Friday, August 28, 2009
Thursday, August 27, 2009
Another update
First - I had started a "thank you" post to all our helpers a couple weeks ago. I finally finished it and posted it tonight. But it was posted under the original date. To read it, please go to the Aug 14 post "To all our helpers".
Since my last post, Tom has been doing pretty well - as have his brothers. And as for Tim and me, we're hanging in there.
I was finally able to hold Tom last Thursday. It had been nearly 2 weeks since the last time we got to hold him - before his g-tube/nissan surgery. I held him once in the morning and once in the afternoon. In the afternoon, he smiled at me. It was wonderful.
Tim took over in Indy for a long weekend on Thursday. Tom's ventillator settings and CO2 levels yo-yo'd all weekend and through this week so far. Overall, Tom has been stable. We've just been trying to find that "sweet spot" in ventillator settings that would bring down his CO2 levels - and keep them down. No such luck so far. He had his first trach change on Monday. We can now use some special rubberbands to help keep his ventillator tubing attached to the trach - thereby greatly reducing the risk of his chubby cheeks knocking the tube loose. In addition to the rubberbands, Tom also sports a trach holder or trach ties around the back of his neck, fastened to the "wings" on the trach. (Thank you to Tim's cousin Sue for the trach holder samples!) Unfortunately, the trach ties and the trach itself have created some very tender areas on his neck, but the nurses assure me these will heal and in time Tom will sport his new accessory without any discomfort. Tom was moved to the Infant ICU on Monday night. This is a specialized 6-bed unit where all the patients are infants on trachs. The focus here is development and training - for the patients and their parents. This is definitely the right place for Tom to be.
Before I forget, I also wanted to mention that a couple of the staff here at Riley have definitely earned a shout-out here on the blog. Will is a respiratory therapist that was assigned to Tom before his trach surgery. He went out of his way to get Tom the newer model ventillator that he's currently on. Since then, I've run into Will a few times in the halls of the hospital. Not only has he remembered who I am, but has even remembered Tom's name. He caught me in the hall the other day while I was nose-down in my BlackBerry: "Hey, how's Thomas doing?" Will had only taken care of Tom for one day, but he still remembered him and wanted to know how he was. That's pretty special, if you ask me.
Another person who's earned a special mention is Ann - one of the nurses in the PICU. She was assigned to Tom a couple times, then asked us if it were okay if she requested to be one of his primary nurses. We love Ann. She knows her stuff, is very pleasant, gets things done - and does them on time, and most importantly she spoils Tom. We were sad to leave the PICU because Ann had gone out of her way to get mobiles, music and all sorts of stuff for Tommy. I'm sure Tom misses all of her sweet talk and attention too!
So anyway... Late last week, we got some great news from our insurance company: They've approved a back-transfer to South Bend. This is something that is typically never approved. Once Tom gets on the home vent system (they call it the LTV - short for "laptop vent" because of it's relative size) and is stable for about a week, he can be transferred. This will make things easier on many fronts. Obviously, it'll be easier for Tim and me to split our time between hospital and home when the hospital is only 25 minutes away - instead of over 3 hours away. But more important for the long term, moving Tom back to South Bend will enable our ventillator/home care training to take place in South Bend and anyone else that we'd like to have the same training can participate in South Bend - instead of making the trek down to Indy.
As of this afternoon, the plan for Tom is to make one more change to his vent settings tomorrow morning. The new settings can be replicated on the LTV, so hopefully he'll tolerate the change well. If all goes well, we'll keep him on these settings thru the weekend then on Monday or Tuesday we'll make an attempt at changing over to the LTV. In the meantime, since the variations in vent settings over the last week haven't had much of an impact on his CO2, we're doing one more short course of steroids. The docs aren't convinced they'll make much of a change, but feel it is definitely worth the attempt. He'll be back on "the juice" for 5 days. Hopefully this won't add too much more volume to his already way-too-fluffy cheeks. :)
Though Tom's lungs are among the worst these docs have seen, the docs have all reassured us that he will outgrow much of this. It's just going to take time.
Tim will come down tomorrow to take over for a few days. I'll head home to help Bonnie manage the three hooligans at home, then we'll make the swap again early next week. And so goes our "new normal".
Finally, here are a few pics. Our camera is at home, so I hope to get some more recent photos on the blog this weekend. In the meantime, please enjoy these:
Intubated Tom - pre-trach surgery
Tim & Kristin next to Tommy's bed in the PICU at Riley
Proud Papa Don with Tommy
This is the doll that Tim has affectionately named Patty Picu, due to it's androgenous appearance. Tom's nurse Ann lent us this doll so we could get familiar with how Tom's trach would look and work.
Well, it's very late. Tom is asleep - so I should be too. More to come soon. Thanks for all your positive thoughts and prayers!
Lots of love, Tim & Kristin
Since my last post, Tom has been doing pretty well - as have his brothers. And as for Tim and me, we're hanging in there.
I was finally able to hold Tom last Thursday. It had been nearly 2 weeks since the last time we got to hold him - before his g-tube/nissan surgery. I held him once in the morning and once in the afternoon. In the afternoon, he smiled at me. It was wonderful.
Tim took over in Indy for a long weekend on Thursday. Tom's ventillator settings and CO2 levels yo-yo'd all weekend and through this week so far. Overall, Tom has been stable. We've just been trying to find that "sweet spot" in ventillator settings that would bring down his CO2 levels - and keep them down. No such luck so far. He had his first trach change on Monday. We can now use some special rubberbands to help keep his ventillator tubing attached to the trach - thereby greatly reducing the risk of his chubby cheeks knocking the tube loose. In addition to the rubberbands, Tom also sports a trach holder or trach ties around the back of his neck, fastened to the "wings" on the trach. (Thank you to Tim's cousin Sue for the trach holder samples!) Unfortunately, the trach ties and the trach itself have created some very tender areas on his neck, but the nurses assure me these will heal and in time Tom will sport his new accessory without any discomfort. Tom was moved to the Infant ICU on Monday night. This is a specialized 6-bed unit where all the patients are infants on trachs. The focus here is development and training - for the patients and their parents. This is definitely the right place for Tom to be.
