It's the same dance we learned back at the NICU that Tom has been practicing ever since.
Tom has made good progress overall since we've been back in South Bend. The docs have made several tweaks to his vent settings and have successfully weened him down on both is rate and his oxygen. Today, he's at 35% oxygen and at a rate of 25 breaths per minute. This is actually huge progress considering the setback we had last week.
On Wednesday, we had a "care conference" for Tom. All the major players in his care got together with us to discuss the necessary steps to Tom's discharge and to set a target date to bring him home. The PICU intensivist (doctor), primary nurse, social work, home nursing, pediatrician, etc. each brought to the table the goals or requirements that needed to be met before their piece of the puzzle would be ready for Tom's arrival at home. October 6 is the magical date. We should have our training done (including nursing-type care and understanding all of his gear), the home care folks should have nurses lined up and Tom should have time to get down a bit on his settings. How exciting - thrilling, actually. The thought of not having to split our time between home and hospital, of being able to spend time together as a family and of Tommy finally getting to see his brothers again made me giddy. Light at the end of the tunnel at last. Sure, we know the date
isn't set in stone; there are a number of stars that need to align. But having a date to aim for - that's a huge step closer to home.
The next day was a big day for Tom's brothers. Henry, Sam and Joe had their 6-month check-up with the pediatrician. Our friend Gretchen from the NICU stayed with Tommy at the hospital while Aunt Bonnie and I loaded up the other 3 hooligans in the van and took them to the doctor's office. All three checked out just fine - and took their immunizations like champs. Henry and Sammy did their fair share of crying and screaming, but I have to say that Joe is the one that really took it like a champ. Their current weights are very impressive, especially considering their tiny beginnings just over 6 months ago: Joe is the lightest of the 3 boys at home, weighing in at 13 pounds 4 ounces. Sam is 13 lbs 7 oz and Hank the Tank is a whopping 13 lbs 13 oz! Tommy's weight as of tonight is just about 13 pounds even. Huge!
Anyway, on my drive back to the hospital, Tommy's nurse called me to tell me he'd had a particularly rough morning. His oxygen saturations kept dropping, his CO2 was particularly high (even higher than when we first came to the PICU here at the end of July), and he was very uncomfortable. They'd tried a number of different settings on his home vent and needed to be moved back to the hospital vent. (For reference, the home vent could be compared to a Chevette and the hospital vent a DeVille. They both get the job done, but one of them has much better ride and handling.) Needless to say, I was upset. I was very concerned about Tommy. I felt awful that poor Gretchen was there in the middle of the mess. And I was sad at the big step backward. We had just been riding so high after the care conference the day before - and here we were, back on the hospital vent.
Come to find out, Tom had "tracheitis" (sp?). Because there is always mucus/secretions sitting in Tom's trach (as there typically is with any trach patient), its an ideal environment for bacteria and other "bugs" to hang out. Usually they hang out in a nice balance, but every now and then one of them gets unruly and causes a stir. Tom had been experiencing more secretions than normal and they were turning cloudy and slightly yellow - indicating a possible infection. We tested the mucus and voila - tracheitis. Luckily we caught it before it spread beyond his throat and with antibiotics he seemed to quickly shake the infection and has been doing very well ever since. In fact, they put him on his new home vent (a newer model than what he had before) Sunday morning. And since then we've made reductions in his settings - getting him down to the numbers I mentioned above. And the best part is that we're still targeting October 6 for discharge. We couldn't be
happier - or more relieved that he's recovered so well.
In other news, Tim took a short business trip to Pittsburgh and we were able to recruit enough help to keep things rolling at the house while I stayed with Tommy. In fact, we've had a wonderful succession of helpers to help us manage our crazy world. We honestly couldn't possibly thank each of you enough. We'll be searching for some steady help - perhaps in the form of a nanny or nursing student - to stand in for Becca and Aunt Bonnie as our steady helpers. Plus, this will allow time for me to focus on work. (Yes, I started back to work last week. Our checking account will certainly appreciate not sending those payments to Cobra any more. It's been a challenge to keep my head in the game, but hopefully it will get easier to find that balance between work and family.)
