It seems like so much happens but there's so little I can report. As my parents say, things change from phone call to phone call. And it's true, it's been a real roller coaster. The major ups and downs lately have had to do with Fin's diagnosis and how to treat him. The doctors in Bangor determined that Fin has tracheobronchomalacia. They performed a bronchoscopy with a flexible scope and it showed pretty serious airway floppiness as well as weak bronchial openings. Basically, unless Fin's own work of breathing keeps his airway open, he has obstructive apnea. This is not a great scenario, obviously, but it is treatable and there are things that can be done to help. But first, the Bangor team wanted the Boston specialists to take a look at him.
So Fin was flown to Boston, where an ENT specialist, a pulmonary specialist, and a cardiologist took a look at him. And while the opinions varied day to day, and his overall condition apparently improved dramatically all by itself, they all agreed that the tracheobronchomalacia appeared to be a major part of his health problems. The question was what to do about it. The best treatment, C-PAP (positive pressure into the airway) is the usual route, but Phineas does not tolerate C-PAP. He always opens his mouth and lets the air out, so it doesn't help ventilate him. Everyone agreed that the thing to do was to bypass the problem, and that meant a tracheostomy.
However, no one could tell us definitively that a trach needed to be done. It could help, but as they kept looking at Fin and going over his numbers, everything just looked so good.... not like a kid that needed a trach. It always came back on me and Jess to decide, and that was a tough call to make. We couldn't see putting a hole in his throat if it wasn't going to fix the overall problem, even if it helped out somewhat in the long run. Besides, as he improved, it looked less and less likely that he needed a trach. He had a few oxygen desaturations overnight on a couple different occasions, but nothing to write home about. It began to look like we might get the specialists two cents and then a trip back home.
Then Fin began to act up. Coughing. A slight temp. Quick desaturations. He was up to his same old tricks. In a way, we were slightly relieved, because it became clear that we didn't end up in Boston for nothing, and they got to see what we have been dealing with for months. Then his blood CO2 began to rise, and the doctors suggested C-PAP. Jess shook her head. She said mark her words; he'd be intubated before the night was over. And she was right. He couldn't clear his secretions or keep his O2 saturation up, and C-PAP didn't help, so they put him on the ventilator at about 1 am.
All this made up everyone's mind. Fin needs a tracheostomy. It will help stent open his airway temporarily and allow for easier ventilation instead of constantly needing a breathing tube. It will allow him to grow and sleep better and keep the CO2 out of his bloodstream. It will feel like a setback, but hopefully, it will allow him to get better long-term. Unfortunately, we have to wait until he's over this respiratory infection that he came down with while we waited to decide (how Phineas) before they can do the tracheostomy. Maybe we waited too long. Maybe all the watching and mulling over the options allowed him to get sick again. Maybe he would have gotten sick anyway. This is his pattern. It feels like a kick in the pants, but it's how Phineas is. As one of our nurse friends said, he'll get there. He just likes to take the long way.
And finally, on June 24th, he had the surgery. He already looks better. For one thing, you can see his whole adorable little face. Go Fin!
Friday, June 25, 2010
Tuesday, May 25, 2010
Up in the Air
Three days at home.
Dang.
The issue is with Fin's breathing again. He's happy and doing great while he's awake, but as soon as he goes to sleep, the trouble starts. His bronchioles get plugged with mucous and that causes him to work overtime to breathe. The first night at home was fine but the second and third were spent making sure he was getting air. Sometimes, he wasn't. So we took him to the emergency room at 3 am on Sunday.
No one is sure exactly why this happened. One of the doctors said it looked like an asthmatic event, which we sort of expect due to his chronic lung disease. Many people have suggested allergens or irritants in our home air. It could be time to take a serious look at changes in our house. One of the main things we can do is lower the number of pets. This makes the most sense, but it's a hard decision to make, for many reasons. The girls don't want to lose their cats. I don't think we could possibly part with our dog. Part-time, trial-basis relocation of the animals is a possibility. We just aren't sure. For now, we have HEPA filters in two rooms and have replaced the carpet in the living room with a new floor.
