B-A-C-K-W-A-R-D-S

Guess what the title of this post means? Yup, we have taken a few giant steps backwards with Payson. Here is the latest:

Yesterday, Payson's blood counts began to drop thus he began looking pale and acted lethargic, (even for a baby who just had major abdominal surgery). Then they noticed his G-tube was leaking...ARRR. Considering his GJ was a size 17 and the tube they placed on Monday is 14 something was bound to come out. When they checked his stomach contents they noticed that what they had been feeding him for the past few hours was still in his stomach. So feeds were stopped last night and they will let him rest today then try again tomorrow. His stomach is also distended, but doesn't seem to be of great concern. As one of the surgeons put it, "he needs to turd a bunch". I told this surgeon I was overly impressed with his vocabulary! Love Dr. Katz! Payson's surgeon did throw a knife into my heart by saying, "I want you to remember that I went on record to state I didn't think it was wise to do the surgery before he'd completely healed from the pneumonia". I smiled and shook my head saying I know. He is right and maybe I pushed too hard this time. In my defense I did have several other doctors pushing with me not understanding why the hold up.

Throughout the night last night his stats would drop causing concern. So they decided to change his trach to a cuffed one. A cuffed trach has a balloon on either side so that no air can escape upwards, (thus preventing any sound at all). By doing this it is allowing the ventilator to deliver the correct settings to his lungs. He is breathing a little on his own, but when they lowered how many machine breaths he'd get he immediately began to retract, (where he is breathing real hard), so they moved the setting back. This cuffed trach is supposedly temporary until Payson begins to feel better. So, I still have hope he will have sound soon!

As I type Payson is getting a blood transfusion. I truly believe that he will begin to feel much better afterwards. He looked so pale and his hands were as white as his sheet. They did some blood cultures but those can take anywhere from 24-48 hours. A gram pos. infection (these are typically strep throat, severe cold) has been detected in the trach, so they are beginning antibiotics to head that off. So, we wait to see what grows in his blood. Until then we do know that our discharge meeting, SFC (24 hours stay at the hospital) and discharge have all been cancelled. We now have no discharge date and really can't plan on a date until he is back on his home vent. That might take a couple more days! ): So, the earliest we could come home would be 2/1. Did you hear that? Don't worry about that it was just my heart breaking of chronic disappointment. We understood that this could happen, but hoped it wouldn't. I just wanted this one thing to be "easy". Oh, well.

Please pray that we can still come home sometime next week and that Payson heals quickly! Thank you all!