an effort to please others we lost track of our own intuition and Godly wisdom." This is a very frustrating and arrogant comment. Let us assure you that we are always and only trying to do what is best for our son. This is the reason he's had all the tests done, we've moved on to our second GI specialist, and why we're attempting to stay on top of all his feeding issues. What good would it do us to try and please others if it would harm our little boy? While it's true that he tolerates the goat's milk well, it is lacking key nutrients that will help the growth of his head and the development of his brain. It doesn't provide him with enough calories to gain the weight that he needs to maintain a steady growth curve. It's probably easier to digest than formula precisely because it's half the strength of formula. Right now we need to beef him up fast and the only effective way to do that is with formula. And if the stomach won't tolerate it, we'll have to bypass it to the intestines. But the bottom line is: that boy needs to put on some serious weight, ASAP. We've also discovered that the protein content in goat's milk is almost 10x the maximum that he should have at his size. It would not be prudent for us to take a chance on damaging his kidneys (the risk is high, due to his being born three months early). We are not willing to allow this to happen. Please understand that we are trying to do everything possible to give our child a chance to have a normal life and to learn how to eat healthily. We are always praying about the decisions and seeking to do God's Will for our family. If you have grave concerns on how we are treating Ambrose, then you can call or email us directly.

Thanks again for all the prayers and we'll let you know when we discharge home or if anything exciting happens first.


  1. You guys are doing a great job! Ambrose (and your other kiddos) have absolutely wonderful, smart, caring, and concerned parents. He is a very lucky boy. Keep up the good work!

  2. Ambrose is a happy guy! He is in the best hands that he could be in. There are always choices, and you are going in the right direction. It may be tough for you, but he is in good hands. This will resolve itself, because he is a fighter. God puts us all in situations that may be difficult, but there will always be a good outcome. Dad