Tyler is still doing great! And practically healed... seriously.
He was totally off all oxycodone by Wednesday afternoon and Wednesday night I gave him a dose of Tylenol instead. On Thursday, I didn't do any Tylenol at all. Now, currently late Friday night, and he went without Tylenol today too! If that's not a tale-tale sign that he's better, I don't know what would be!
He's crawling all over the place, for no more than 45 minutes at a time. (I limit him, otherwise, he'd be going, going, going.) Also, he's also enjoying his baths again.
Many thank you's go out to the awesome support system we have and the many kind and polite comments we've received over the past week, both face-to-face and here on Ty's blog.
Friday, October 24, 2008
Tuesday, October 21, 2008
Doing great! Tuesday Morning Update:
Tyler is doing just wonderful! He is receiving very little pain medicine for comfort and is otherwise eating and playing just as before. He can take a bath tonight as part of his normal routine too!
Monday, October 20, 2008
Circumcision Day and Report
I am happy to report that we are HOME and everything went better than expected!
Surgery started at 10:20am and he was in the post-anesthesia recovery unit by 11:05am. We got to go in and see him at 11:45am and stay with him until we were discharged at 1:30pm.
He's just a tiny bit raspy from being intubated, and so far I've done the first diaper change and home care.
Let's see:
On October 30th, he'll have a check up visit with the surgeon.
He'll be on clear liquids until dinnertime, when at that time I can slowly reintroduce his Pediasure feedings.
I am just BEAMING! Now, here's praying to a smooth five days with no bumps!
To our friends and family out there still following this blog for Tyler... we want to thank you!
Surgery started at 10:20am and he was in the post-anesthesia recovery unit by 11:05am. We got to go in and see him at 11:45am and stay with him until we were discharged at 1:30pm.
He's just a tiny bit raspy from being intubated, and so far I've done the first diaper change and home care.
Let's see:
On October 30th, he'll have a check up visit with the surgeon.
He'll be on clear liquids until dinnertime, when at that time I can slowly reintroduce his Pediasure feedings.
I am just BEAMING! Now, here's praying to a smooth five days with no bumps!
To our friends and family out there still following this blog for Tyler... we want to thank you!
Sunday, October 19, 2008
Big event happening in the morning . . .
Tyler is scheduled for his circumcision at 9:00am tomorrow (Monday, Oct. 20th).
You may remember that he was unable to have it performed when he was first born because of the unstableness of his heart.
It will be a very, very huge ordeal for him as far as the surgery itself. He'll be completely anesthesized and will be put on the ventilator for the surgery. The anethesiologist from the heart team nixed the idea of using conscious sedation with a local, because of the stress it would have undoubtedly put on his heart.
SO, if you've got some time tomorrow morning... please say a little prayer or send him a thought (or two) for a completely UNEVENTFUL operation and a sucessful, simple extubation after he's completely awake.
I am one nervous Mommy right now.
PS: In a day or two, I will update the blog about how well his first Feeding Clinic appointment went as well as last week's Cardiologist appointment.
You may remember that he was unable to have it performed when he was first born because of the unstableness of his heart.
It will be a very, very huge ordeal for him as far as the surgery itself. He'll be completely anesthesized and will be put on the ventilator for the surgery. The anethesiologist from the heart team nixed the idea of using conscious sedation with a local, because of the stress it would have undoubtedly put on his heart.
SO, if you've got some time tomorrow morning... please say a little prayer or send him a thought (or two) for a completely UNEVENTFUL operation and a sucessful, simple extubation after he's completely awake.
I am one nervous Mommy right now.
PS: In a day or two, I will update the blog about how well his first Feeding Clinic appointment went as well as last week's Cardiologist appointment.
Tuesday, September 30, 2008
365 days ago!
