26/2/17 – Day 75
Two days post surgery (I think… he went for surgery Thursday evening and didn’t come back until early hours Friday so I’m not sure how to count it yet?)
He’s stable. Oxygen and vent rate are down a bit. Blood gases are okay and he’s much more active today, not really awake but wriggling around a lot in his sleep. He’s still not happy with handling and desats if he’s touched but I think that’s to be expected after major abdominal surgery.
Today big brother Reuben has been to see him. He brought a special book with him to read to his baby brother, it was very sweet 🙂
So, update. Arlo was in theatre for over double the length of time this time round. We were okay for the first 2ish hours but after that every second felt like a week. We finally got the phone call to say he as out around 1am. The Doctor gave us a rough overview of what he’d had done but told us the surgeon would speak to us in the morning.
We sat down with the surgeon on Friday and he explained he’d had to go straight home when they were finished because he was exhausted. He said things were much worse than they’d expected and it wasn’t just a singular issue, there were 3 different problems and it’d been a very difficult job.
Firstly, they found a stricture near the opening of the stoma so that was pulled through slightly and refashioned. The second much more time consuming problem was that the small bowel had multiple ‘extensive’ adhesions. He described the small bowel as being essentially ‘frozen’ because it was so stuck together. They’d had to spend a long time picking it apart. The final issue was one none of us were really expecting. During the first operation the surgeons hadn’t had to touch the colon at all, they’d noted that it looked a little inflamed but this time they found that unfortunately a few areas have necrotised (died) as a result of the NEC. The surgeon said he’d been unable to remove them during this surgery as he believes had he attempted to do so, Arlo would almost certainly have bled to death.
Further surgery will be needed at some point to remove the areas of dead colon but for now he didn’t seem to think it would cause any immediate issues and he said full rest to allow it to recover as much as possible is the best thing for everything down stream of the stoma at the moment.
He told us very clearly that Arlo’s recovery will be very long and progress will be very slow. He will require further surgery and it’s also possible his ileostomy may be permanent. He said the damage the nec has caused is extensive, amongst the worse cases he’d seen and that this was the most difficult surgery he’d carried out in the last year.
The last 72 hours have been a bit of a whirlwind and it’s been a lot to take in and try to get our heads around. There’s so much I haven’t included in this update because I’d be here for hours but suffice to say, our feet have barely touch the ground since Thursday. We were transferred back to the Women’s NICU last night and now the dust has started to settle I have about a million questions ready for when we see someone from the surgical team tomorrow, I’m not entirely sure I’m ready to hear the answers though. I’m terrified the stoma won’t work, like last time, and really worried about further adhesions.
We’ve just got to keep everything crossed and hope for the best now. Arlo’s still fighting and we owe it to him to do the same. I don’t think I can find the right words to express just how proud we are of him or how blown away we are by the way he’s fought through every obstacle placed in front of him. I know I’m biased but almost everyone who meets him falls in love with him, his determination and fighting spirit are infectious, he’s a very special little boy and we’re so so incredibly lucky to have him 💛