Before I forget, I also wanted to mention that a couple of the staff here at Riley have definitely earned a shout-out here on the blog. Will is a respiratory therapist that was assigned to Tom before his trach surgery. He went out of his way to get Tom the newer model ventillator that he's currently on. Since then, I've run into Will a few times in the halls of the hospital. Not only has he remembered who I am, but has even remembered Tom's name. He caught me in the hall the other day while I was nose-down in my BlackBerry: "Hey, how's Thomas doing?" Will had only taken care of Tom for one day, but he still remembered him and wanted to know how he was. That's pretty special, if you ask me.
Another person who's earned a special mention is Ann - one of the nurses in the PICU. She was assigned to Tom a couple times, then asked us if it were okay if she requested to be one of his primary nurses. We love Ann. She knows her stuff, is very pleasant, gets things done - and does them on time, and most importantly she spoils Tom. We were sad to leave the PICU because Ann had gone out of her way to get mobiles, music and all sorts of stuff for Tommy. I'm sure Tom misses all of her sweet talk and attention too!
So anyway... Late last week, we got some great news from our insurance company: They've approved a back-transfer to South Bend. This is something that is typically never approved. Once Tom gets on the home vent system (they call it the LTV - short for "laptop vent" because of it's relative size) and is stable for about a week, he can be transferred. This will make things easier on many fronts. Obviously, it'll be easier for Tim and me to split our time between hospital and home when the hospital is only 25 minutes away - instead of over 3 hours away. But more important for the long term, moving Tom back to South Bend will enable our ventillator/home care training to take place in South Bend and anyone else that we'd like to have the same training can participate in South Bend - instead of making the trek down to Indy.
As of this afternoon, the plan for Tom is to make one more change to his vent settings tomorrow morning. The new settings can be replicated on the LTV, so hopefully he'll tolerate the change well. If all goes well, we'll keep him on these settings thru the weekend then on Monday or Tuesday we'll make an attempt at changing over to the LTV. In the meantime, since the variations in vent settings over the last week haven't had much of an impact on his CO2, we're doing one more short course of steroids. The docs aren't convinced they'll make much of a change, but feel it is definitely worth the attempt. He'll be back on "the juice" for 5 days. Hopefully this won't add too much more volume to his already way-too-fluffy cheeks. :)
Though Tom's lungs are among the worst these docs have seen, the docs have all reassured us that he will outgrow much of this. It's just going to take time.
Tim will come down tomorrow to take over for a few days. I'll head home to help Bonnie manage the three hooligans at home, then we'll make the swap again early next week. And so goes our "new normal".
Finally, here are a few pics. Our camera is at home, so I hope to get some more recent photos on the blog this weekend. In the meantime, please enjoy these:
Intubated Tom - pre-trach surgery
Tim & Kristin next to Tommy's bed in the PICU at Riley
Proud Papa Don with Tommy
This is the doll that Tim has affectionately named Patty Picu, due to it's androgenous appearance. Tom's nurse Ann lent us this doll so we could get familiar with how Tom's trach would look and work.
Well, it's very late. Tom is asleep - so I should be too. More to come soon. Thanks for all your positive thoughts and prayers!
Lots of love, Tim & Kristin
Wednesday, August 19, 2009
New Photos!
Hi! It's Katie, just thought I would post some pictures of the boys here at home. Hopefully we can post some of Tommy tomorrow!
Tuesday, August 18, 2009
A Good Day for Tommy
Tom had a good day today. When the surgeon stopped by this morning, we talked about what the doc called Tom's "short neck". I told him "short" would be a generous description. :) Tom had some good awake time (during which we "danced" to his Baby Einstein tunes and reintroduced his pacifier - which he LOVES) and some good sleep time. He seems to be recovering well and adjusting to his new contraption. It's just so nice to see him in a good mood. He's even been making eyes and smiling at some of the nurses...he prefers blondes.
We're weaning him gradually on the ventillator. He was at 80% oxygen last night and is down to 60% tonight. We're watching his blood gases closely and using them as a guide to make adjustments on the ventillator. He's still holding steady at 30 breaths per minute, but hopefully yet this week we can take that down a couple notches too.
The docs want to get a solid 48 hours of recovery in before we try to hold Tommy - so maybe as early as late tomorrow afternoon, I'll be able to hold him. We'll see how his day goes tomorrow.
All of your comments are so caring and thoughtful. Thanks for all your support. We'll be in touch again soon.
Lots of love from Indy,
Kristin & Tommy
P.S. I talked to Tim last night after he got home to Henry, Joe & Sam. It had been 2 weeks since he last saw them. Tim's reaction: "They're huge!" :) They're so huge that the pediatrician has approved for us to try a 6-hour stretch at night between feedings. We'll see how it goes...Good luck tonight, Tim and Katie!!
We're weaning him gradually on the ventillator. He was at 80% oxygen last night and is down to 60% tonight. We're watching his blood gases closely and using them as a guide to make adjustments on the ventillator. He's still holding steady at 30 breaths per minute, but hopefully yet this week we can take that down a couple notches too.
The docs want to get a solid 48 hours of recovery in before we try to hold Tommy - so maybe as early as late tomorrow afternoon, I'll be able to hold him. We'll see how his day goes tomorrow.
All of your comments are so caring and thoughtful. Thanks for all your support. We'll be in touch again soon.
Lots of love from Indy,
Kristin & Tommy
P.S. I talked to Tim last night after he got home to Henry, Joe & Sam. It had been 2 weeks since he last saw them. Tim's reaction: "They're huge!" :) They're so huge that the pediatrician has approved for us to try a 6-hour stretch at night between feedings. We'll see how it goes...Good luck tonight, Tim and Katie!!
