Saturday, January 24, 2009

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 .

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.

17 comments:

Astriana said...

We're sending you all our love and strength.

Daxton's Personal Assistant said...

We're praying for you guys.

dana said...

We are thinking about you guys. Sending prayers your way.
Dana and Landon

Laura (speaking for everyone!) said...

I am so sorry and heart broken to read this this morning. Please know that we are praying very hard for Drayke- he has already been through so much. We are praying for strength for ya'll as well- can only imagine how hard this is!

thethinwhtduke said...

all of us are praying for you guys. our hears and love go out to drayke.

melissa, adrian, and liam

Anonymous said...

Our thoughts and prayers are going out to all of you, and especially Drayke.

Love you!
Michelle & Brian & David

Erin said...

Sending up many, many prayers for Drayke. My thoughts are with all of you.

Erin

Carla in Canada said...

We are sending all our love and prayers that Drayke pulls through this!

Anonymous said...

Praying hard for Drayke.

Katie

Anonymous said...

I'm so sorry! :( My thoughts are with you guys as always. Stay strong.

inkprincess from LJ

Anonymous said...

Pulling for Drayke and all of you here in Seattle. Strength to you all.

Klinqueen said...

Thinking of you here as well. Sending healing thoughts to your little Dragon!

Sue & Mark

Emily said...

Everyone on LJ is thinking of you. Sending positive and healing thoughts!

Leslie said...

I just wanted you to know that our entire family is praying for you guys. We have been reading your blog for a while.

perplexed01 said...

He has been such a fighter from the start. Our family is praying our hearts out for your little man. Stay strong! - perplexed01 from LJ

Dave Lowe said...

Wow... Lorri, you and your son are in my thoughts. I had no idea, it has been ages since I have seen you and just happened to find you on Facebook. I'm not religious, usually. But I'll make an exception.

When my son Kennedy was born, he spent 12 days in the NICU, he was 33 weeks. I cannot imagine what you are going through.

Sisters Of the Moon said...

I just spent a few hours reading your story! I wish nothing but the best and I hope he can recover from this!! best wishes to you and your family are in my thoughts!

-Shayl
mommy of a 24week twins