Since Friday, a lot has happened. I was told, through the resident, that our surgeon was on vacation, and the other surgeons weren't willing to operate on his hernia because he wasn't there patient. Well, I came unglued then. I try very hard to not lose my marbles while I'm in the hospital, but I wasn't ok with that answer. If the hernia truly was causing the problem; I wanted it gone now. After much visiting (and possibly a few tears on my part...I'll never tell) with the charge nurse; she called the surgeons and brought them directly to my room. After chatting with them, I realized it was a communication error. Yes, they didn't want to operate on him, but it was because they didn't know what to do with the hernia. It didn't have intestinal involvement (it's filled with fluid from tip of his shunt), but because it was pressing on the esophagus, they didn't know what would be the best answer for Matthew. He is a "fragile" child, and they didn't want to cause more harm than good. I completely understood. Communication is a brilliant thing! Our surgeon wouldn't be back till Wednesday, and we would talk then.
Saturday and Sunday were pretty much lazy days. Nothing new happened over the weekend; and we talked about dismissal Monday. Matthew's retching had improved and we were comfortable with him being home, and figuring out where to go from here once we were settled.
Monday, as meds were being ordered, dismissal papers signed; Infectious disease doctors walked in the room. Matthew had developed a cough that morning, and he was really mucousy. They took a listen to him and said that they thought he had pneumonia. A chest x-ray was done with a comfirmation of pneumonia. Twice now this little boy has skirted dismissal! They doc's wanted to keep him another couple days to see which way the pneumonia would go, and give him (yet another) IV antibiotic for a few days before we switched over to oral antibiotics. I reluctantly agreed. I didn't want him to get home and get significantly worse. By evening he was on oxygen anyway.
Yesterday we were able to visit with palliative care again (they've been wonderful...I would suggest ANYONE with a chronically ill child...even if don't have a child as fragile as Matthew....to get in touch with them...they are fantastic) and discuss our desires and wants for Matthew. They helped encourage the medical team to allow us to go home. Not that they have been against it; but it just works so nicely to work with a team. So today, barring that Matthew doesn't change his mind, we are getting outta here! 29 days is too long!
