I am not jinxing anything, but I am so happy that we have been out of the hospital for a whole week!!! This hasn't happened it a while...well like about 2-3 months. A-m-a-zing!!
Zach has a lot of ups and downs this week....pain, vomiting, low grade fevers, autonomic crap but through it all we are still at home.
He has started vomiting and gagging whenever I put his meds in his J tube, then that sets off his autonomic crap...spiking fever, dizzy and lethargy
He has also been having more pain. His psuedo obstruction is really showing its ugly head right now. He was on lortab every 6 hours around the clock to help, but his dr's have changed up some meds this week.
His clonidine has been changed from a liquid form to the patch form that can be worn for 3 days, then changed. Hopefully he will get a more steady stream of medicine this way and it will help more with pain. Also they have started him on Lyrica to help with autonomic dysfunction and pain. So far can't see any difference but we will see. He is still on zofran every 6 hours around the clock. He is also still on his antibiotic (vancomycin) and his fungal (fluconazole) both IV for his blood infection, but they will both end on Monday.
Overall in between his pain and vomiting episodes he has been in a good mood. He gets worn out and tired very easily but we are pushing through. He is doing good in PT, he sees her once a week to work. We have lots of appts next week and hopefully learning some news that has been pending.
We have GI follow up, immunology and surgery follow up to get the biopsy results. The MRI has already been sent to Pittsburgh and so will the biopsy results. They will interpret everything along with the bloodwork and let us know.
And some bittersweet news as well, Zach was approved for Make a Wish. This is awesome in the fact that he will get to go somewhere that we would not be able to go without them but bittersweet that yes, he does a life altering diagnosis.