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.
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
6 comments:
Oh groan groan groan! I can hardly read this. Poor baby! The Teenager was on Baclofen with no side effects as I recall and really helped her back pain. Praying!
Crossing fingers and toes and my eyes... praying that helps and just plain praying.
Such trickiness! I am praying for you guys. I hope your sweet girl will keep sitting tight & smiley!
Love, Bree
Lots of prayers. Hoping the Baclofen is working!
I hope the new med works! It's so frustrating to have to add another med to the list. I will keep praying!
Oh how right you are! compatible with life, it was everywhere for 4 glorious days. It is so nice to be around people who "get it!" I know you know!
I am so praying for Emily. But I know what you mean about the gagging and retching.
We are on 60 % EleCare feeds.That is 5 oz. 6 times daily. When we make it to 7 oz. 6 times daily we can get off TPN. The 8 hours a night is managable. I travel with Annabel by myself and all her supplies, machines etc. When we left she was on 2 IV antibiotic and TPN and feeds 6 times daily, cathing, breathing treatment. It was nice to have her all to myself. For more than a year now we have had nursing mostly around the clock. We snuggled and slept together. Maybe one day you and I can meet up and hang out with our girlies! Please keep us posted on your sweet Emily.
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