Monday, August 17, 2009
The Trach is In
This update will be short and sweet. My computer took a crap today, so I'm using the "public" computer in the PICU parent lounge. Tim went home today to see the Henry, Joe and Sam and to spend a little time at the office. Since it's just me and Tommy down here in Indy, I don't want to be away from him for very long if I can avoid it.
Anyway, this morning we discovered that Tom's hemoglobin was pretty low, so he received blood before surgery. He also got bumped further down the surgical schedule, so his 11am surgery didn't happen until around 3pm.
The procedure took about an hour and went very well. He has a "cuffed" trach tube - meaning it has an inflatable cuff at the bottom of the tube. This cuff can be inflated to hold the tube in place and to secure or close off the airway around the tube - keeping the important oxygen flowing in the direction it needs to be flowing. Right now, the cuff itself - in its deflated state - is enough to secure the airway and tighten up any air leaks.
His huge cheeks, multiple chins and lack of neck make it look a little uncomfortable, but he seems to handle it pretty well. He just has to turn his head to the side so his chin doesn't run into the tubing that attaches to the ventillator. When he gets feisty and starts moving around, the little bugger actually knocks the tube loose. Bells and whistles go off and people come running, but all it takes is a gentle push to put the tubing back together. We've run that drill twice already and the trach is only a few hours old. :) It could be a long night...
Thank you to everyone for all your prayers and positive vibes. They are certainly paying off so far. Tom asked me to send a special shout out to his brothers at home and to ask them to save a spot for him in the tubby time lineup. He also wants to say "hey" to his peeps at the Memorial NICU. Thanks for all you did to make him healthy and strong - he's tapping into those resources this week for sure.
Photos coming soon...stay tuned...
Lots of love, Kristin, Tim and Tommy
Anyway, this morning we discovered that Tom's hemoglobin was pretty low, so he received blood before surgery. He also got bumped further down the surgical schedule, so his 11am surgery didn't happen until around 3pm.
The procedure took about an hour and went very well. He has a "cuffed" trach tube - meaning it has an inflatable cuff at the bottom of the tube. This cuff can be inflated to hold the tube in place and to secure or close off the airway around the tube - keeping the important oxygen flowing in the direction it needs to be flowing. Right now, the cuff itself - in its deflated state - is enough to secure the airway and tighten up any air leaks.
His huge cheeks, multiple chins and lack of neck make it look a little uncomfortable, but he seems to handle it pretty well. He just has to turn his head to the side so his chin doesn't run into the tubing that attaches to the ventillator. When he gets feisty and starts moving around, the little bugger actually knocks the tube loose. Bells and whistles go off and people come running, but all it takes is a gentle push to put the tubing back together. We've run that drill twice already and the trach is only a few hours old. :) It could be a long night...
Thank you to everyone for all your prayers and positive vibes. They are certainly paying off so far. Tom asked me to send a special shout out to his brothers at home and to ask them to save a spot for him in the tubby time lineup. He also wants to say "hey" to his peeps at the Memorial NICU. Thanks for all you did to make him healthy and strong - he's tapping into those resources this week for sure.
Photos coming soon...stay tuned...
Lots of love, Kristin, Tim and Tommy
Saturday, August 15, 2009
More Surgery
Well, Tom has been pretty stable for a couple days now. His ventillator support hasn't really changed much. His blood gases have been pretty consistent. And for the most part, he seems to be comfortable (except, of course, when he coughs up the mucus in his chest and throat caused by the irritation of the ventillator tube).
We started the full dose of the "viagra" meds today - it's actually called sildenofil. Tom's blood pressure has been gradually getting lower, but is still in a good range to continue this medication. It doesn't seem to be having a profound effect on his pulmonary hypertension, but is at least helping.
Each morning we're invited to participate in rounds with the doctors and other PICU staff. Some days I think they regret inviting me to join in. :) I'm sure those of you that know me best - and those from the NICU at Memorial - can imagine the scene: notebook in hand, pen poised and a list of questions at the ready. I have to say that I'm thankful for the opportunity to get in front of them to ask my questions. I've been able to affect change in Tom's care and have brought issues to their attention. Let's just hope I don't annoy them too much before we move out of the PICU. I don't want to become one of "those" parents...
Twice a week, Tom will spend time each with physical therapists and occupational therapists. They'll work with him on movement, flexibility, developmental milestones, etc. This will help make sure he doesn't get too far behind in his overall development while in the hospital. A dietician even stopped by this week. She took some measurements and made some changes to Tom's feedings to ensure he gets enough calories to support healthy growth and development.
Yesterday (Friday) we met with Dr. Ackerman and a couple other folks on her team. We discussed our options for Tom's long-term plan and agreed the best option is the tracheostomy (or trach) and ventillator. This will give Tom the best opportunity to be the healthiest he can be.
A tracheostomy is an opening in the front of his neck that lets air move from the outside (he'll have a ventillator to do this) into the trachea (windpipe) and lungs. A trach tube is put in the opening thru the skin and into the trachea. The procedure is scheduled for 11:00am on Monday. It should take about an hour. The same surgeon that did his nissan and put in his G-tube will also do this surgery.
Following surgery, Tom will need to stay in the hospital for about 4 weeks - give or take, depending on a number of different things. The trach tube will remain in place with stitches for the first week so the channel to the trachea can heal. This is much like getting your ears pierced - the channel thru your ear lobe heals so the post of your earring goes thru it without any pain or discomfort. He'll be hooked up to a ventillator coming out of surgery and will eventually be switched over to the ventillator system that he'll use at home. After the first week, we'll begin to get training on how to care for Tom, his trach and his ventillator. Once we get to that point, we will look into the possibility of transferring him back to South Bend to complete his recovery and our training. If our insurance company doesn't like that idea, however, we'll do all of this in Indy.
