Fin's Surgery

Phineas had surgery yesterday, May 6th, to reverse his ileostomy and reconnect his small intestine. Everything went well. He looked great before he went into the procedure at 1:30 in the afternoon and he looked great when we saw him back in his room at 6:00 in the evening. He was intubated during the operation but when we saw him, there was no breathing tube, and he was doing fine on his own. The doctor said all the internal tissue looked good and clearing the old scar tissue was the most time-consuming part. But he used the same incision as before and Fin tolerated the whole thing very well.

The only down side is that they were unable to save the ileocecal valve. This is a small sphincter muscle that regulates the flow between the small and large intestine. Without it, Fin will have some digestive issues as he grows and the possibility of bacterial overgrowth and backflow from the large intestine into the small. These things are manageable, but not ideal. We are a little bummed about it, but considering all Fin has been through, it seems a small price to pay.

The next steps are bowel rest for a few days, pain regulation, fever watch, and making sure he's happy and comfy. Phineas is a real trooper and despite the numerous challenges in his ten months of life, he continues to improve. We are so glad he has the fighter's spirit. It has certainly helped him so far!

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!"

Not So Fast

Ben wrote:

Fin had a great nine days at home. But it became clear on Wednesday night that he just wasn't himself. His heart rate was elevated and his fever spiked. He wasn't smiling. We tried to get him to see his pediatrician, but when his fever went higher, we opted for the emergency department. Sure enough, he was admitted to the Pediatric ICU and put through a battery of tests. He got a fluid bolus and loved that... his fever went away and his temp came down. He looked happy and we thought maybe he was just dehydrated. But it turned out that his IV line for his TPN fluid had an infection. Not surprising. That's one of the reasons they don't like to send patients home with an IV. Anything, even under the most careful watch and ideal conditions, can set off a line infection. So, they treated him with antibiotics and he responded and it looked like smooth sailing.

But this is Fin. Shortly after moving him out of the PICU, he started coughing. I don't want to point fingers, but, let's face it, I don't have enough fingers to point at everyone with a cough, and one would have to be going in my direction, too. So on top of his emergent condition, it now appears he has some kind of virus. Good news is it's not slowing down his progress on his feeds and the doctors are still pushing him toward the door. We should be out of there soon, depending on what shows up in his swabs. It could be a cold, flu, residual RSV, something bacterial, none of the above, or something totally different. We will wait and see, but I'm glad that in the midst of this, his sweet little smile has come back.

And, tests are in. No RSV, no Flu, no viruses. He simply has a cough. They'll give him a couple more days of antibiotics, and then, home!

Home, Sweet, Home

Jess wrote:


Hello everyone! I've been saying it's time to do a Fin update, but I surprisingly haven't had the time to organize my thoughts. ;-)

We arrived back at home late Tuesday afternoon, March 2nd. I don't even mind the old house smell, haha! Rory, our Aussie was very, VERY excited, to say the least. It's amazing how weeks worth of hospital living can make mail and dust pile up! We all did the best we could and look where we are now!

A super nurse came out to the house Tuesday evening with Fin's IV nutrition and meds for the week. She showed me how to use his IV pump, mix the vitamins and set up his IV. Quite a process! We are so thankful it's available for home use considering the alternative! Our home nurse, who's pretty great, will be coming out to the house to do blood draws off Fin's IV line twice weekly, change his central line dressing, as well as any additional assessments as needed. We'll also have speech and physical therapy weekly. I have a journal to record Fin's weight, in's and out's, sats, etc, and then I email his doctor (such a great guy) with this info. That, in addition to the bloodwork will help us make changes as needed every few days. On top of this stuff, I get to do real nurse-y things like flush his IV, care for the ostomy, measure, measure, measure and RECORD. It's a lot, but it does make a person feel pretty important, haha! Otherwise, we're settling in, finding a routine with Fin and the girls and working on staying HEALTHY!!!

We are so appreciative of your prayers, happy thoughts, well wishes and good vibes. Stay tuned for updates!


"What lies before us and what lies behind us are small matters compared to what lies within us. And when we bring what is within us out into the world, miracles happen" Ralph Waldo Emmerson