The helper of the year award, however, goes to Aunt Bonnie. Wow. What a trooper. Bonnie has spent over 5 weeks with us already - and after a well-deserved vacation next week, she's coming back for 2 more weeks with "her boys". Incredible. Amazing. She's been the glue that's held us all together - and has done it seemingly effortlessly. Simply put - as she typically does - "I just felt like I needed to be here." Bonnie told me she's prayed that the right helpers would find their way to us - that the right nurses, doctors, etc. would enter our world and help to make things better for all of us. But I think the helper that's had the most imact is Bonnie. You've been a guardian angel and fairy godmother to our boys and for that you'll always have a very special place in our hearts - and theirs.
Another guardian angel for us has been our neighbor Julie. Not only has she been a wonderful help with caring for the boys at home, she's also volunteered to be trained to care for Tommy when he comes home. She also offered to stay the night at the hospital with Tommy on Friday night. Not only did this give her more experience and training with Tom, but also gave Tim and me our first real date night in ... hell, in I don't remember how long. We attended McDazzle Friday night. That's the annual fund raiser for South Bend's Ronald McDonald Family Room at Memorial Hospital. If you've read our blog at all, you know how much we support and appreicate this wonderful service. The director of the RMFR asked us to be guest speakers and to share our story. We were happy to do so; anything in support of such a good cause. We had a great time at the event and got to see several familiar faces: many of the NICU doctors were there. :) Doctors Okanlami (from NICU
and PICU), Dr. White and Vitaliy with his wife Anna were there. Julie also arranged for us to have a room for the night at the Inn at St. Mary's. What a treat. Not only did Tim and I get to spend so much time together, but we also got to have some solid sleep. Both I'm sure were very helpful to us in so many ways.
On Sunday we attended the annual NICU reunion. It takes place at a children's museum in South Bend and NICU "graduates" and their families attend. We happened to be there when a news crew came through and asked to interview us. Sure! So we made it on the news. We've got it recorded on our DVR and - thanks to Kevin for this suggestion - I'm going to try using my digital recorder to capture the show on the TV so I can post it here or on youtube or something. More to come on that. If anything, we'll at least have some photos to share - of this event and a shot of Tim and me with Ronald McDonald Friday night.
We're making progress on our training in prep for Tom's return home and should have all those ducks in a row by the end of the weekend. We did our 24-hour shift here at the hospital with Tommy from 9pm last night until 9pm tonight. It all went very well. We were responsible for all of Tommy's care. The 24-hour requirement is intended as a sort of dry run for when we get home with Tom. Thankfully, we've got the experience of having him home for 2 weeks in July with his NG tube feedings and oxygen gear. Sure, his gear is more intense and complicated now, but if we could do that before, we can certainly do this now. Plus, since one of us is here all the time, we've already gotten so much experience with his feedings and other care.
Well, I think that covers things from our end of the world. Plus, I need to stop typing so I can get some sleep. Hopefully Tommy is on the same page and also feels that I should get some rest tonight. :) We'll post some pictures soon. And we'll certainly keep you posted on our October 6 target date for discharge. Thank you for your continued love, prayers and support!
Lots of love,
Kristin, Tim, Tommy, Henry, Sam and Joe
Wednesday, September 30, 2009
Sunday, September 13, 2009
South Bend Tribune article
Here's the URL for the South Bend Tribune article: http://www.southbendtribune.com/article/20090913/News01/909130369/1130
If this doesn't work, go to www.southbendtribune.com and there should be a link to our article on the right side of the screen. In the printed format, we're again on the front page. (That just cracks me up.) Anyway, once you get to the article online, there's an option to view more photos and a link to the slide show. There is supposed to be audio on the slide show, but it doesn't seem to be working on our home computer. Let me know if you have any luck with it.
Kev, I'll save a copy for framing...hoping we can cash in on your employee discount. :)
Again, if you live locally and get the paper, please save your copy for us. Enjoy!