When Tom comes out of recovery from surgery, he'll come back to his room in the PICU. Once a bed opens up (one is scheduled to open August 24) in the Infant ICU, we'll move there. This is a 6-bed unit filled with infants on trachs and ventillators. We visited the unit earlier this week and the babies seem very well cared for - and loved. We met a boy not much older than Tom that was happy, mobile and obviously loved his nurse. This is where we'll spend the rest of Tom's time in the hospital.
So we've still got a long road ahead - even after we bring Tom home from the hospital. He'll have the trach and ventillator for quite some time. It's difficult to estimate, but most kids like Tom have their trachs 18-24 months. Let's hope it's not that long for Tom. But even if it is, at least he'll be mobile and able to play (with limitations, of course). He won't be stuck in a bed like he is now with a regular ventillator tube in his throat. We'll be able to take him out - with some additional gear and extra effort. And most importantly, he'll be able to interact and play with his brothers.
We're moving tonight to another room in the PICU - a little quieter and a better location for nursing assignments. We don't have a phone in our room and we're not supposed to use our cell phones in the unit. So if you need to get in touch with us in a hurry, call the unit directly and ask to speak to Tom's family. The number is (317) 274-2871. Otherwise, continue to call the house, call our cell phones or email us as needed. We'll be in touch!
Thank you to everyone for your continued support and prayers.
Kristin, Tim and Tommy
We started the full dose of the "viagra" meds today - it's actually called sildenofil. Tom's blood pressure has been gradually getting lower, but is still in a good range to continue this medication. It doesn't seem to be having a profound effect on his pulmonary hypertension, but is at least helping.
Each morning we're invited to participate in rounds with the doctors and other PICU staff. Some days I think they regret inviting me to join in. :) I'm sure those of you that know me best - and those from the NICU at Memorial - can imagine the scene: notebook in hand, pen poised and a list of questions at the ready. I have to say that I'm thankful for the opportunity to get in front of them to ask my questions. I've been able to affect change in Tom's care and have brought issues to their attention. Let's just hope I don't annoy them too much before we move out of the PICU. I don't want to become one of "those" parents...
Twice a week, Tom will spend time each with physical therapists and occupational therapists. They'll work with him on movement, flexibility, developmental milestones, etc. This will help make sure he doesn't get too far behind in his overall development while in the hospital. A dietician even stopped by this week. She took some measurements and made some changes to Tom's feedings to ensure he gets enough calories to support healthy growth and development.
Yesterday (Friday) we met with Dr. Ackerman and a couple other folks on her team. We discussed our options for Tom's long-term plan and agreed the best option is the tracheostomy (or trach) and ventillator. This will give Tom the best opportunity to be the healthiest he can be.
A tracheostomy is an opening in the front of his neck that lets air move from the outside (he'll have a ventillator to do this) into the trachea (windpipe) and lungs. A trach tube is put in the opening thru the skin and into the trachea. The procedure is scheduled for 11:00am on Monday. It should take about an hour. The same surgeon that did his nissan and put in his G-tube will also do this surgery.
Following surgery, Tom will need to stay in the hospital for about 4 weeks - give or take, depending on a number of different things. The trach tube will remain in place with stitches for the first week so the channel to the trachea can heal. This is much like getting your ears pierced - the channel thru your ear lobe heals so the post of your earring goes thru it without any pain or discomfort. He'll be hooked up to a ventillator coming out of surgery and will eventually be switched over to the ventillator system that he'll use at home. After the first week, we'll begin to get training on how to care for Tom, his trach and his ventillator. Once we get to that point, we will look into the possibility of transferring him back to South Bend to complete his recovery and our training. If our insurance company doesn't like that idea, however, we'll do all of this in Indy.
When Tom comes out of recovery from surgery, he'll come back to his room in the PICU. Once a bed opens up (one is scheduled to open August 24) in the Infant ICU, we'll move there. This is a 6-bed unit filled with infants on trachs and ventillators. We visited the unit earlier this week and the babies seem very well cared for - and loved. We met a boy not much older than Tom that was happy, mobile and obviously loved his nurse. This is where we'll spend the rest of Tom's time in the hospital.
So we've still got a long road ahead - even after we bring Tom home from the hospital. He'll have the trach and ventillator for quite some time. It's difficult to estimate, but most kids like Tom have their trachs 18-24 months. Let's hope it's not that long for Tom. But even if it is, at least he'll be mobile and able to play (with limitations, of course). He won't be stuck in a bed like he is now with a regular ventillator tube in his throat. We'll be able to take him out - with some additional gear and extra effort. And most importantly, he'll be able to interact and play with his brothers.
We're moving tonight to another room in the PICU - a little quieter and a better location for nursing assignments. We don't have a phone in our room and we're not supposed to use our cell phones in the unit. So if you need to get in touch with us in a hurry, call the unit directly and ask to speak to Tom's family. The number is (317) 274-2871. Otherwise, continue to call the house, call our cell phones or email us as needed. We'll be in touch!
Thank you to everyone for your continued support and prayers.
Kristin, Tim and Tommy
Updated Pictures!
Hi! It's Katie :)
Enjoy!
Henry, Addie and Joey
Addie and Joey
Joey
Sammy
Henry
Addie and I came down on Wednesday to help out with the boys. I have enjoyed spending time with them and of course have staged several photo shoots already :) Hopefully I can figure out how to get them posted and get their names right too!
Enjoy!
Addie and Joey
Joey
Sammy
Henry
All 3 boys asleep in their bed :)
Sammy, Joey and Henry (I think in that order), sending a message out to Tommy :) (this was Becca's idea, isn't it cute?!)
Friday, August 14, 2009
To all our helpers
In our recent posts, we've neglected to mention all the wonderful help we've had for the boys at home.
