Back in Bangor :)

After a two week stay in Boston, Phineas was allowed to return to our home hospital. They made some changes, some tweaks in his overall care, and got him over the lung infection and kidney issues without having to use dialysis. Which, of course, made us all extremely happy. The doctors and nurses took good care of Fin and were in frequent contact with the staff in Bangor. They had very good things to say about the team at EMMC, which made us very happy, because they have been fantastic to us and Fin.

The main reason Fin went to Boston was to meet a team of gut specialists and see if they could come up with a plan on his feeding issues. We are happy to report that the prognosis is very good and the next step will be reconnecting his intestines. The overall feeling is that we should get his colon working again and see how things go. He's still getting TPN and might for a while, but he's on track to reverse the ileostomy and start down the road to near-normal babyhood. It's pretty exciting, and we feel good about things, even if he has to remain in the hospital until the day of surgery. The doctors want to make sure he's in a place of good health before they operate again. His kidneys, which took a major hit due to dehydration, might take some more time to normalize, but his response to the treatment has been amazing. It's great to see him looking happy and cute again. I think he's happy to be back in Bangor, too.

The latest......

Boston seems to be a good place for Fin. He's seen a lot of specialists, and they're coming up with a plan to treat him. We feel he's in good hands. So much so, that while the doctors and nurses took care of him, we hit the town with the girls and Mimi and Papa and had a ball! Lots of food, lots of walking, lots of sightseeing. The girls loved the New England Aquarium, and we had so much fun in the city that we felt guilty leaving poor Phineas in the hospital. But it was good for Jess to get out of the same four walls and get some fresh air. Now she knows of a few places she can shop...

There are many issues for Fin to deal with as we move along, but nutrition still remains the number one focus. They are still very optimistic that his gut can eventually return to normal. It will be a process, but there are many eyes watching him, and now we are armed with more information, a better idea of his tolerance for changes, and emergency numbers for the rough patches. As he improves, we'll have more conversations about the plan.

Also, due to the effects of severe dehydration, his overall kidney health is in question. It can take up to 12 weeks for kidneys to normalize after a bout of tubal necrosis, and Fin's kidneys were already compromised in the first place. But the kidneys, especially in little people, are very forgiving and resilient organs, so we don't know where they'll level out again. But that's not the major issue. His gut is the focus, and that's the key to his health as he grows.

But let's focus on now. He had a decent wakeful period today and has shown signs of being ready to come off the vent. His numbers are looking good, he's making good urine, and he's flashing those big, bright eyes and raising his expressive brows at all the nurses. He's also fighting the breathing tube a lot, and thrashing around like a madman. He's a little tired of being stuck in his bed. The plan is to extubate him soon if he doesn't do it himself first. It's hard to keep Fin restrained, and he's not even mobile yet. The kid has some spunk, that's for sure.

Off to Boston!

Looks like we're going to Boston. Fin has kept dumping out his food instead of digesting it, which left him quite dehydrated. Enough so that his kidneys are doing very poorly. He was obviously super dehydrated, so they gave him the appropriate amount of fluid to help him out. He has all this fluid on board now but he's not quite peeing it out. The body's response to being too acidic is to hyperventilate and blow off the carbon dioxide. Well, Fin's not quite doing that either. That's why they put him on the vent to manage his respirations with the machine. And that seems to be working, for now. There's a big balance to try to achieve with Fin's short gut. We have to find the right amount of so much nutrition by his tummy and so much from IV. When we exceeded Fin's limit by gut, he just started pouring out his ileostomy. So when we pulled back, he didn't. The doc described it as making changes while driving 80 mph on ice. We originally came into the hospital on Saturday morning to just get his pH back in balance with adding sodium and stuff. Then we found out he was in acute renal failure. That's the way it seems to work with Phineas. Bring him in for one thing to unearth something more serious. But that's o.k. We feel like he'll be o.k. We'll see what happens!

Progress is Progress

Jess updates:

As it turns out, Phineas will need TPN longer than originally expected. He was scheduled to come off it altogether in a week, but now they are upping his dose. He lost some weight, became quite dehydrated, and his ileostomy output increased. All this leads the doctor to believe that he's not absorbing fluid and food as well as he should, and his nutrition and TPN balance is in question again. He said Phineas has been making progress right along, and while this is a setback, it's not an unexplained one. This is the way it goes for shortish gut kids. It's all about the nutrition. Everything else will fall in line. We need to find the right combination of IV fluid and calories for him to continue growing until they hook his intestines back together. The doctor said we should look at this as fifteen steps forward and just a handful of steps back, since it's amazing Fin grew at all considering he's not using most of his plumbing, including the parts of his colon that absorb fluid.

Fin's also been exploring some foods! He hasn't quite grasped the swallowing and tends to want to protect his airway primarily. But he likes bananas, carrots and oatmeal the most. Hey - progress is progress!"