Love,
Kristin, Tim and the boys
If this doesn't work, go to www.southbendtribune.com and there should be a link to our article on the right side of the screen. In the printed format, we're again on the front page. (That just cracks me up.) Anyway, once you get to the article online, there's an option to view more photos and a link to the slide show. There is supposed to be audio on the slide show, but it doesn't seem to be working on our home computer. Let me know if you have any luck with it.
Kev, I'll save a copy for framing...hoping we can cash in on your employee discount. :)
Again, if you live locally and get the paper, please save your copy for us. Enjoy!
Love,
Kristin, Tim and the boys
Saturday, September 12, 2009
Almost home
Hi everyone! Here's Tommy waving to you from his new bed in South Bend.
Unfortunately, I can't figure out how to edit photos on this computer, so the shot is a little dark. Don't be fooled: his room is actually very bright with a huge east-facing window.
Tommy is starting his third morning here at South Bend Memorial Hospital. He is settling in pretty well. It is so nice to be back "home" and surrounded by familiar faces. Tom has been visited by no fewer than a half dozen people from the NICU already. His primary nurse Jugenia even offered to babysit for a while last night so Tim and I could go out for a bite to eat together. What a nice treat. Tommy really seemed to enjoy the time with his friend Jugenia and Tim and I loved the opportunity to catch up and just be with each other for a couple hours. Thank you Jugenia!!
We had some issues initially with Tom's ventillator when we arrived on Wednesday afternoon: they didn't have the LTV (home vent) here for him and they put him on the vent he was on before the LTV at Riley. Though this would probably not affect his overall time in the hospital, I couldn't help but see this as a step backward. He had to be stable on the LTV for a week before we could transfer him here. So what good could come of putting him back on the other vent? (especially since they were constantly tweaking his vent settings) Anyway, its all a moot point now. Later that night, we were able to get the LTV set up and running. He's back on the same settings as when he arrived, but doesn't quite seem to have found his groove yet. They say that each machine has it's own slight variations on how it manages the air flow - and these variations may feel different to Tom. His respiration rate has been unusually high - especially when he's at rest - but all of his numbers are sitting right where they were before we left Riley. So there's no real reason for concern. We'll wait it out for a bit and see how he does.
We met Mary on Wednesday night. She's our trainer from the home medical company. She already did a home assessment on Thursday and has scheduled the first vent training session for Tuesday at our house. My mom and our neighbor Julie will start the training with me. Tim will be out of town next week, but will jump into the training sessions when he gets back. It'll take a couple weeks to complete all of the sessions, so we know Tom will be at Memorial for at least that long.
Our insurance company has approved Tom for nursing assistance at home when he's discharged. Once we get Tom home and settled in, we'll have nursing support for his care 12 hours a day. We'll start working with the prospective nurses at the hospital so they can get to know Tom and his gear and so we can get to know them.
At home, Henry, Joe and Sam are all doing very well - and are as cute as ever. They've started taking turns sleeping alone in a crib, as space was getting a little too tight any more to keep all 3 in the same crib together. Hopefully this will make the transition to their own cribs a little smoother when the time comes.
We also received some bittersweet news this week: our nurse/babysitter extraordinaire Becca has been offered a job at Riley's PICU. She has, of course, accepted the position and will start work there on Sept 28. We'll certainly miss her and her consistent, dependable help. Over the last few months she has become a part of our family and it will be difficult to see her go. We knew at the beginning that we couldn't keep her here forever (if we could only provide benefits...), but it's still sad to see her go. We'd like to invite all of you that have met and "worked" with Becca to send a note of thanks. Please snail mail a card to our home or email something to my email address and I'll collect them to present to her before she leaves. Thank you!
We met twice more with the photographer from the South Bend Tribune this week. He captured a few more photos at home and some sound bites to include on their website with our story. He also came to the hospital on Friday to get some shots of us with Tommy. I spoke with the journalist to confirm a few facts in the story and she promised that it will run on Sunday. If you live in the South Bend area and get the paper, please save your copy for us. And regardless of where you live, be sure to check out the newspaper's website for the photos and audio clips. As soon as I get the link from their website Sunday morning, I'll post it here on the blog.