At a moment's notice, my mom was able to get a week off work and was here the night Tom was moved to Riley. With the help of Becca, our nurse/babysitter/lifesaver they held down the fort for the first week. When mom had to head back home, our sister-in-law Katie took over as our "home base" person. The glue that held it all together our first 12 or so days in Indy is Don, Tim's dad. What a trooper! Pat, Tim's mom, has been down a couple times during Tom's stint in the hospital and Natalie, our 13-year-old neighbor and baby-slinging prodigy, has been amazing. Before school started, she stayed the night at our house several nights to make sure someone else got a chance to sleep. Now, Tim's Aunt Bonnie is at the helm and plans to stay until we "kick her out". As I understand it, she runs a very tight ship - which is exactly what we need!
In addition to all of these "home base" helpers, we've had a constant procession of other helpers at all hours of the day and night. These helpers include friends and neighbors from the area - and even from hours away. We can't thank you enough - all of you. We certainly couldn't divide our time between home and Indy without each and every one of you.
Since Tim and I are spending so much time away from the three boys at home, we've instituted a sort of guest book. When/if you come to help us out, please write a little note in our guest book. Be sure to include the date and time that you hung out with Henry, Joe and Sam. Tell us how well the boys ate or what fun things they did to entertain you. Our hope is that we won't feel quite as removed from their daily lives if we can share your experiences with them.
They say it takes a village to raise a child...well, I guess you could say we've recruited an entire city's worth of people to raise ours. And we couldn't be more grateful.
All our love and appreciation,
Tim, Kristin & the boys
At a moment's notice, my mom was able to get a week off work and was here the night Tom was moved to Riley. With the help of Becca, our nurse/babysitter/lifesaver they held down the fort for the first week. When mom had to head back home, our sister-in-law Katie took over as our "home base" person. The glue that held it all together our first 12 or so days in Indy is Don, Tim's dad. What a trooper! Pat, Tim's mom, has been down a couple times during Tom's stint in the hospital and Natalie, our 13-year-old neighbor and baby-slinging prodigy, has been amazing. Before school started, she stayed the night at our house several nights to make sure someone else got a chance to sleep. Now, Tim's Aunt Bonnie is at the helm and plans to stay until we "kick her out". As I understand it, she runs a very tight ship - which is exactly what we need!
In addition to all of these "home base" helpers, we've had a constant procession of other helpers at all hours of the day and night. These helpers include friends and neighbors from the area - and even from hours away. We can't thank you enough - all of you. We certainly couldn't divide our time between home and Indy without each and every one of you.
Since Tim and I are spending so much time away from the three boys at home, we've instituted a sort of guest book. When/if you come to help us out, please write a little note in our guest book. Be sure to include the date and time that you hung out with Henry, Joe and Sam. Tell us how well the boys ate or what fun things they did to entertain you. Our hope is that we won't feel quite as removed from their daily lives if we can share your experiences with them.
They say it takes a village to raise a child...well, I guess you could say we've recruited an entire city's worth of people to raise ours. And we couldn't be more grateful.
All our love and appreciation,
Tim, Kristin & the boys
Thursday, August 13, 2009
112 Days...and more
Hi everyone. This post is long overdue. As you can imagine life at Chez Coleman is a little busy and as my brother mentioned in a comment a couple posts ago, typing is not high on the priority list when there are diapers to change, mouths to feed and babies to cuddle. Before I get into Tommy's current status, I want to fill you in on some of the story that got us where we are today.
So, as you may recall, Tom was on his own in the NICU at Memorial as of May 31 when we brought Joey home. The nurses and other staff were very generous with their love and attention for Tom - and we thank them for that. It made it easier to leave him "alone" knowing he would get plenty of lovin' from the folks there. During his solo weeks in the NICU, Tom faced a lot of challenges and toughed it out like the strongest of fighters.
The week Joe came home, Tom had gone back on CPAP - again. The treatment this time: diuretics, steroids & a VERY gradual weaning of his oxygen/air flow support. The diuretics help to get rid of excess fluid in his lungs - which is part of the process with chronic lung disease (or BPD: broncho pulmonary displasia). About a month before, we tried a very low dose, short course of steroids to help stimulate lung growth and development to fight his BPD, but didn't see any remarkable results. This time we increased the dose and the length of treatment - and were fortunate to see some decent results. We were able to very slowly take him from CPAP, to high flow cannula, to "off the wall" oxygen - similar to the system we have for him at home.
During that time, Vitale explained pulmonary hypertension to us, as this is a typical by-product of BPD. If Tom had pulmonary hypertension at the time, it seemed to be mild at most according to the echo of his heart. So they raised his oxygen saturation limits to keep his oxygenation higher. (Oxygen helps dilate blood vessels, which helps with the hypertension.) The docs didn't feel that Tom needed to go on any meds to treat it at this time. Though he did start medication to treat systemic hypertension (your run-of-the-mill high blood pressure).
In the midst of all this, Tom underwent a couple swallow studies. They confirmed that he has reflux and is indeed aspirating when swallowing - meaning, when he swallows, some of his food goes down his windpipe into his lungs. He unfortunately wasn't even coughing to get the milk out. Not a good thing for many reasons, but mostly because his lungs are already at a disadvantage with BPD. We did the study twice 3 weeks apart - and saw the same results both times. When he was finally discharged from the NICU last month, it was still too dangerous for him to take feedings by mouth, so he came home with the nasal gavage (NG) feeding tube as he had in the NICU.
A few days after Tom's second swallow study, we did what Vitale called a "milk study" to check for aspirating during reflux. Tom was given a feeding through his NG tube with some sort of radio active material added to the breast milk. Four hours later, they took a picture that captured all the traces of radioactive particles where the milk had gone in his body. That test did not confirm that he was aspirating when he refluxed and we were happy to hopefully rule out reflux as a contributor to his lung issues. In hindsight, our elation and relief were a bit premature.
