Sounds like we may be heading in the direction of a G-tube for Olivia. I'd been fighting this so hard, but now that I've gotten over my rebellious, stubborn phase, I think we are ready to start discussing it. If you remember, back in September when Olivia had a swallow study and she aspirated everything, the person who performed the study said we could either re-test the next day or put in a G-tube. Because I didn't think that was necessarily her decision, and I thought her tactic was a little abrupt, the rebel in me came out and I decided Olivia would never have a G-tube. Now that I've gotten over myself, and realized it's not about me, we are thinking a G-tube may be what's best for Olivia. After talking with the feeding therapist from yesterday, our speech therapist, and our pediatrician, we realized that Olivia aspirating may actually be causing her constant respiratory issues. If not a cause, it definitely could be hindering her health. It's hard because she's obviously been thriving, but her lungs are her main medical issue, and without her lungs being healthy, it's kind of pointless to worry about her eating issues. It's very possible that a G-tube could help make her a healthier, happier little girl (although she's pretty darn happy already). Zac and I are going to go talk to her pediatrician in the next couple of days and make a game plan. Any thoughts or suggestions from any of our PICU friends??? We are looking for any input...
5 years ago
6 comments:
julie-
ok, here's my input on the whole gtube subject. I don't think it would be a bad idea. Like you said, a gtube could decrease some of her respiratory issues. Also, she may not have to have the gtube forever. Maybe as she gets older, her swallowing will improve. If that's the case, she could simply have it removed.
Julie, think of all the hurdles that Livvy has overcome in her short lifetime. There were times, when many of us were very worried about Livvy and her outcome. Yet, through it all, her strong will has gotten her through everything that she has faced.
You guys are a fantastic family, and many people admire your strength. I think if you just stop to listen where God is guiding you, you will find the answer.
Bethany, PICU
Well, I have no advice to offer on this one! But you know me, I can always lead you to another good blog. http://newkindofnormal.blogspot.com is written by a mom of a special needs baby who has tons of feeding issues (much more severe than Olivia) and she has quite a following of other moms of kids with gtubes. You might find it interesting or you might find some useful links from her blog.
Well, my expert opinion is, Oh, wait, I have none. All I can offer is prayers. So that's what we'll do. Good luck making your decision.
Julie,
You know that we struggled hard with ventilation for months...we thought Izzy would have to be trached. But once she was off the vent we tried oral feeds maybe 5-6 times before I insisted on a swallow study. I was terrified that she was aspirating and she was. Aspirating is dangerous!I'm surprised the doctors let Olivia go this long without a g-tube considering her lung damage but on the other hand I know the strength of a mother's will. LOL! Remember the heart and lungs work hand in hand too so if her lungs improve so will her heart function. Izzy has managed to stay healthy and out of the hospital because she has one. A little dehydrated? No problem. Bolus a little pedialyte :) You'll find that Olivia will fair better than the rest of your family with illnesses because you can keep her hydrated. Meds taste yucky? No problem!Besides, the need for a g-tube isn't forever. If you ever want to chat, I'm here.
Julie,
I've never met you but feel like I know you! I'm mom to Benjamin and Kimmie. (Suzanne had Benny for speech) Kimmie has many disabilities. She has a g-tube now and like you I fought getting it. She has made lots of progress since getting it. She is unable to take anything by mouth as she aspirated everything...we even thicken her g-tube feedings! (more for reflux...) I'd be happy to talk with you if you'd like.
Hi Julie,
This is Zac's cousin Linda. I used to bill for enteral feeding to MN Medicaid, and I know there are LOTS of stipulations for when it is payable, for how long, etc. Talk to Olivia's casworker early and often to be sure all the hoops are properly jumped thru. I'm sure you're already on that - everything I hear about Olivia has been amazing!
Linda
Post a Comment