Surgery day 42 & day 43 update ( 6 weeks old today!)

Yesterday Jett had surgery. It took 2 and half hours. When Jade and I went in to finally speak with the Drs we didn't like what we heard.

They opened him up and no bowel spilled out. They dug around inside and found that the bowel was all stuck together. Somewhere along the line, Jett had perforations. They were never seen on the numerous x rays. The contents of his gut had spilled out into the abdominal cavity and over time has formed adhesions. His bowel is all stuck together in a big knot. The surgeons couldn't even tell which end was which. It was also stuck to the abdominal wall and his liver. There is an abscess in the abdominal cavity.

Jett is lucky that he didn't get an infection in his bloodstream.

The surgeons couldn't form a stoma, because they couldn't find any part of the bowel that wasn't stuck. Pulling it apart and trying to untangle the mess would have cause him to bleed out and they would have lost him then and there. They almost lost him just from opening him up and handling him, he required transfusions, he lost quite a lot of blood.

The surgeons ended up putting in 2 drains. 1 in the abscess to drain out the pus & the 2nd one in his small intestine to prevent further spillage in his abdominal cavity. The have also continued with 4 different types of antibiotics to prevent the infection from the abscess spreading into his bloodstream.

My little baby has to get strong enough for the surgeons to open him up again and untangle and unstick everything. They think by the time he is strong enough his bowel would have died and there will be nothing they can do. When I asked yesterday if Jett will survive, Dr D said he had a slim chance.

Today Mum was up and I had another meeting with Dr D. She re capped what she told me yesterday and I think I understand it. I asked her when they think he could be strong enough for the surgery. She said it could take months. So what that means is Jett could remain on TPN (Total Parenteral Nutrition) for months, stabilise, be strong enough for surgery then they could open him up and not be able to save any of his bowel. Without a bowel he can't eat.. He can't live on TPN. I asked her today for a number.. She said he has a 5 - 10% chance of survival..

On top of all this there are other things to consider. Keeping him on ventilation can make his Chronic Lung disease worse. The infection in his abdominal cavity could spread to his blood stream and he could die from that.. It is very touch and go.

Then last night we had post surgery complications. His BP was dangerously low and I was warned he may not survive the night... He did though and today his BP has remained stable. :)

My mind is going a million miles. Jett has to make it, I have to have faith.. But the reality is he may not..

My goals have now changed. I wanted to have him in special care at xmas, now I just hope he's still alive.

I asked Dr D if we were putting him through all this for nothing. She said there is hope, there is still a chance. She said she will let me know if she thinks he is too sick to keep pushing him.

The hardest thing about all this is the waiting. We wont know if his bowel can be saved until he is strong enough to have the surgery (or a contrast). This will take weeks or even months. We wont know if his lungs will be able to handle being ventilated for so long.. If his lungs get so bad he needs high frequency vent and nitric oxide (like he did at first) Dr D will probably suggest it could be time to let go.

Trying to focus on NOW though. He's still alive, he doesn't have a bloodstream infection and his ventilation isn't too high considering his huge operation. Ventilation is: Rate 70, Pip 25, Peep 8, oxygen 42%.

More good news today he had a head scan which was clear and an echo which showed his heart was working well and the duct hasn't changed, so at least that's something..

I'll try and fill in the finer details later, for now I don't have the energy. I have tried to explain this as best I can. It is confusing and difficult to process.