Well, I think that covers it from our little corner of the world. Thanks again to all of the helpers at the house and to everyone for your continued love and support.
GO BLUE!
Kristin, Tim and the boys
Unfortunately, I can't figure out how to edit photos on this computer, so the shot is a little dark. Don't be fooled: his room is actually very bright with a huge east-facing window.
Tommy is starting his third morning here at South Bend Memorial Hospital. He is settling in pretty well. It is so nice to be back "home" and surrounded by familiar faces. Tom has been visited by no fewer than a half dozen people from the NICU already. His primary nurse Jugenia even offered to babysit for a while last night so Tim and I could go out for a bite to eat together. What a nice treat. Tommy really seemed to enjoy the time with his friend Jugenia and Tim and I loved the opportunity to catch up and just be with each other for a couple hours. Thank you Jugenia!!
We had some issues initially with Tom's ventillator when we arrived on Wednesday afternoon: they didn't have the LTV (home vent) here for him and they put him on the vent he was on before the LTV at Riley. Though this would probably not affect his overall time in the hospital, I couldn't help but see this as a step backward. He had to be stable on the LTV for a week before we could transfer him here. So what good could come of putting him back on the other vent? (especially since they were constantly tweaking his vent settings) Anyway, its all a moot point now. Later that night, we were able to get the LTV set up and running. He's back on the same settings as when he arrived, but doesn't quite seem to have found his groove yet. They say that each machine has it's own slight variations on how it manages the air flow - and these variations may feel different to Tom. His respiration rate has been unusually high - especially when he's at rest - but all of his numbers are sitting right where they were before we left Riley. So there's no real reason for concern. We'll wait it out for a bit and see how he does.
We met Mary on Wednesday night. She's our trainer from the home medical company. She already did a home assessment on Thursday and has scheduled the first vent training session for Tuesday at our house. My mom and our neighbor Julie will start the training with me. Tim will be out of town next week, but will jump into the training sessions when he gets back. It'll take a couple weeks to complete all of the sessions, so we know Tom will be at Memorial for at least that long.
Our insurance company has approved Tom for nursing assistance at home when he's discharged. Once we get Tom home and settled in, we'll have nursing support for his care 12 hours a day. We'll start working with the prospective nurses at the hospital so they can get to know Tom and his gear and so we can get to know them.
At home, Henry, Joe and Sam are all doing very well - and are as cute as ever. They've started taking turns sleeping alone in a crib, as space was getting a little too tight any more to keep all 3 in the same crib together. Hopefully this will make the transition to their own cribs a little smoother when the time comes.
We also received some bittersweet news this week: our nurse/babysitter extraordinaire Becca has been offered a job at Riley's PICU. She has, of course, accepted the position and will start work there on Sept 28. We'll certainly miss her and her consistent, dependable help. Over the last few months she has become a part of our family and it will be difficult to see her go. We knew at the beginning that we couldn't keep her here forever (if we could only provide benefits...), but it's still sad to see her go. We'd like to invite all of you that have met and "worked" with Becca to send a note of thanks. Please snail mail a card to our home or email something to my email address and I'll collect them to present to her before she leaves. Thank you!
We met twice more with the photographer from the South Bend Tribune this week. He captured a few more photos at home and some sound bites to include on their website with our story. He also came to the hospital on Friday to get some shots of us with Tommy. I spoke with the journalist to confirm a few facts in the story and she promised that it will run on Sunday. If you live in the South Bend area and get the paper, please save your copy for us. And regardless of where you live, be sure to check out the newspaper's website for the photos and audio clips. As soon as I get the link from their website Sunday morning, I'll post it here on the blog.
Well, I think that covers it from our little corner of the world. Thanks again to all of the helpers at the house and to everyone for your continued love and support.
GO BLUE!
Kristin, Tim and the boys
Tuesday, September 8, 2009
South Bend, here we come!