Prior to discharge, we had lengthy discussions with Vitale and a handful of the NICU nurses regarding the option to have a couple surgical procedures done on Tom. First would be to put in a "G tube". This feeding tube provides a direct line to the stomach thru his belly, eliminating the need for the somewhat invasive NG tube down his throat. The second procedure would be a nissan - which uses the top of the stomach to sort of cinch-up the valve between the stomach and esophogus. These procedures would help with both reflux and swallowing - 2 issues Tom faces. Knowing he would most likely outgrow these issues, we opted to wait on the surgery for now. The stress of a surgical procedure and the risks involved outweighed the potential benefits...at the time.
After 112 days, we brought Tommy home from the NICU on Thursday, July 9. In addition to his NG tube, and nasal cannula with 3/4 liter of oxygen, he came home with a variety of medications. Needless to say, it was overwhelming to manage Tom and his needs on top of the requirements of his three brothers. The first few days were very stressful, but then we began to find our groove and it began to feel like our "new normal".
The night of July 21 and morning of July 22 Tom was having a rough time with coughing/choking spells at home. We took him to see the pediatrician. She made some changes to his medications and we seemed to see an improvement on the 23rd and 24th. On the 25th, his coughing got worse and the pediatrician decided to admit Tom to the pediatric unit at Memorial. Unfortunately, this cancelled Tim's trip to Indy with our neighbor Dave to the Brickyard NASCAR race. Instead we began a 5-day hospital stay with Tom. The level of care is certainly much different in Peds vs. the NICU. We agreed early on that one of us would stay by Tom's side for his entire stay. At the end of 5 days, Tom's oxygen requirements came down to where he was at home and his coughing fits seemed to be subsiding. There really wasn't much more the docs were prepared to do for him, so Tom was discharged and he continued to hold his own for a couple more days. On Thursday, July 30, Tom had his final appointment with the eye specialist and handled the exam like a champ. But when we got home, I noticed that he was very pale. I chalked it up to the stress of the eye exam and being late for his feeding. So we fed him and waited for his color to improve, but it didn't. I called the pediatrician and made arrangements to take him to the after hours clinic - luckily our doctor was on duty that night.
When we arrived at the clinic, Tom's oxygen saturation was very low - and even after 2 Albuterol breathing treatments it only got into the low 80s (it should be in the high 90s). That, in addition to his poor coloring, encouraged the doctor to admit him. This time we went to the Peds ICU (PICU). Upon admission, the nurses drew blood gases on Tom. His numbers were alarming enough to prompt a 2nd draw. His CO2 should have been in the 50s or even as high as the 60s but was at 128. They put him on 3 liters of high flow support at 100% oxygen. And he stayed at that level of support for a day or 2 before we were able to wean it down at all.
Call us naive - or just ignorant to the ins and outs of BPD - but we still believed that Tom would recover, get back to his 3/4 liter oxygen level and we'd take him home in a few days. Perhaps the doctors' words fell on our deaf (read: optimistic) ears. Or perhaps even they didn't catch on to just how serious Tom's condition was (and still is). We had discussions about BPD, pulmonary hypertension and other issues - but it still never settled in that our little guy was fighting much harder than we thought.
The PICU doctors raised the question again about the surgical procedures to address Tom's reflux problems. Taking reflux and risk of aspiration out of the mix could not only make Tom much more comfortable, but could give his lungs a better chance of "fixing themselves" faster and enable him to grow faster and healthier. By merely looking at the mechanics of it: Tom's NG tube was running thru his throat and down into his stomach. He's got issues with swallowing and keeping the valve between his esophogus and stomach closed. Taking the tube out of the mix would enable better swallowing and lessen reflux. So we agreed to do them both, but we knew the best place to get them done is at Riley Children's Hospital in Indianapolis. Tom's PICU doctor made a couple calls and on Wednesday, August 5 Tom was transported by ambulance from South Bend to Indy. Tim followed behind in our car and I came down the next day.
Tom was admitted to Riley's Infant Unit. On August 6 Tom got an upper GI in prep for his surgeries. Everything looked good, so he was slated for surgery on the 7th. Tim and I stayed in his hospital room the night before surgery and I was able to carry him in my arms to the surgical prep area before the procedure.
Surgery went well - though it took a bit longer than average. They were able to avoid a large incision and instead did the procedure lapriscopically (sp?). Given Tom's lung issues, it took a bit of extra effort on the surgeon's part, but he was able to successfuly perform both procedures without any complications. The complications came up AFTER surgery...
At first, Tom was resistant to waking up from the anesthesia. Then he was showing a marked resistance to weaning off the ventillator used for the procedure. A few hours later, they made room for us in the PICU and set Tom up for the night. We hoped to gradually wean him off the vent and get him back on high flow or regular nasal cannula by the following day...but no such luck. Tim and I were very frustrated, feeling that if these docs would only give our tough guy a chance, he could show them just how strong he is. We'd seen him bounce back so many times before - in the NICU and since discharge - and we honestly believed he could do it again.
Then Monday morning Dr. Ackerman came on duty in the NICU. She is on staff and is the woman in charge this week. She just happens to have 20+ years with kids that have severe BPD and pulmonary hypertension. Days later and with several tests to confirm and frank chats - we now know that's exactly what Tom has. Thanks to Dr. Ackerman's direct approach and years of experience to draw upon, we're now understanding just how tough our little fighter is.
Six days post-surgery, Tom's still on the ventillator. We've discovered that his CO2 has continued to be higher than the acceptable range. We're monitoring his CO2 levels via blood draws thru his PIC line every 4 hours and using that information to determine if we can wean him off the ventillator support gradually. We've introduced meds (the same ingredient in Viagra actually - it's a great blood vessel dilator) to address his hypertension and help with this exchange of CO2 for O2. The doc is hopeful but not optimistic that the meds alone will have much of an impact. We'll discuss it further with the doc tomorrow, but the best option for Tom may be a trachea tube and ventillator. This is the most aggressive approach to managing his BPD, but it would give him the best chance to develop as normally as possible over the next year. No guarantees, but the hope is that he would be off the ventilator and trachea tube in 18 to 24 months. At that point, we would have a healthy little boy. If we decide to go with the trachea tube and ventilator option, Tom would be in the hospital for another month. Needless to say, we got much more than we bargained for when we brought Tom down for a simple acid relux and feeding tube procedure. But, we find comfort in knowing that Riley Children's Hospital is the best place for us. Until we write, and you read, again, please remember - Never give up, don't ever give up!