After Fin was admitted to PICU, they started doing blood work and respiratory viral tests. The CO2 level in his blood was 117. It should be around 40. They put him on constant nebulizers and he started to look better. He was awake, clapping his hands, and having a grand old time. The doctor whipped out his camera phone and took a picture. He couldn't believe a kid with a CO2 level that high could possibly be laughing and enjoying himself. He wanted to document the moment to confound his medical students. By lunchtime, Fin's heart rate was normal and his CO2 had dropped to 59.
So he went to bed and we went home. In the morning, he was working to get air again and his CO2 level started to climb. He had another rough night trying to breathe and plugging up. His lung X-Ray looked better but he was all junky and wet with thick mucous secretions. They suctioned him constantly and put him back in his little nebulizer tent, this time at a higher dose of medication. He slept fitfully in there, struggling with everything from his chest PT to his medication. Everything indicated that he was fighting something, his CO2 level, bone marrow, heart rate, all the numbers were off. And again, when he woke up, he was happy, smiling, laughing, saying "Dadda". He had a bath and Jess dressed him while they continued to suck yellow junk out of his airway. The kid must really like the hospital or hate his parents, I don't know which. Either way, we need help! Fin needs help! He needs to breathe and sleep!
Dang.
The issue is with Fin's breathing again. He's happy and doing great while he's awake, but as soon as he goes to sleep, the trouble starts. His bronchioles get plugged with mucous and that causes him to work overtime to breathe. The first night at home was fine but the second and third were spent making sure he was getting air. Sometimes, he wasn't. So we took him to the emergency room at 3 am on Sunday.
No one is sure exactly why this happened. One of the doctors said it looked like an asthmatic event, which we sort of expect due to his chronic lung disease. Many people have suggested allergens or irritants in our home air. It could be time to take a serious look at changes in our house. One of the main things we can do is lower the number of pets. This makes the most sense, but it's a hard decision to make, for many reasons. The girls don't want to lose their cats. I don't think we could possibly part with our dog. Part-time, trial-basis relocation of the animals is a possibility. We just aren't sure. For now, we have HEPA filters in two rooms and have replaced the carpet in the living room with a new floor.
After Fin was admitted to PICU, they started doing blood work and respiratory viral tests. The CO2 level in his blood was 117. It should be around 40. They put him on constant nebulizers and he started to look better. He was awake, clapping his hands, and having a grand old time. The doctor whipped out his camera phone and took a picture. He couldn't believe a kid with a CO2 level that high could possibly be laughing and enjoying himself. He wanted to document the moment to confound his medical students. By lunchtime, Fin's heart rate was normal and his CO2 had dropped to 59.
So he went to bed and we went home. In the morning, he was working to get air again and his CO2 level started to climb. He had another rough night trying to breathe and plugging up. His lung X-Ray looked better but he was all junky and wet with thick mucous secretions. They suctioned him constantly and put him back in his little nebulizer tent, this time at a higher dose of medication. He slept fitfully in there, struggling with everything from his chest PT to his medication. Everything indicated that he was fighting something, his CO2 level, bone marrow, heart rate, all the numbers were off. And again, when he woke up, he was happy, smiling, laughing, saying "Dadda". He had a bath and Jess dressed him while they continued to suck yellow junk out of his airway. The kid must really like the hospital or hate his parents, I don't know which. Either way, we need help! Fin needs help! He needs to breathe and sleep!
Friday, May 7, 2010
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!
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!
Friday, April 23, 2010
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 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.
Monday, April 12, 2010
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.
Tuesday, April 6, 2010
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!
Thursday, April 1, 2010
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!"
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!"
Monday, March 15, 2010
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!
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!