One year ago today we embarked on a journey we'd only dreamt about!... Bringing home our little miracle child for the first time after spending 38 days at Children's Mercy Hospital! Weighing 8 lbs 10 oz. at birth, he came home weighing just under 7.5 pounds. One year later, he weighs 18 pounds and is the sparkle of our eyes!
There is so much to update about!
Tyler started officially crawling on September 12, 2008 and he loves it! Shhh... it's a secret, but so does Mommy! I never thought that (as a parent) I would look forward to the day when I could say, "My baby is mobile!" But, I did! Being able to watch him conquer milestone after milestone each month is such a sigh of relief and it means more than I can put into words. I am very blessed.
The teeth just keep popping thru. I've always said the only thing about parenting that I don't enjoy is teething. And that's the truth! But this lil' booger wakes up practically every week with another one skimming the gumline. Tooth total is now 5. Three on top and two on bottom. I give him another 3 days and the 4 tooth will emerge on top bringing the total to 6. Getting more teeth has really helped him in the eating department. He's doing much better and he's gaining confidence everyday. It's evaluated that he's eating and drinking at an 8-9 month old skill level. Not bad, but there's definately room for improvement!
His first Feeding Clinic appointment is Wednesday, Oct. 8th. Attending the appointment will be an OT who specialized in feeding issues, our Nutritionist, and a Psychologist. This will be the first of many visits, and we are excited to start feeding therapy.
His next cardiologist appointment is the following Wednesday, Oct. 15th. We'll have an echo and we'll better know how stable and well-functioning his heart is six month post-Glenn. Pray for a healthy echo and overall physical check.
I will post an update after those appointments to let everyone know how they went. Thank you all for your continued thoughts and prayers. We still feel them and we believe that you're getting thru to the Man upstairs!
There is so much to update about!
Tyler started officially crawling on September 12, 2008 and he loves it! Shhh... it's a secret, but so does Mommy! I never thought that (as a parent) I would look forward to the day when I could say, "My baby is mobile!" But, I did! Being able to watch him conquer milestone after milestone each month is such a sigh of relief and it means more than I can put into words. I am very blessed.
The teeth just keep popping thru. I've always said the only thing about parenting that I don't enjoy is teething. And that's the truth! But this lil' booger wakes up practically every week with another one skimming the gumline. Tooth total is now 5. Three on top and two on bottom. I give him another 3 days and the 4 tooth will emerge on top bringing the total to 6. Getting more teeth has really helped him in the eating department. He's doing much better and he's gaining confidence everyday. It's evaluated that he's eating and drinking at an 8-9 month old skill level. Not bad, but there's definately room for improvement!
His first Feeding Clinic appointment is Wednesday, Oct. 8th. Attending the appointment will be an OT who specialized in feeding issues, our Nutritionist, and a Psychologist. This will be the first of many visits, and we are excited to start feeding therapy.
His next cardiologist appointment is the following Wednesday, Oct. 15th. We'll have an echo and we'll better know how stable and well-functioning his heart is six month post-Glenn. Pray for a healthy echo and overall physical check.
I will post an update after those appointments to let everyone know how they went. Thank you all for your continued thoughts and prayers. We still feel them and we believe that you're getting thru to the Man upstairs!
Thursday, September 11, 2008
Remembering 9/11 on this 7th Anniversary
Driving Jay to Preschool today, Alan Jackson's "Where were you" song came on the radio. As I wiped a few tears from my eyes, I quickly remembered what I was doing when those horrid attacks occured on our American soil. I am so thankful for all of the couragous men and women who have served and currently serve in the Armed Forces. My heart still goes out to the many innocent victims who lost their life that day and their families who were left to carry on.
God Bless America!
God Bless America!
Saturday, August 23, 2008
One Year ALREADY?!
You've sure came a long way...
Just look at your progress!
As you celebrate your 1st birthday,
we wish and pray for many more
years of laughter, hugs and kisses!
Happy Birthday Tyler-Boo!
Love,
Mommy, Daddy & Jarrett
Friday, August 22, 2008
Finally an Update . . .