So, as you may recall, Tom was on his own in the NICU at Memorial as of May 31 when we brought Joey home. The nurses and other staff were very generous with their love and attention for Tom - and we thank them for that. It made it easier to leave him "alone" knowing he would get plenty of lovin' from the folks there. During his solo weeks in the NICU, Tom faced a lot of challenges and toughed it out like the strongest of fighters.
The week Joe came home, Tom had gone back on CPAP - again. The treatment this time: diuretics, steroids & a VERY gradual weaning of his oxygen/air flow support. The diuretics help to get rid of excess fluid in his lungs - which is part of the process with chronic lung disease (or BPD: broncho pulmonary displasia). About a month before, we tried a very low dose, short course of steroids to help stimulate lung growth and development to fight his BPD, but didn't see any remarkable results. This time we increased the dose and the length of treatment - and were fortunate to see some decent results. We were able to very slowly take him from CPAP, to high flow cannula, to "off the wall" oxygen - similar to the system we have for him at home.
During that time, Vitale explained pulmonary hypertension to us, as this is a typical by-product of BPD. If Tom had pulmonary hypertension at the time, it seemed to be mild at most according to the echo of his heart. So they raised his oxygen saturation limits to keep his oxygenation higher. (Oxygen helps dilate blood vessels, which helps with the hypertension.) The docs didn't feel that Tom needed to go on any meds to treat it at this time. Though he did start medication to treat systemic hypertension (your run-of-the-mill high blood pressure).
In the midst of all this, Tom underwent a couple swallow studies. They confirmed that he has reflux and is indeed aspirating when swallowing - meaning, when he swallows, some of his food goes down his windpipe into his lungs. He unfortunately wasn't even coughing to get the milk out. Not a good thing for many reasons, but mostly because his lungs are already at a disadvantage with BPD. We did the study twice 3 weeks apart - and saw the same results both times. When he was finally discharged from the NICU last month, it was still too dangerous for him to take feedings by mouth, so he came home with the nasal gavage (NG) feeding tube as he had in the NICU.
A few days after Tom's second swallow study, we did what Vitale called a "milk study" to check for aspirating during reflux. Tom was given a feeding through his NG tube with some sort of radio active material added to the breast milk. Four hours later, they took a picture that captured all the traces of radioactive particles where the milk had gone in his body. That test did not confirm that he was aspirating when he refluxed and we were happy to hopefully rule out reflux as a contributor to his lung issues. In hindsight, our elation and relief were a bit premature.
Prior to discharge, we had lengthy discussions with Vitale and a handful of the NICU nurses regarding the option to have a couple surgical procedures done on Tom. First would be to put in a "G tube". This feeding tube provides a direct line to the stomach thru his belly, eliminating the need for the somewhat invasive NG tube down his throat. The second procedure would be a nissan - which uses the top of the stomach to sort of cinch-up the valve between the stomach and esophogus. These procedures would help with both reflux and swallowing - 2 issues Tom faces. Knowing he would most likely outgrow these issues, we opted to wait on the surgery for now. The stress of a surgical procedure and the risks involved outweighed the potential benefits...at the time.
After 112 days, we brought Tommy home from the NICU on Thursday, July 9. In addition to his NG tube, and nasal cannula with 3/4 liter of oxygen, he came home with a variety of medications. Needless to say, it was overwhelming to manage Tom and his needs on top of the requirements of his three brothers. The first few days were very stressful, but then we began to find our groove and it began to feel like our "new normal".
The night of July 21 and morning of July 22 Tom was having a rough time with coughing/choking spells at home. We took him to see the pediatrician. She made some changes to his medications and we seemed to see an improvement on the 23rd and 24th. On the 25th, his coughing got worse and the pediatrician decided to admit Tom to the pediatric unit at Memorial. Unfortunately, this cancelled Tim's trip to Indy with our neighbor Dave to the Brickyard NASCAR race. Instead we began a 5-day hospital stay with Tom. The level of care is certainly much different in Peds vs. the NICU. We agreed early on that one of us would stay by Tom's side for his entire stay. At the end of 5 days, Tom's oxygen requirements came down to where he was at home and his coughing fits seemed to be subsiding. There really wasn't much more the docs were prepared to do for him, so Tom was discharged and he continued to hold his own for a couple more days. On Thursday, July 30, Tom had his final appointment with the eye specialist and handled the exam like a champ. But when we got home, I noticed that he was very pale. I chalked it up to the stress of the eye exam and being late for his feeding. So we fed him and waited for his color to improve, but it didn't. I called the pediatrician and made arrangements to take him to the after hours clinic - luckily our doctor was on duty that night.
When we arrived at the clinic, Tom's oxygen saturation was very low - and even after 2 Albuterol breathing treatments it only got into the low 80s (it should be in the high 90s). That, in addition to his poor coloring, encouraged the doctor to admit him. This time we went to the Peds ICU (PICU). Upon admission, the nurses drew blood gases on Tom. His numbers were alarming enough to prompt a 2nd draw. His CO2 should have been in the 50s or even as high as the 60s but was at 128. They put him on 3 liters of high flow support at 100% oxygen. And he stayed at that level of support for a day or 2 before we were able to wean it down at all.
Call us naive - or just ignorant to the ins and outs of BPD - but we still believed that Tom would recover, get back to his 3/4 liter oxygen level and we'd take him home in a few days. Perhaps the doctors' words fell on our deaf (read: optimistic) ears. Or perhaps even they didn't catch on to just how serious Tom's condition was (and still is). We had discussions about BPD, pulmonary hypertension and other issues - but it still never settled in that our little guy was fighting much harder than we thought.
