Birthdays and other things to celebrate :>

Ben wrote:

Yesterday we had a meeting about Fin; it went pretty well. There were about a dozen people there, from our home health nurse to Fin's pediatrician. They think he's really making progress, and they have a plan to get us home in five days, maybe a week. He's got to get off some medications that he can't be on at home. So that's a five day process. But that is the only thing keeping him there. It still remains to be seen how much of his food he will be able to digest and absorb, but he IS growing, so that's good. He now weighs what he weighed before his surgery. Jess changed his waste bag all by herself today, and said that it was a piece of cake! Speaking of pieces of cake, we had a birthday celebration for little old me in the hospital. The whole family was there, my brother and his three kids and my parents. And, of course, the Fin man. A good time was had by all! We wore the dude out, I think, and he slept like a baby all night.

Update on his IV thingy

Ben wrote:

Well, Phineas has had a pretty good week. They took the IV out of his leg and put in a more long-term one in his chest. It was a surgical procedure, quick and pretty routine, but it didn't stop us from worrying non-stop through the whole thing. He can actually come home with it so we can give him IV nutrition while his stomach heals. This will be an ongoing process.

On Tuesday, we are meeting with a bunch of doctors to discuss the home transition. That means education for us, but it also means we're getting closer to having him here. It will be nice to have the baby back to match the house full of baby stuff. We are all very lucky.

Jess just went up to the hospital to spend the night (or maybe the next several nights) with him... he's out of intensive care and on the regular pediatric unit. Next stop, home.

More Fin updates

Fin just might be the happiest sick kid you ever saw.

He still needs lots of medicine and care, but he's making progress. Mostly, he's just so darn cute and happy all the time. That can go a long way! The doctors are actively weaning his oxygen and upping his tube feeds. He seems to like both quite a bit. We are still weeks away from anything resembling normal, but we do like to celebrate the little improvements. Next week, the surgeon is going to put a central line in his chest which will give them better access for his IVs. They tried to put a picc line in his arm this week, but he's had those things before, and his little body didn't want to cooperate. Poor kid got poked and prodded for almost an hour before they gave up and decided to have it placed surgically. Oh well. Another bump in the road for Fin.

Here at home, the girls are suffering through the worst bout of cold symptoms yet. Lydia missed three days of school. Ruby's red eyes ran with big globs of goo. They both developed this horrid cough that has lingered for days. I'm thinking Fin is probably better off right where he is. This cold just might have put him in the hospital anyway.

Thanks for continuing to check in on us and pray for us and keep us in your daily thoughts. It's slow going and we don't always have big news to report, but we still marvel that Phineas has made it this far. This is the only life he has known, and he likes to keep us all on our toes.

Okay, my turn :>

We got to visit with Fin today, and he was such a happy guy. He got some well needed rest and when he woke up he was all smiles. It was great to see Ben and Jess so happy, and seemingly relieved after all that has happened over the last couple of weeks. The little man continues to make progress, and was alert and content. How 'bout some pictures?

Off the vent

Ben emailed:


The doctors kept saying that yesterday was going to be a good day. We were really hoping that would be the case since the day before was a bit of a roller coaster ride. That kind of sums up life with Fin, actually. As soon as we arrived at the hospital, the doctors were all gathered in his room and they were going over a bunch of things. Turns out he did, in fact, make some progress yesterday. The highlights:

They determined that he most likely does not have a bowel obstruction. Good news, but he's not quite ready to take food yet, either. This is going to be a slow process.

They figured out the cause of his fever. He has a yeast infection in his tummy. This is probably the source of his fever and high white count. They have a specific antibiotic to treat it, but it can harm the kidneys, another one of his problem areas, so they are being cautious.

They decided that he no longer needs the ventilator. They took out the breathing tube and we got to hold him, like, really hold him, for the first time in a week and a half. I'd like to say that went well, but he was clearly upset the whole time. We weren't sure if this was because of his surgery or something else. They put him back in his bed and he fell asleep fitfully. He was working hard to breathe, so they thought he needed some more help. They tried C-PAP, to give him the extra pressure, but he didn't tolerate that well, either. A lot of this is due to exhaustion and weakness post-surgery. He's been through a lot, so pushing him a little at a time is the name of the game. Because his lungs are really getting better, he just needs the force of the oxygen flow to keep his floppy airway open. So they put him on the nasal Neptune oxygen machine and cranked the liters, and he liked that. He slept off and on all night, and his body seemed to tolerate this method best. So, baby steps...

A little bump in the road....

So
Fin had a pretty good night last night after a scary day for us! We are
concerned about his intolerance of feedings, his swelling tummy and his
high fever. The surgeon saw him and thinks he may have or may be
forming a bowel obstruction. But he doesn't want to operate, at least
not for now. They've sent more blood cultures although he probably has
antibiotic coverage on board already for any creepy crawler out there.
The docs are kind of mellow about everything - no one's too worked up.
We're just going crazy. All part of the ride I guess. As far as Fin's
respiratory state, they are still going to wean him off the ventilator
hopefully sometime this weekend. Yay! FIn will be glad to get the use
of his arms back! He's still the same old Fin, even with his arms
strapped down and doped up on meds and a tube down his throat. He
smiles at all the pretty girls and his old NICU girlfriends. ;-) Thank
you everyone for continuing to pray for our little guy. He really is a
miracle...but he still needs some work!

Little Big Man update

So....
Yesterday Fin had a CT Scan to check out his belly and they found a little pocket of fluid - an abscess - pretty common - so they went in with a needle to aspirate. I think 12cc's was drawn off, clearish, nothing unusual. Of course, it's been sent for a bunch of cultures. They were happy to not have a drain in. He was pretty worked up with all the medications and moving around, but it really went well, better than we expected. They also ran a dye through his G-tube to see how that was working. It ran through without a hitch. He's getting a little dehydrated, so they're adjusting his fluids as needed. But the food bag has been started, he's being reintroduced slowly. By all accounts, things are working correctly. Now they have to find the right balance of fluids and nutrition, and get him back on the right track. It's now been over a week since the surgery, and he is still surprising us. Hopefully, he'll come off the vent soon, as that tube in his throat is really starting to tick him off. ;-)

More good news from Jess :)

Tina, Fin had a great day yesterday and an even better night last night! When he's awake, he has started to take his own breaths through his ET tube! He stays awake for an hour or more on his own and looks around, giving everyone curious eyebrows and smiling at everyone he can. What a good little boy! He's been taken off the meds to keep his BP from bottoming out and he's tolerating it just fine. Still has a low grade fever which they are blaming on abscesses which have formed in his gut b/c of the nature of his surgery. The plan is to take him to CT scan on Wednesday or Thursday, after they have had ample time to form, locate and drain them if possible. If they are small, they'll let his massive dose of antibiotics work their way into them. There's always the possibility of things looking bad and them needing to surgically go in and look around/assess the damage. But we're hopeful CT scan and percutaneous drainage will work.

So....we're hopeful and Fin's pretty happy. That's a very nice combo these days. :-)