Well since my last post, Tyler's gotten his top two teeth, and he's working on more now... AND the little boy is trying to blow kisses!!! So sweet!!!
Still not much to say in the crawling/walking dept., but he does do a funny side slide. Since he's totally aware of the g-tube button, he'll get on his right side and scootch. Reaching one arm out and pushing with his legs. Doesn't get too far yet (maybe a few inches), but hey, he's still improving the motion. LOL!
Let's see... We have his consult appointment for the circumcision on Sept. 4th and his first Feeding Clinic appointment is scheduled for Oct. 8th.
Tomorrow is his First Birthday! Both of us can't be more proud of the boy whom we watched struggle for life, yet grow & excel throughout the past 12 months. We love you Tyler!
Also, big brother, Jarrett, started Preschool on the 19th and he's enjoying it. Whenever it's time to go pick him back up, Tyler gets so excited! Tyler must miss all the noise and commotion! I mean, who wouldn't, right?!
Other than this, Andrew and I are preparing for his big Birthday Party / Appreciation Dinner on the 31st! We've got lots of good food on the menu, but the best treat of all will be watching Tyler ham it up for everyone!
Still not much to say in the crawling/walking dept., but he does do a funny side slide. Since he's totally aware of the g-tube button, he'll get on his right side and scootch. Reaching one arm out and pushing with his legs. Doesn't get too far yet (maybe a few inches), but hey, he's still improving the motion. LOL!
Let's see... We have his consult appointment for the circumcision on Sept. 4th and his first Feeding Clinic appointment is scheduled for Oct. 8th.
Tomorrow is his First Birthday! Both of us can't be more proud of the boy whom we watched struggle for life, yet grow & excel throughout the past 12 months. We love you Tyler!
Also, big brother, Jarrett, started Preschool on the 19th and he's enjoying it. Whenever it's time to go pick him back up, Tyler gets so excited! Tyler must miss all the noise and commotion! I mean, who wouldn't, right?!
Other than this, Andrew and I are preparing for his big Birthday Party / Appreciation Dinner on the 31st! We've got lots of good food on the menu, but the best treat of all will be watching Tyler ham it up for everyone!
Wednesday, July 30, 2008
"Clap Pat Clap Slap"
Tyler can CLAP now, and Oh My Goodness... He's a clapping fool!
You say, "Clap" - he'll clap.
You say, "Good Job" - he'll clap.
You say, "Yay, hurray" - he'll clap.
If he sees you clap - he'll clap.
It's a ruckus around here! He's such a happy and joyous baby!
You say, "Clap" - he'll clap.
You say, "Good Job" - he'll clap.
You say, "Yay, hurray" - he'll clap.
If he sees you clap - he'll clap.
It's a ruckus around here! He's such a happy and joyous baby!
Thursday, July 24, 2008
Jarrett's Echo Results . . .
Let me preface that the Heart Sonographer performed a very indepth Echo on Monday, and as I sat there holding Jarrett's hand, I couldn't help but assume she'd found something.
Well, I got the results phonecall tonite from Dr. Yu, our Pediatrician for the boys, and I am thrilled to quote... "Excellent heart condition. Perfectly healthy and normal. Great rhythms, great pressures, great anatomy."
So happy to know that he REALLY IS a healthy-hearted child! Now, if we could EVER figure out why Tyler's heart is a mystery in our family.
Well, I got the results phonecall tonite from Dr. Yu, our Pediatrician for the boys, and I am thrilled to quote... "Excellent heart condition. Perfectly healthy and normal. Great rhythms, great pressures, great anatomy."
So happy to know that he REALLY IS a healthy-hearted child! Now, if we could EVER figure out why Tyler's heart is a mystery in our family.
