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?!)
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