The PICU doctors raised the question again about the surgical procedures to address Tom's reflux problems. Taking reflux and risk of aspiration out of the mix could not only make Tom much more comfortable, but could give his lungs a better chance of "fixing themselves" faster and enable him to grow faster and healthier. By merely looking at the mechanics of it: Tom's NG tube was running thru his throat and down into his stomach. He's got issues with swallowing and keeping the valve between his esophogus and stomach closed. Taking the tube out of the mix would enable better swallowing and lessen reflux. So we agreed to do them both, but we knew the best place to get them done is at Riley Children's Hospital in Indianapolis. Tom's PICU doctor made a couple calls and on Wednesday, August 5 Tom was transported by ambulance from South Bend to Indy. Tim followed behind in our car and I came down the next day.
Tom was admitted to Riley's Infant Unit. On August 6 Tom got an upper GI in prep for his surgeries. Everything looked good, so he was slated for surgery on the 7th. Tim and I stayed in his hospital room the night before surgery and I was able to carry him in my arms to the surgical prep area before the procedure.
Surgery went well - though it took a bit longer than average. They were able to avoid a large incision and instead did the procedure lapriscopically (sp?). Given Tom's lung issues, it took a bit of extra effort on the surgeon's part, but he was able to successfuly perform both procedures without any complications. The complications came up AFTER surgery...
At first, Tom was resistant to waking up from the anesthesia. Then he was showing a marked resistance to weaning off the ventillator used for the procedure. A few hours later, they made room for us in the PICU and set Tom up for the night. We hoped to gradually wean him off the vent and get him back on high flow or regular nasal cannula by the following day...but no such luck. Tim and I were very frustrated, feeling that if these docs would only give our tough guy a chance, he could show them just how strong he is. We'd seen him bounce back so many times before - in the NICU and since discharge - and we honestly believed he could do it again.
Then Monday morning Dr. Ackerman came on duty in the NICU. She is on staff and is the woman in charge this week. She just happens to have 20+ years with kids that have severe BPD and pulmonary hypertension. Days later and with several tests to confirm and frank chats - we now know that's exactly what Tom has. Thanks to Dr. Ackerman's direct approach and years of experience to draw upon, we're now understanding just how tough our little fighter is.
Six days post-surgery, Tom's still on the ventillator. We've discovered that his CO2 has continued to be higher than the acceptable range. We're monitoring his CO2 levels via blood draws thru his PIC line every 4 hours and using that information to determine if we can wean him off the ventillator support gradually. We've introduced meds (the same ingredient in Viagra actually - it's a great blood vessel dilator) to address his hypertension and help with this exchange of CO2 for O2. The doc is hopeful but not optimistic that the meds alone will have much of an impact. We'll discuss it further with the doc tomorrow, but the best option for Tom may be a trachea tube and ventillator. This is the most aggressive approach to managing his BPD, but it would give him the best chance to develop as normally as possible over the next year. No guarantees, but the hope is that he would be off the ventilator and trachea tube in 18 to 24 months. At that point, we would have a healthy little boy. If we decide to go with the trachea tube and ventilator option, Tom would be in the hospital for another month. Needless to say, we got much more than we bargained for when we brought Tom down for a simple acid relux and feeding tube procedure. But, we find comfort in knowing that Riley Children's Hospital is the best place for us. Until we write, and you read, again, please remember - Never give up, don't ever give up!
Monday, August 10, 2009
Monday update....
Hello again....Jules here. Kristin, Tim & Tommy are still all down in Indianapolis. Tom is, unfortunately, still on the vent and they are working very hard to get him off. He had some test done today and also an echo. As far as the surgery, he is healing nicely. His discharge date is very unknown at this point. A schedule is being created right now for coverage with Henry, Joe and Sam back at their home. If anyone is able to offer some help, please contact Katie at: starrsindc@msn.com Please continue to keep the Coleman Family in your thoughts and prayers!! Thanks!
Saturday, August 8, 2009
Surgery update.....
Hello again....Jules here! Kristin sent me an e-mail this morning about Tommy and his surgery, here is what she had to say: The surgery went very well, the doctors were able to do it laproscopically (sp?). He is still on the vent though. His CO2 is pretty high, so they want to increase his O2 on the vent for awhile longer before trying to extubate him. Kristin stayed in the PICU with Tom last night and he'll be in there till after they extubate him and then he'll move to the infant unit. I will keep you posted as I get more information.........
Thursday, August 6, 2009
August update
Hello everyone! This is Tim & Kristin's friend, Julie Rees updating their blog. As you can imagine, they all have been very busy with the boys! Sam, Joe and Henry have all been doing very well at home since their discharge date and have been growing/eating/smiling like crazy! Unfortunately, Tom has been in/out of the hospital a couple times the last month. Most recently he was admitted on Thursday, July 30th. Since last Thursday the good news, Tom's oxygen support has gone back down where it was when he left the NICU. But, since Tommy still has other issues - reflux and aspirating when swallowing - Tim and Kristin have decided to have a couple procedures performed on Tommy. Last night, Wednesday August 5th, Tommy was transported to a hospital in Indianapolis to have the two procedures done. The doctor will install a G tube, a direct line to Tom's stomach. This will allow the feeding tube that goes up his nose and down into his throat to be removed - which will hopefully make swallowing easier. The other procedure they will perform is called a nissan. The doctors will "cinch up" the top of Tom's stomach to tighten the valve between his stomach and esophogus. This will hopefully resolve his reflux issues!! Tim will be staying in Indy with Tom until he can come home. Kristin drove down today (Thursday) and will stay a few days. Kristin and Tim have great help at home right now with the other 3 boys. Please keep all of them in your thoughts/prayers, I know they appreciate it so much. ~ Jules
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