Saturday, July 19, 2008
Jarrett
Big brother Jarrett is scheduled for an ECHO at Children's Mercy Hospital on Monday, July 21st at 10:30am. As soon as we know results I will post them. We have never suspected him of any cardiac conditions/problems, however since the birth and diagnosis of Tyler, we wanted him screened 'just so we know'...
Please keep him in your thoughts on Monday.
Please keep him in your thoughts on Monday.
Thursday, July 17, 2008
Cardiologist Appointment
Went to his Cardiologist visit yesterday, and they did an ECHO while we were there; plus other info.
While the overall result of his ECHO looked good, one frame showed there is a chance his aortic arch is starting to narrow again (like it had before his Cath in February). It's unknown whether this is somthing that will correct itself as he grows or if it's a rebuilding of scar tissue that'll need medical intervention to correct in the coming months (6mos or so).
Dr. Kaine wasn't concerned at this time, as all of Tyler's pulses were nice and strong. We go back for another cardiologist appointment on Oct. 15th, 2008.
During our office visit with the Cardiologist and Nurse Practicioner, they gave the 'all clear, go-ahead' for Andrew and I to schedule Tyler's circumcision. We're hoping we can get in sometime late September/beginning October.
Also, we visited with the Nutrition Clinic and discussed options and a prospective plan for what they'll do when he turns 1 year old. There was talk of our Nutritionist making a referral to the Feeding Clinic so we could begin receiving an aggressive approach to weaning from the G-tube. At this point in time, I still haven't received a phonecall from the Feeding Clinic to schedule his first appointment.
Other than all of this, weight gain is adequate for his condition - currently weighing in at 16 lbs 9 oz - and same goes for his length. He is a very proportionate boy, just on the smaller size for his age.
While the overall result of his ECHO looked good, one frame showed there is a chance his aortic arch is starting to narrow again (like it had before his Cath in February). It's unknown whether this is somthing that will correct itself as he grows or if it's a rebuilding of scar tissue that'll need medical intervention to correct in the coming months (6mos or so).
Dr. Kaine wasn't concerned at this time, as all of Tyler's pulses were nice and strong. We go back for another cardiologist appointment on Oct. 15th, 2008.
During our office visit with the Cardiologist and Nurse Practicioner, they gave the 'all clear, go-ahead' for Andrew and I to schedule Tyler's circumcision. We're hoping we can get in sometime late September/beginning October.
Also, we visited with the Nutrition Clinic and discussed options and a prospective plan for what they'll do when he turns 1 year old. There was talk of our Nutritionist making a referral to the Feeding Clinic so we could begin receiving an aggressive approach to weaning from the G-tube. At this point in time, I still haven't received a phonecall from the Feeding Clinic to schedule his first appointment.
Other than all of this, weight gain is adequate for his condition - currently weighing in at 16 lbs 9 oz - and same goes for his length. He is a very proportionate boy, just on the smaller size for his age.
Wednesday, July 9, 2008
Woot! Woot!
Are you ready for some great news? . . .
11 mos. old and Tyler is FINALLY bearing weight on his legs! He is able to go into the standing position from the sitting position as long as you support him under his arms! I can't believe this!
To some this may sound so minor, but to us it's HUGE!
"Work those leg muscles, boy!"
11 mos. old and Tyler is FINALLY bearing weight on his legs! He is able to go into the standing position from the sitting position as long as you support him under his arms! I can't believe this!
To some this may sound so minor, but to us it's HUGE!
"Work those leg muscles, boy!"
Monday, July 7, 2008
Humor for the Perfectionist Parent:
A Mom's Top 10 Reasons to Run Away From Home
10. In spite of being hauled from room to room like a ball and chain, your toddler refuses to release his grip from your left ankle.
9. When your husband leaves on a business trip, you don't send him off with "I love you," but with, "Save yourself!"
8. The dog just chased the cat up and over the couch, toppling the eight piles of clean laundry you had just folded and were putting away.