It's official - we've got written pre-approval from the insurance company and the folks in the PICU at Memorial Hospital are expecting us: Tommy's headed back to South Bend tomorrow. If home weren't so far away from Riley, we'd certainly be open to the idea of staying here until Tommy's ready to go home. The move to South Bend, however, will likely make life substantially less complicated for all of us. We've made some fast friends here in Indy and hope to keep in touch with them - even if only through our blog.
Tommy's ride (the ambulance) is scheduled to arrive at Riley to pick him up at 10am. For the ride to South Bend, I'll follow behind in the van, like Tim did on the way here 34 days ago (yeah - that's right - THIRTY-FOUR days). We're not sure yet how long to expect Tom to be at Memorial - we'll figure that out once we get there.
We know we need to wean Tom down on his resp rate on the ventillator (he's at 30 now and should be in the mid-20's before he were to be discharged), but his other vent settings are all perfectly acceptable for home. The other requirement to consider before his discharge is our training - and training for the other folks that will be taking care of him regularly at home.
Well, I need to get all our stuff packed up tonight. Tomorrow morning will be a bit crazy before we leave at 10am. Breathing treatments, feedings, loading the car, etc. We'll let everyone know how things are in South Bend once we get settled in.
Love Kristin & Tommy
Tommy's ride (the ambulance) is scheduled to arrive at Riley to pick him up at 10am. For the ride to South Bend, I'll follow behind in the van, like Tim did on the way here 34 days ago (yeah - that's right - THIRTY-FOUR days). We're not sure yet how long to expect Tom to be at Memorial - we'll figure that out once we get there.
We know we need to wean Tom down on his resp rate on the ventillator (he's at 30 now and should be in the mid-20's before he were to be discharged), but his other vent settings are all perfectly acceptable for home. The other requirement to consider before his discharge is our training - and training for the other folks that will be taking care of him regularly at home.
Well, I need to get all our stuff packed up tonight. Tomorrow morning will be a bit crazy before we leave at 10am. Breathing treatments, feedings, loading the car, etc. We'll let everyone know how things are in South Bend once we get settled in.
Love Kristin & Tommy
Monday, September 7, 2009
A couple more pics
I forgot that Aunt Jules sent me a couple photos that she took while visiting last weekend. But this doesn't mean Amy is off the hook for sending me the shots she took last week. :)
In the stripes, Sam is on the left, Joe in the middle and Henry on the right. My best guess on the activity mat photo is Joe, Sam, Henry from left to right. Jules, do you remember?
In the stripes, Sam is on the left, Joe in the middle and Henry on the right. My best guess on the activity mat photo is Joe, Sam, Henry from left to right. Jules, do you remember?
Sunday, September 6, 2009
Baby steps
Hi everyone
In the last couple weeks, Tommy has been making progress. He's been switched over to the home ventilator system - the LTV - and has been doing well on this vent. His CO2 levels haven't gone down as much as we had hoped, but they're at least holding steady. Tom has been gaining weight and tolerating his feedings very well. He's active and interactive with the nurses, physical therapists and (of course) his parents. He chomps on his pacifier and LOVES his mobile. (Looks like we'll be buying one for his crib at home just like the one he's got here in the Infant ICU...)
Tom's progress has impressed the docs so much that they've approved a transfer back to Memorial Hospital in South Bend. Our insurance company has also approved this - something very unusual in the world of private insurance. But considering the circumstances around Tom (3 brothers at home, the 3+ hour drive for his parents, and the others that need to get trach/vent training), they have agreed that the move back to South Bend is the best for all involved. Tom is scheduled to make the move on Wednesday; it was originally scheduled for Tuesday, but the folks at Memorial needed one more day to get things ready for Tom's arrival. Having him only 25 minutes from home should make life a bit easier for all of us. We don't know yet how long Tom will be at Memorial, but it is one baby step closer to home.
So I'll finish out our stay in Indy with Tom. Tim went home to enjoy the rest of the holiday weekend on Sunday afternoon. In the time he spent with Tom this weekend and last, Tim was able to accomplish a lot of training with Tom's trach. Tim attended a trach class, performed "trach care" (cleaning and changing the dressing around Tom's trach), and quite successfully completed 3 trach changes. One of those changes was a practice run on an "emergency trach change" where he performed a typically 2-man process by himself. What a pro. I've gotten much of the same training under my belt, but only 1 trach change so far. I guess I'm just not as brave as Tim is ... yet. I'm sure that will come in time...baby steps, right?...
