Maggie threw up her tube tonight. The 4th time in 5 days. I should be convinced even more that this surgery is a good idea.... I think I would be, except for the conversation I had with Maggie's Feeding Therapist today.
"Did anyone tell you what it's going to be like after the surgery?"
Uh, no. Sorta thought there would be no puke and perhaps the Peanut would start to eat.
Evidently, I am in for wretching and dry heaving that comes out of nowhere. Purple-faced, watery-eyed wretching and probably a very unhappy baby. Probably a baby that will have lost the ground we gained over the last couple of months with all this therapy. Probably a baby who will be CONTINUOUSLY fed in the beginning, and then "hopefully" transitioning to an 8 hours on, 16 hours off schedule. It will take weeks. She will not want to eat. For weeks. "Hopefully" we will be able to get Maggie back on a 5 times per day "bolus" feeding, which is what we do now. "Hopefully" a nutritionist and the surgery team will determine Maggie's volume and calorie requirements before discharge so we sorta know what we're doing. "Hopefully".
But what is the alternative? Let her throw up half of her intake? Let her continue to gain only a couple ounces each month? Worry that the lack of nutrition will affect her motor skills, her communication skills, her cognitive ability? Not much of an option.
Jesus Christ, I simply cannot do this anymore.
Rock, meet Hard Place.
~Sara
19 hours ago
3 comments:
Sara, I don't have anything concrete to offer, except a very un-concrete cyber-hug. I know from our group there are very strong feelings each way about doing fundos. I don't have an opinion either way but is it an option to put the g-tube in and see how she does? I know it might mean two surgeries, but it "might" avoid the fundo and the wretching etc. that comes with it?
Sara,
I can tell you that Brinson at times would reflux so bad that she would flail and turn purple. Would scare the crap outta me. I will forever keep a bulb syringe in the kitchen next to the high chair....and B doesn't have a gtube. With the 3 reflux meds she's on, the improvement is amazing. So, while I know I just probably added to your stress (i hope not!) I just wanted you to know that we made it thru. I honestly think that by removing that NG tube that she may really want to eat now. I know it's a scary thing, but I really feel that the gtube will be a better option for her. Granted it will probably take a little time before things get better...but hey..something needs to change right now yeah? Because the way things are right now...she's already miserable from what it sounds like.
Love you gf...keep your chin up. Im hopin like H"ll that this will be the break you and her both need.
Sara- I have dealt with many kids who have had to get feeding tubes and the nissan (sp?) surgery, and I haven't often seen that kind of reaction. Be prepared for anything of course, but know that not every child reacts the same. I had a student who had been refusing to eat (due to a degenerative liver disease). A week after surgery he was eating a full lunch for us. We were told to only give him his tube feeding if he didn't eat. It really depends on the child. Just view the tube as temporary and that this is something to help her grow. It does take a long time to get children off the tube, especially with kids who refuse to eat due to behavioral issues. However I have seen the best experiences with kids who have parents involved and use their instincts, along with the GI's reccommendations. If you have any questions, please email me.
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