7. Telling your family, "But I just fed you yesterday!" will not make them stop demanding breakfast.
6. After accepting a package from the cute new UPS guy, you realize a Cheerio is stuck to your chin.
5. Coming to you for comfort in the night, your sick preschooler pukes in your bed.
4. Your preteen daughter begins criticizing your makeup.
3. Opening the door to your car, you smell sour milk from a spill and wonder where it is; sitting down, you find out.
2. The kids ravaged your secret stash of chocolate.
And the #1 reason to run away from home is...
1. The only romantic thrill in your daily life is watching "Mr. Rodgers" take off his sport coat. ("Yeah, baby!")
A Mom's Top 10 Reasons NOT to Run Away From Home
10. The only piece of luggage with a working zipper is your preschooler's "Goin' to grandma's" mini-suitcase.
9. The last bit of cash from your purse was spent on Happy Meals at McDonalds.
8. You are only able to run if you are also pushing a grocery cart and toting a baby on one hip.
7. You promised your husband you'd take him with you, but he's still not home from work yet.
6. Your favorite pair of jeans that make your hips look quasi-normal are still in the dryer.
5. You suddenly recall scenes from scary movies about women who travel alone.
4. Your teenager just took the only car in the driveway with gas in the tank.
3. You just remembered you have a mandatory meeting at work tomorrow.
2. The dog wouldn't understand.
And the #1 reason not to run away from home is...
1. It will still be there when you get back.
(Excerpt from Balanced Living for Perfectionists, author Debi Stack)
10. In spite of being hauled from room to room like a ball and chain, your toddler refuses to release his grip from your left ankle.
9. When your husband leaves on a business trip, you don't send him off with "I love you," but with, "Save yourself!"
8. The dog just chased the cat up and over the couch, toppling the eight piles of clean laundry you had just folded and were putting away.
7. Telling your family, "But I just fed you yesterday!" will not make them stop demanding breakfast.
6. After accepting a package from the cute new UPS guy, you realize a Cheerio is stuck to your chin.
5. Coming to you for comfort in the night, your sick preschooler pukes in your bed.
4. Your preteen daughter begins criticizing your makeup.
3. Opening the door to your car, you smell sour milk from a spill and wonder where it is; sitting down, you find out.
2. The kids ravaged your secret stash of chocolate.
And the #1 reason to run away from home is...
1. The only romantic thrill in your daily life is watching "Mr. Rodgers" take off his sport coat. ("Yeah, baby!")
A Mom's Top 10 Reasons NOT to Run Away From Home
10. The only piece of luggage with a working zipper is your preschooler's "Goin' to grandma's" mini-suitcase.
9. The last bit of cash from your purse was spent on Happy Meals at McDonalds.
8. You are only able to run if you are also pushing a grocery cart and toting a baby on one hip.
7. You promised your husband you'd take him with you, but he's still not home from work yet.
6. Your favorite pair of jeans that make your hips look quasi-normal are still in the dryer.
5. You suddenly recall scenes from scary movies about women who travel alone.
4. Your teenager just took the only car in the driveway with gas in the tank.
3. You just remembered you have a mandatory meeting at work tomorrow.
2. The dog wouldn't understand.
And the #1 reason not to run away from home is...
1. It will still be there when you get back.
(Excerpt from Balanced Living for Perfectionists, author Debi Stack)
Friday, July 4, 2008
Happy 4th of July!
We always go to Fort Leavenworth for their annual 4th of July celebration at Merritt Lake. The weather is supposed to be absolutely beautiful... and I can't be more excited to watch Tyler experience his first fireworks show!
Hope you and your loved ones have an awesome holiday!
Hope you and your loved ones have an awesome holiday!
Thursday, June 19, 2008
Sitting!
Tyler can totally sit up unattended all by himself! He's been so close for awhile, and he's really doing it now!