At home we've had a continued string of wonderful helpers. Aunt Bonnie has been incredible and the boys have really taken to her. Last weekend "Aunt Jules" came to visit and help out. Then last week Aunt Rosie, cousin Amy and Grant hung out with the boys. We had to frisk Rosie before she left to make sure she wasn't trying to smuggle Henry, Joe or Sam out the door. :) This weekend Tim's parents are in town and with them is Uncle Tom. He's not only visiting the boys, but also Aunt Bonnie! There are no words to express our gratitude for their help - and the help of all those signed up to help in the coming weeks. We know we couldn't get thru this crazy time without you.
As we get closer to Tom's arrival at home, there are several things we need to implement at home and to consider for those that come to help - particularly those that will help out regularly with the boys. Among them are:
- Flu season: It will be particularly important for each visitor to be tuned in to his/her own health and exposure to those that are sick. Even a cold can turn into something much more serious for any of the boys - particularly Tom. If you're a regular helper, we'd like you to consider getting a flu shot.
- Inhaled irritants: Since Tom doesn't breathe through his nose or mouth, his air bypasses the natural filters built into our respiratory systems. We need to take extra steps to make sure particles and fumes in the air around Tommy are strictly limited. We will not be able to dust or vacuum when he's in the room. Aerosols are a big no-no; as are cleaners with chemical fumes and perfumes/colognes. Please refrain from wearing perfume or cologne when visiting.
As we learn more about what Tommy will need at home, we'll be sure to let everyone know. We'll want it to be as smooth a transition as possible - and we certainly appreciate your continued support to help make that happen. In the meantime, please enjoy the photos below... oh - and speaking of photos...
Alicia Gallegos, the journalist from the South Bend Tribune that interviewed us a few weeks after the boys were born, contacted me last week regarding a follow-up story. She and a photographer visited the house on Thursday to interview Tim before he came back to Indy. Then they came back on Friday to interview me. Alicia was hoping to get the story in the paper on Sunday, but weren't sure they had the resources over the weekend to set up the online slide show they hoped to incorporate. So watch for it online and in the paper on Monday. If for some reason the story doesn't make it into Monday's paper, I'll call Alicia on Tuesday to get the details and will let you know when the story will run.
Take care everyone - and thanks again for all your love and support. Please enjoy the photos below...
Love,
Kristin, Tim and the boys
This was taken a couple weeks ago when Papa Don and Uncle Mike came to visit Tommy before his trach surgery.
Shortly after Tom's trach surgery...Mr. No-neck...
The first day I got to hold Tommy since his g-tube surgery and after his trach surgery.
A couple shots of the fellas at home. Henry is in orange, Joe in blue and Sam in green. Too cute for words, eh? I'll have more cute photos of these 3 hooligans soon. (REMINDER to cousin Amy to send me those pics...)
Tommy last week with his physical therapist.
Mr. Sweetie Face
Daddy and Tommy - probably watching Sports Center...
Tommy loves his bouncy seat and mobile.
Mommy and Tommy
In the last couple weeks, Tommy has been making progress. He's been switched over to the home ventilator system - the LTV - and has been doing well on this vent. His CO2 levels haven't gone down as much as we had hoped, but they're at least holding steady. Tom has been gaining weight and tolerating his feedings very well. He's active and interactive with the nurses, physical therapists and (of course) his parents. He chomps on his pacifier and LOVES his mobile. (Looks like we'll be buying one for his crib at home just like the one he's got here in the Infant ICU...)
