We came home from the hospital last night and so gald to be here. Justin is still not doing great but at least the pain is gone finally. The docs still believe that it is all motility related and have done some blood work to look at mitocondria disorders. We wont have the results back for that for a couple of weeks.

He came home on TPN because we cant get his feeds up to where they need to be. He is usually at 100mls an hr but only able to get him up to 10mls an hour at the hospital. We are to try and increase the feeds 10mls a day. We tried last nigt to go to 20mls but he became to full and had to vent him before he started to wretch. This morning his bag was full of junk so didnt get much in. So I guess this will be a slow process. The docs also want him to try and eat clear diet but not able to get much in because his get full to quickly.

Justin is also on IV antibiotics still for his blood infection. So right now we have three pumps going together oh what fun. I feel like I am going to become a pro on all of these pumps. We go back to doc next week so see what they say.

Finally they started him on zelnorm and erythrocin again. So hopefully they will work this time. He has bowel sounds but still not able to pass his bowels without maga doses of stimulantas. Hopefully it will get better soon. Thanks everyone for their support through this trying time.


Melanie

Melanie so glad to hear you guys are finally home. I hope all these treatments he's getting do him good. Glad to hear the pain is finally gone! Hope it doesn't return!
Hang in there....you guys will get through this.
{{{{{{{{{big hugs}}}}}}}]

Melanie~ That is so great you guys are finally home!

That is super that Justin is pain free and I hope with all the treatments he is getting, things continue to stay pain free..I hope with all the results your waiting on, you get an answer in the end! Big (((((hugs))))) to you both

Oh, Melanie, that all sounds so overwhelming, but you have to do what you have to do, I guess. But you and Justin must be party superhero. I'm glad you're home. That's the first step to getting back to normalcy. I hope Justin starts to make big improvements soon.

I'm glad you're home, Melanie. It has to be better for Justin to be around familiar things. I hope you get all this straightened out before too much longer.

Oh Melanie...You must be so exhausted! Welcome home and I hope that things improve for you guys quickly!

Melanie, I am so glad you guys are home. Please continue to keep us updated. I hope they figure this out soon!

You sure do have a lot on your plate right now! It must be so great to be home but not so great that you are not much closer to knowing what on earth is going on. Poor fella. Three pumps?! I guess sleeping is a bit of an issue if they are noisy? So sorry you and your little man are going through so much.

Wishing you all the best for some increased intake and some answers soon.

{{{hugs}}}

I am so sorry Melanie. I am glad you both are home though and I hope they figure it out soon. Keep us posted!

Melanie... you guys must be shattered. {{{HUGS}}} :hug: I hope that things improve for your little guy and that he continues to be pain free (Yay!!) Hang in there......

Oh' Melanie, I'm so sorry you have gone through all of this yet again. Poor Justin !!! You know I've been there with Noah and I know it can be so very hard to deal with. I'll be in touch with you real soon :)