He's also starting to spend more and more time on his tummy and can handle (happily) 5-7 minutes of it. We've also been working on trying to get him to bear weight on his legs, because he has this strange adversion to want to stand up. I don't like knowing that my 10 month old still isn't able to freely move around on his own, but everyone who's evaluated him says it's completely normal for us to notice setbacks of gross motor development in Tyler's case. All we can do is work with him, and one day I suppose it will all click and he'll have enough strength and will power to want to conquer it all. I mean, he's just now sitting up (something that a healthy 4 month old can do) so maybe in another six months (when he's 16-17 months old) we'll be seeing him crawl and/or walk.
Parents As Teachers came today. We had a fun time and Bobbi loved what she saw! She is impressed with how well he's acting, communicating, and moving in only three weeks since surgery. Our next appointment with her is July 18th.
He's also starting to spend more and more time on his tummy and can handle (happily) 5-7 minutes of it. We've also been working on trying to get him to bear weight on his legs, because he has this strange adversion to want to stand up. I don't like knowing that my 10 month old still isn't able to freely move around on his own, but everyone who's evaluated him says it's completely normal for us to notice setbacks of gross motor development in Tyler's case. All we can do is work with him, and one day I suppose it will all click and he'll have enough strength and will power to want to conquer it all. I mean, he's just now sitting up (something that a healthy 4 month old can do) so maybe in another six months (when he's 16-17 months old) we'll be seeing him crawl and/or walk.
Parents As Teachers came today. We had a fun time and Bobbi loved what she saw! She is impressed with how well he's acting, communicating, and moving in only three weeks since surgery. Our next appointment with her is July 18th.
Wednesday, June 4, 2008
Cardiologist appt. was today . . .
I took Tyler to CMH Cardiac Clinic at 1:30pm today for his first post-op visit with Dr. Kaine since the Glenn, and thankfully there is nothing major to report! We had an ECG done, but not an ECHO. I believe they are going to wait until his July appointment to do that.
I really had no particular compaints or concerns for the doctor today. Tyler's sweatiness has decreased a great deal when sleeping or eating and his activity level is good. He's not fussy and I really think he's over the hump of being too awful sore. He was cheerful and happy during the appointment and even caught a short nap while we waited to be seen!
His current medications include Digoxin 0.6 mL b.i.d., Captopril 5 mL three times/day, Aspirin 20 mg daily, Lasix 0.7 mL one time/day, and Zantac 3.3 mL two times/day.
Today he weighed 7.126 kg (15 lbs 12 oz). His pulse was 111, respirations 24, oxygen saturation was 80, and blood pressure 107/63. He is relatively pink and well perfused and his lungs were clear. Femoral and peripheral pulses were all easily felt! His incision as a whole is healing well. The part of the incision that was infected with pseudomonas has a little bit of delayed healing compared to the rest, but is still healing very well. So in a nutshell, Tyler basically had a great appointment, and Dr. Kaine is pleased with Ty's Glenn result.
I really had no particular compaints or concerns for the doctor today. Tyler's sweatiness has decreased a great deal when sleeping or eating and his activity level is good. He's not fussy and I really think he's over the hump of being too awful sore. He was cheerful and happy during the appointment and even caught a short nap while we waited to be seen!
His current medications include Digoxin 0.6 mL b.i.d., Captopril 5 mL three times/day, Aspirin 20 mg daily, Lasix 0.7 mL one time/day, and Zantac 3.3 mL two times/day.
Today he weighed 7.126 kg (15 lbs 12 oz). His pulse was 111, respirations 24, oxygen saturation was 80, and blood pressure 107/63. He is relatively pink and well perfused and his lungs were clear. Femoral and peripheral pulses were all easily felt! His incision as a whole is healing well. The part of the incision that was infected with pseudomonas has a little bit of delayed healing compared to the rest, but is still healing very well. So in a nutshell, Tyler basically had a great appointment, and Dr. Kaine is pleased with Ty's Glenn result.
