We are home

Yes, we have been home for a little over a week now and it is so great. Being in a hospital for 34 days was exhausting, not that we did much but emotionally it was draining. All of the ups and downs and no diagnosis was horrible. Zach was so sick, and the reasons we went into the hospital never even got addressed due to unforseen circumstances that kept popping up.

We went through 3 surgeries, 3 anesthesias, 2 central lines, a blood infection, numerous x rays, a heart echo, a blood transfusion, a night in PICU, a horrible virus and the whole time with fevers of 103-105. We got discharged when the fevers broke, no growth on the blood cultures and to come back in a few weeks to have his motility test done. He does go back on May 24th for his motility test, we have to be there at 6 am and he stays overnight hooked up to the machine measuring his stomach and intestinal contractions. Hopefully we will have some answers after all the testing is done.
Even with all still going on, he has been doing pretty well. He has gained 3 lbs in the last few weeks!!! That is amazing and we are so happy. He has been 22 lbs for over a year even with g and j tube feeds and now being on TPN 20 hours a day he has gained. He is now 25 lbs!! We never thought we would see him with chubby cheeks and little fat arms or not being able to see his ribs. So even though he has to play in the yard pulling around his little blue bucket with his tpn (milk) and pump in it, he is soooo happy.

Thank you so much to everyone for all the prayers and thoughts during our hospital stay.