those with a really weak tummies feel free not to read. **
Hey Transplant buddies. How common is throwing up?! Is it just a reaction to coming off the steroids or is it something more. Once in a while I can see, but Misky hasnt really been her since the ER visit and the pneumatosis/c-diff battle.
She throws up once if we're lucky every other day. Given her history I"m a mess. Shes LOST a lot of weight. Looking like she'll end the year weighting less then this time last year!. Feels which I know not to be true. But inside feels like its all being brushed off.
Two weeks ago we met with the nutritionist. She said to cut out all water in her diet. Add cream to anything and everything. Make her go 2 hours between eating. In hopes she'll gain weight.
We also talked about giving her a pill to make her hungry. Its not that shes not eating or doesnt really want to. Its every time she eats a big meal for her * half a slice of pizza for instance* she doesnt keep it in.
Her high for weight has been 13.7kg shes now 11.5kg.... breaks my heart watching this happen to her. I dont pick her up under her arms in fear I might break her.
Will is pass I ask my self. Is it just something to do with the taper? does it have to do with all her past tummy things? is there a kink or blockage? will she be ok?
Shes still her cute self just not active almost at all. Feels like when she was going down hill waiting for her heart.
I'm asking those who are willing to fast for her on Sunday and to say a little prayer she'll start gaining again.
2 months ago
5 comments:
Ok, I know that every kid is different but Kaidence threw up EVERYTHING!!! She did this multiple times a day and night. Didnt matter what she ate, how fast I ran the pump or anything. Hence, the G-tube we have now. The puking lasted a long time. We are talking maybe about 1 year post tx. I swear we never had any clean blankets (and you know how many blankets you collect from being at the hospital). That first year was rough. Kaidence has done much better, but we have struggled since the rejection episode in August. We have cardiology tomorrow and I am afraid to weigh her. We also tried the magic eating medicane, but with K it didnt work. Hope that your outcome is a little different. Just remember that every kid is SO different anyhow. Just do your best, thats all we can do. If they ever discuss the G-tube with you......Its awesome. Dont be afraid of it.
Owen is a puke monster and I'm so used to it, it doesn't phase either of us anymore. We have the wonderful Gtube to help things out. I'd try to give her lots of small meals and snacks instead of big meals.. that might help with the volume. Owen loves when I make him blended drinks (like Jamba Juices) and I can put anything in there to pump up the cals. Maybe she'll drink that/ You can also freeze them and make popscicles out of them. Good Luck and we'll say a prayer that she starts gaining.
I have a grandson who was otherwise healthy until he contracted C-diff about a year ago and was hospitalized for several days. He was 8 months old at the time, and weighed around 17 pounds. Well, now he's 20 months, and still doesn't weigh 20 pounds. He throws up fairly often, but not as often as Mariska. The doctors at Primary's can't really pinpoint anything, but it seems to go back to the C-diff episode. He eats fine, but he doesn't gain. Now he's labeled as "failure to thrive" since they can't come up with anything else. I hope you find an answer, and I hope we do, too!
PS - You don't know me, but I link to your blog through the friend of a friend. Hope that's okay!
Hi
My name is Jenna and I came across your blog. Mariska is cute. She is a brave courageous fighter. I am sorry she is not doing well. I get sick a lot too and it isn't fun. I lose a lot of wheight too. I have a terminal disease. My site: www.caringbridge.org/visit/champ291
Dang so sorry!! Boo to the pukes!! We have been free for a while (knock on wood) so frusterating. Kylie was doing that same thing..... what pill do they want to put her on?? I will swear by the periactin stuff. Like I said it's been a week and she is down a pound already!! Got the refil today LOL Before it Kylie would go ALL day long and want bites of food, now she wants meals plus snacks its crazy Dr P said the side effects are not bad to be on it long term, I am hoping after the Fontan it won't be as bad?? Grrr the whole no water things makes me MAD!! Same thing with Kylie no water, make her starve, yadda yadda yadda, wish they could take them for a week to see how hard it is to deal with a grumpy hungry toddler :0) Kylie gets constipated with out the help of juice/water plus I couldn't go all day with out water so I am not a stickler on that, then again the periactin helps her catch up on the food thing. Wish I has a good answer for the puke issue, makes me feel so bad, we try so hard to get them to even eat, then when the do they puke it up??? Doesn't seem right huh??
You are doing an AWESOME job and are a GREAT MOMMY, Misky is so LUCKY to have you for her Mom!! Just keep swimming, just keep swimming thats what we do is swim, swim, swim. Lame way of putting it lol but thats how I look at it!! I will send any info down your way if I find it :0) Good Luck!!
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