Sunday, June 1, 2008
Heart Walk
A special thank you goes out to the following people for joining Tyler yesterday as they participated with us in his VERY FIRST Greater KC AHA Heart Walk! We couldn't have asked for a better turn-out in support of our HLHS kiddo. It was so much fun and we're already looking forward to next year! (Oh, by the way, we are totally doing the 4 mile trail in 2009...)
Allison
Katy Crookham
Cari Kelly
Rebecca Kelly
Chad Esslinger
Kelly Breuer-Esslinger
Ron Esslinger
Jenny Kelly
Brenn Kelly
Jill Breuer
Kathleen Gibson
Debbie Breuer
Chambre Riegel
Bob Williams
Julie Williams
Jamie Urton
Zach Urton
Sharon Nowak
Steve Nowak
Brandy Russell
Christina Smith
Ginny Reischman
Sarah Breuer
Mary Nutter
Big brother Jarrett
Mommy & Daddy
To everyone who made a donation on Tyler's AHA website or contributed by cash/check for this year's American Heart Association Heart Walk fundraiser, we'd like to thank you again! We were able to raise a total of $2,690 and it couldn't have been possible without you!
Allison
Katy Crookham
Cari Kelly
Rebecca Kelly
Chad Esslinger
Kelly Breuer-Esslinger
Ron Esslinger
Jenny Kelly
Brenn Kelly
Jill Breuer
Kathleen Gibson
Debbie Breuer
Chambre Riegel
Bob Williams
Julie Williams
Jamie Urton
Zach Urton
Sharon Nowak
Steve Nowak
Brandy Russell
Christina Smith
Ginny Reischman
Sarah Breuer
Mary Nutter
Big brother Jarrett
Mommy & Daddy
To everyone who made a donation on Tyler's AHA website or contributed by cash/check for this year's American Heart Association Heart Walk fundraiser, we'd like to thank you again! We were able to raise a total of $2,690 and it couldn't have been possible without you!
Friday, May 30, 2008
Bottle news!
I've been reluctant to even post this in fear it would jinx him, but... Since Tuesday evening, Tyler has been attempting to drink from a bottle! This is something he chose to do ON HIS OWN. Long story short, he was showing very strong signs that he wanted a bottle so I made him a 2 ounce one... and before I knew it, it was down to 1.5 ounces. No leaks on his clothes, nothing... so it had to have went in his mouth and down his throat, right?! Now, there's no actual sucking going on, BUT he's putting it in his mouth and closing his mouth around the nipple, kind of a biting motion - whatever he's doing is still allowing him to pull out liquid. Never before could he handle anything coming out of it... he'd freak, and gag, oh he was a mess! But not now. Yay! This is a HUGE milestone people!
He weighs 15 1/2 pounds now, all NORMAL weight, NOT water retention weight any more that he's carried from surgery. So basically, he's gained a half of a pound in a month, going by his pre-op weight on April 28th. In another perspective, we were discharged on 5-5-08 and he weighed a little over 16 pounds, so during the whole surgery recovery period we've lost all that - getting back down to a tad below pre-op weight - and now he's gaining it back nicely. I have no idea how long he is.... however, I am pretty sure pre-op height was 27 inches or close to it.
Heart Walk tomorrow! Woot! I'll be ready for a nap at Noon!
He weighs 15 1/2 pounds now, all NORMAL weight, NOT water retention weight any more that he's carried from surgery. So basically, he's gained a half of a pound in a month, going by his pre-op weight on April 28th. In another perspective, we were discharged on 5-5-08 and he weighed a little over 16 pounds, so during the whole surgery recovery period we've lost all that - getting back down to a tad below pre-op weight - and now he's gaining it back nicely. I have no idea how long he is.... however, I am pretty sure pre-op height was 27 inches or close to it.
Heart Walk tomorrow! Woot! I'll be ready for a nap at Noon!
