Where we go from here

We had TPN clinic yesterday, and I think I left equally frustrated as I arrived. It went beyond the fact that we weren't seen until 3:45, and our appointment time was 2:40. I make appointments for as early in the day as possible when we go to UCLA, because the traffic coming home gets horrid. It took me over 2 hours to get home, and it's only 42 miles.

The good news is that Emily weighed 15.9 kg, which is officially 35 pounds! So her nutritional status is good on TPN, at least it's doing one good important thing.

Her retching and vomiting however are uncontrolled. We discussed a few things, and for now we are going to try Baclofen. The thought is that it will relax the muscles in her stomach, and hopefully ease the retching. As a bonus, it should relax the spasicity and clonus in her feet/ankles. The downside is that it will further relax the rest of her body, which is already low tone. He said that if her drooling gets worse and she's choking more on secretions, we will increase her robinol. So we add a med, which will make us increase another med ... and then he has the audacity to say "She's sure on a lot of meds, we should see what we can discontinue soon". Seriously? Ugh.

If the baclofen doesn't work, we will consider a seperate j-tube. She doesn't tolerate gj-tubes, she vomits bile and screams with j-tube feeds. The thought behind doing it is that at least we could get her meds in her, without them being retched up. We leave her g-tube open to gravity 24 hours a day, except for right after giving meds. We're supposed to clamp it for 30 minutes to let them absorb, but I wait 60 minutes. Even at 60 minutes, a large portion of them drains out.

We go back in 2 weeks. I am crossing my fingers that the Baclofen works, without having too much detrimental effect.

Feeding Is a Nightmare

My Peanut has been fed through her g-tube since she was 10 months old. Prior to that she drank from bottles, but not well. She never took more than 10 ounces a day. Yes, a DAY. And what she did take was in half ounce increments, and it would take 45 minutes to get that much in her. She had low muscle tone in her mouth, and would dribble all over. It was not fun. Then at 10 months she got parainfluenza, ended up on an ng-tube, waiting to recover so she could have a fundoplication and g-tube placement. She was tiny, about 12 pounds. She got her g-tube when she was over the parainfluenza, and she has never eaten by mouth again.

She *CAN* eat by mouth. She can open her lips, she can chew, and she swallows normally. But she will not do it. She is so orally aversive that we are considered feeding therapy drop-outs. She simply can not be fed by mouth. Reflux is a HORRID thing!

Due to her metabolic disorder, she cannot go more than 3-4 hours without fluids. During the morning and day time she gets Pedialyte every 3 hours. Then she is hooked up to her feeding pump (Zevex Infinity for those in the know) from 3:30pm-7:00am. It is such an inconvenience. The reason she is hooked up for SO long is that she has never tolerated more than 50 cc's an hour. That is sloooooow for pump feeding. To give you an idea of how much it is, 60 cc's is 2 ounces. She tolerates less than 2 ounces an hour, by a slow drip. When she wakes up in the morning, she always chokes and gags and retches until she throws up. Then she always throws up her morning Pedialyte.

The GI had this thought that perhaps it was the Beneprotein that was making her throw up. He said that many patients don't tolerate it. My Peanut has always been a retchy girl, but this is worse than ever before. Her formula is a mixture of Neocate Infant, Beneprotein, and Polycose. So we are doing a trial right now. We are ONLY giving her Neocate Infant. She stopped throwing up! We tried it for 5 days, with NO throwing up. She still retches and gags, but no actual vomit. So I added back in the Beneprotein to see what would happen .. and the next morning, she threw up. I took it back out, no more vomit.

AH HA! An answer perhaps! Even better, is that on just Neocate Infant I have been able to get her feedings up to 65 cc's an hour so far. For every cc that I can increase her, it lowers the time she has to be hooked up. It is much easier in the afternoon when she's awake to NOT have her connected.

So that's where we are. I don't think she can stay on just Neocate Infant forever, because we have to lower the volume of formula per water due to her metabolic disorder. She is not getting the full fat of the formula, so we need to add in supplements. I am waiting to hear from the metabolic dietician to see what to do next. In the meantime, we haven't had puke in almost two weeks!!