HEmery or anyone else who has dealt with perfs

daphne814

Can you give me an idea of what to expect here?  They put in the drainage tube yesterday and the plan is to leave it in for a few days and keep an eye on the drainage, then clean it out and remove the tubes and hope that the perf just heals on it's own.  If it does, then they hope that it doesn't cause any scarring. If they notice a blockage from the scarring, or if it doesn't end up closing on it's own, they warned me that he will need surgery to take that part of his intestines out.  Can you share with me how this went for you so I can get an idea of what to expect?  So far, he has drained 7ml right when they inserted the tubes and then 9ml more overnight.  When I called to check on him this morning they said he was just having minimal draining now, so I'm hoping that's a good sign.  Any advice you can give is so much appreciated!!  TIA

Denesdia

We didn't last long after the drainage tubes were introduced, as the drainage was running green and foul.  DD's vitals were also tanking simultaneously, so her whole body seemed to be fighting the infection.  After an X-ray(?) of the abdomen, we found that the bowels were already dying and DD was rushed into surgery.  She lost 1/3 of the total length of her large intestines and had an ostomy placed.  I think the length of the bowel damaged as well as the location of the damage is very important for the long-term health issues.  DD had the ostomy reversed prior to discharge home. DD was a 25 weeker and her total NICU stay was 96 days.  GL, mama!  This is tough stuff. 

HEmery

Walker was transferred from another hospital on the 1st of December and had his first surgery on the 14 of that month. He had the drainage tube and at first it was fine. Clear, nothing abnormal. Then one night when the nurse was checking his stomach is was green, which isn't normal. He was put on three different antibiotics, seen by the infectious disease team and no one could figure it out. They had the surgeons come by just to get an idea and get to know him. They had said surgery, then changed their minds and on the day of the "emergency" surgery his stomach was so red and distended that it was apparent something was wrong. I think he had an upper GI before that and they could tell that the dye had stopped but then started again.

He had 8 centimeters removed and a hole stitched up. He had an ostomy bag for 2 months and then went back to have a strictor removed and have his intestines put back together. 

I can tell you this: Our little guy was in so much pain that on the second day after surgery, he was awake and moving and you could tell he felt better. 

 It's been a very long and hard road for us, but thankfully Walker is doing amazing!

Natalie_may

We jumped straight to the ostomy.  5cm of intestines were removed and he had an ostomy bag for two months.  They did a lower GI before the reconnection to make sure that everything was working well.  Hang in there, its not easy, but it might just be what makes them feel better.

daphne814

Thank you guys so much for sharing your success stories.  My DH has been struggling with staying positive, and I read these to him and it truly helped.  So far Ryan is still draining some fluid from the tubes.  It's yellowish brown and they noticed flakes of bowel, but they were going to have the fluids tested yesterday.  They are hoping that since they can't see the hole/tear in the u/s that it must be a pretty small one and hopefully it will just close up on it's own without any scarring.  I'm praying so hard that this is just what he needed to feel better, like you said Natalie_may. 

After the procedure, his lungs were having a harder time keeping his oxygen saturation levels up, so they had to go back to the nitric oxide treatments.  It was helping and he was showing a lot of improvement by the time we left, so hopefully that was what he needed for his lungs. 

 I feel like we are juggling so many issues all at once, I just have to pray for everything to heal and for him to keep fighting and hanging in there.  He's doing such an amazing job so far.  Thank you again for sharing your stories, I really appreciate it!