Saturday, March 6, 2010
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
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
Wednesday, February 24, 2010
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.
Thursday, February 18, 2010
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.
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.
Thursday, February 11, 2010
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.
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.
Sunday, February 7, 2010
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?
Saturday, February 6, 2010
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...
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...
Friday, February 5, 2010
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!
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!
Thursday, February 4, 2010
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. ;-)
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. ;-)
Tuesday, February 2, 2010
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. :-)
So....we're hopeful and Fin's pretty happy. That's a very nice combo these days. :-)
Sunday, January 31, 2010
Ben's turn....
You can tell this is Ben writing; he refers to Fin as 'dude' :)
"Fin continues to improve in many ways. He's really making great strides. Blood pressure, heart rate, lung function, tone and color, all look good. He's on a lot of different medications and low-grade fever is an issue, but that's to be expected. It's not uncommon in surgeries like his to take a "second look" and see if everything going on in his gut is working for the best. He may have extra fluid, he may have abscesses, he may still have an infection. They aren't going to push his ventilator settings and try to get him off the breathing tube anytime soon... he's showing signs of not needing it as much, but there's no reason to push him, considering everything he's been through. It's quite amazing to see him awake and aware, opening his tired eyes and smiling around his breathing tube. We look at this little bundle of miracles and think, dude... why are you smiling? Don't you know what you're going through?! But that's always been Fin. Through each hurdle, through every trial, going to the brink and back, he's been a happy baby. I have always held on to that."
"Fin continues to improve in many ways. He's really making great strides. Blood pressure, heart rate, lung function, tone and color, all look good. He's on a lot of different medications and low-grade fever is an issue, but that's to be expected. It's not uncommon in surgeries like his to take a "second look" and see if everything going on in his gut is working for the best. He may have extra fluid, he may have abscesses, he may still have an infection. They aren't going to push his ventilator settings and try to get him off the breathing tube anytime soon... he's showing signs of not needing it as much, but there's no reason to push him, considering everything he's been through. It's quite amazing to see him awake and aware, opening his tired eyes and smiling around his breathing tube. We look at this little bundle of miracles and think, dude... why are you smiling? Don't you know what you're going through?! But that's always been Fin. Through each hurdle, through every trial, going to the brink and back, he's been a happy baby. I have always held on to that."
More from Jess - 1/31
He had a great night, he was awake for a good portion of yesterday, starting to fight his ET tube. These are good signs. He had a bit of a fever and a slightly elevated heart rate last night, but the docs aren't too excited about it either way. He's truly holding steady. The surgeon came in to see him yesterday as well and he said the ileostomy looks great. His belly circumference went down a bit. All good signs. Thank you for the Fin blog! He's such a cutie pie! And an amazing fighter to have made it this far!!
Saturday, January 30, 2010
Had a good night
I hear he had a good night last night. Let's keep sending them prayers! I'll post any details I get.
~Tina
~Tina
Friday, January 29, 2010
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Yes, it started as RSV, then a secondary bacterial infection in his lungs. Then his blood cultures came back with a bug growing somewhere. Then his pH was acidic. So it pointed to his huge swollen tummy. The plan was at first a compartmental decompression, but the films showed air outside the bowel. Surgery. An hour into surgery they called ... See Moreus out to let us know that a very large portion of his intestines had died and there was a lot of infection, gangrene, to be cleaned out. Gave us 3 options. Two of them being horrible. We ended up in middle ground, with the surgeon taking out all the stuff that wasn't viable and leaving marginal tissue with the hopes that it would get some profusion and come around. When he went back into the OR, much of the marginal tissue had pinked right up and was getting a pulse. So he ended up taking 30 inches of small bowel, which was much less than anticipated. Now we wait and watch his pH, hoping they don't have to go back in for anything other than reversing the colostomy. He's been pretty touch and go, but mostly pretty stable with lots of help.
Goes without saying - thanks for the prayers.