272nd day in the NICU

Drayke is not doing well. Thursday night his temp kept fluxuating and his belly was distending. At 7:30PM he had another seizure that was a lot more pronounced that the previous one. He went from 43 to 50 on his girth within a few hours. An xray and 2 ultrasounds of his belly showed air was in the large veinous areas of his liver indicating bowel problems. He has NEC, Necrotizing enterocolitis .

http://kidshealth.org/parent/medical/digestive/nec.html

This disease is extemely rare in infants his age. Also every other test known to man was run on him & found he has the flu. Gods knows how he contacted it but Dr M stated it is possible for NEC to happen due to the flu, again very rare but thats what we have.

Late Thursday night Drayke was taken to the OR for emergency exploratory surgery to remove any dead bowel. When they got in there he had some greyish areas but no black so they did not remove anything, hoping that the antibiotics he is now on will kill that infection. His nite primary nurse came in on her day off to be with dad & me and she stayed with Drayke until 5AM Friday morning. During and after the surgery his saturations were great until earlier today when the flu finally hit his respiratory system. He is at 100% O2 and they have increased his pressures. His belly is being vented from his Gtube plus one going down thru his nose. Feeds have stopped to rest the bowels so they can heal.

Due to the surgery he is receiving a lot of blood products and is receiving 10 separate IV medications. In the OR he got another central line put in that is having problems clotting off. Due to everything that is going on he is getting a bit puffy but not nearly as bad as he was in mid September.

The latest ultrasound is showing no air in his liver but his heart function is not good. The worst thing that could happen to a pulmonary hypertension baby is happening. He got sick with a virus. I wish is would have been staph or some other bacterial infection. Those you can kill with meds. Viral means he has to ride it out.

God knows what is going to happen. We are praying that today he hit the bottom. If he gets any worse I do not think he can survive. He was doing so great after the surgery last week and all that progress has been lost.

He turns nine months old in four days.

EDIT: I was just informed by a doctor at the hospital that Drayke is going into congestive heart failure. Heading out now.