Tom's progress has impressed the docs so much that they've approved a transfer back to Memorial Hospital in South Bend. Our insurance company has also approved this - something very unusual in the world of private insurance. But considering the circumstances around Tom (3 brothers at home, the 3+ hour drive for his parents, and the others that need to get trach/vent training), they have agreed that the move back to South Bend is the best for all involved. Tom is scheduled to make the move on Wednesday; it was originally scheduled for Tuesday, but the folks at Memorial needed one more day to get things ready for Tom's arrival. Having him only 25 minutes from home should make life a bit easier for all of us. We don't know yet how long Tom will be at Memorial, but it is one baby step closer to home.
So I'll finish out our stay in Indy with Tom. Tim went home to enjoy the rest of the holiday weekend on Sunday afternoon. In the time he spent with Tom this weekend and last, Tim was able to accomplish a lot of training with Tom's trach. Tim attended a trach class, performed "trach care" (cleaning and changing the dressing around Tom's trach), and quite successfully completed 3 trach changes. One of those changes was a practice run on an "emergency trach change" where he performed a typically 2-man process by himself. What a pro. I've gotten much of the same training under my belt, but only 1 trach change so far. I guess I'm just not as brave as Tim is ... yet. I'm sure that will come in time...baby steps, right?...
At home we've had a continued string of wonderful helpers. Aunt Bonnie has been incredible and the boys have really taken to her. Last weekend "Aunt Jules" came to visit and help out. Then last week Aunt Rosie, cousin Amy and Grant hung out with the boys. We had to frisk Rosie before she left to make sure she wasn't trying to smuggle Henry, Joe or Sam out the door. :) This weekend Tim's parents are in town and with them is Uncle Tom. He's not only visiting the boys, but also Aunt Bonnie! There are no words to express our gratitude for their help - and the help of all those signed up to help in the coming weeks. We know we couldn't get thru this crazy time without you.
As we get closer to Tom's arrival at home, there are several things we need to implement at home and to consider for those that come to help - particularly those that will help out regularly with the boys. Among them are:
- Flu season: It will be particularly important for each visitor to be tuned in to his/her own health and exposure to those that are sick. Even a cold can turn into something much more serious for any of the boys - particularly Tom. If you're a regular helper, we'd like you to consider getting a flu shot.
- Inhaled irritants: Since Tom doesn't breathe through his nose or mouth, his air bypasses the natural filters built into our respiratory systems. We need to take extra steps to make sure particles and fumes in the air around Tommy are strictly limited. We will not be able to dust or vacuum when he's in the room. Aerosols are a big no-no; as are cleaners with chemical fumes and perfumes/colognes. Please refrain from wearing perfume or cologne when visiting.
As we learn more about what Tommy will need at home, we'll be sure to let everyone know. We'll want it to be as smooth a transition as possible - and we certainly appreciate your continued support to help make that happen. In the meantime, please enjoy the photos below... oh - and speaking of photos...
Alicia Gallegos, the journalist from the South Bend Tribune that interviewed us a few weeks after the boys were born, contacted me last week regarding a follow-up story. She and a photographer visited the house on Thursday to interview Tim before he came back to Indy. Then they came back on Friday to interview me. Alicia was hoping to get the story in the paper on Sunday, but weren't sure they had the resources over the weekend to set up the online slide show they hoped to incorporate. So watch for it online and in the paper on Monday. If for some reason the story doesn't make it into Monday's paper, I'll call Alicia on Tuesday to get the details and will let you know when the story will run.
Take care everyone - and thanks again for all your love and support. Please enjoy the photos below...
Love,
Kristin, Tim and the boys
This was taken a couple weeks ago when Papa Don and Uncle Mike came to visit Tommy before his trach surgery.
Shortly after Tom's trach surgery...Mr. No-neck...
The first day I got to hold Tommy since his g-tube surgery and after his trach surgery.
A couple shots of the fellas at home. Henry is in orange, Joe in blue and Sam in green. Too cute for words, eh? I'll have more cute photos of these 3 hooligans soon. (REMINDER to cousin Amy to send me those pics...)
Tommy last week with his physical therapist.
Mr. Sweetie Face
Daddy and Tommy - probably watching Sports Center...
Tommy loves his bouncy seat and mobile.
Mommy and Tommy
Friday, August 28, 2009
Subscribe to:
Posts (Atom)