Tuesday, May 27, 2008
Almost a week later -
And Tyler is still improving each and every day. He is starting to fight sleep during the day, just like any typical 9 monther, because he's wanting to stay awake as to not miss the action. Good thing he still sleeps like a champ at night! He laughs so hard anytime Jarrett pays him attention and he loves being sat in his walker even though the whole 'walking' thing is a concept he hasn't learned yet. Instead, big brother pushes him around the house! Tyler is also starting to practice eating again since the Glenn and getting his 'all clear' from the xray last week. He seems to be taking hold of the idea and eating somewhat better than he did before surgery; but it could also just be Mommy being extra hopeful. Either way, it'll be a long road, since at this point eating and swallowing properly will have to be a taught and learned thing. I know it's going to take time and I have to remain optimistic and keep up the repetition.
This Saturday, Andrew and I, along with a few family and friends, will be walking in the Greater KC Heart Walk! I can't believe the end of May is already here... as it seems just like yesterday we were nose-deep in the Donation Drive. We're so excited! If we get a few pictures, I'll post them after the event.
This Saturday, Andrew and I, along with a few family and friends, will be walking in the Greater KC Heart Walk! I can't believe the end of May is already here... as it seems just like yesterday we were nose-deep in the Donation Drive. We're so excited! If we get a few pictures, I'll post them after the event.
Wednesday, May 21, 2008
Chest xray results . . .
The chest xray couldn't have been any better! It showed his chest cavity and side walls being completely clear! No sign of lymphatic leakage. I think the kid is finally on the road to a healthy recovery. As long as no other signs or symptoms show up in the next week, he should be good to go. We can resume a lifestyle that allows us to take him OUT IN PUBLIC - AS A FAMILY on the 29th! I can't believe I am actually able to say that after 9 months!
His infection on the incision site seems to be looking better and better each day.
Thank you for keeping him in your thoughts and prayers.
His infection on the incision site seems to be looking better and better each day.
Thank you for keeping him in your thoughts and prayers.
Monday, May 19, 2008
Big day ahead . . .
So, today was Ty's last dose of Cipro for the Pseudomonas infection and the first day back on his previous formula, Enfamil w/ Lipil. The big day will be on Wednesday, when we'll go to Children's Mercy to have a chest xray. The Radiologist, Tyler's Heart Surgeon and a CV Surgery Nurse will be reviewing it's results to decide if he is 'healed' from the Chylothorax. We're praying with all our heart that being back on the Enfamil doesn't cause him any problems over the next two days. Only time will tell.
Monday, May 12, 2008
Pseudomonas
So his infection is called: pseudomonas. It's a hospital germ. Ummm, I have to say I'm very upset (for lack of better words) about it actually. Lisa Laddish, CV surgery, said it's caused by a nurse using a contaminated glove while changing an incision (or) blake drain dressing or better yet... an infected suture(s) that they used to sew up the incision layers inside of him after open-heart surgery.
Pretty much, the infection and situation could have went from bad to worse, in a matter of hours, if we hadn't caught it as quick as we did.
The downside is that the antibiotic cost us $98.27, after insurance, for something the hospital caused. He'll stay on the Cipro (antibiotic - super strong stuff by the way) for 10 days, 2x day.
Pretty much, the infection and situation could have went from bad to worse, in a matter of hours, if we hadn't caught it as quick as we did.
The downside is that the antibiotic cost us $98.27, after insurance, for something the hospital caused. He'll stay on the Cipro (antibiotic - super strong stuff by the way) for 10 days, 2x day.
Friday, May 9, 2008
Incision site infection and other info . . .
Went in to CMH yesterday for a chest xray (which looked good) and also to have his staples removed. The night before, I noticed the skin on and around his bottom five staples turn from a light pink to a bright red. So close to coming in to have them removed, it wasn't worth calling in there at 9pm... Anyways, Tyler and I get there and CV Surgery nurse, Lisa Laddish, asked how things were going and I told her everything is great but his bottom five staples. I told her I did the betadine wipes 2x day and that it just suddenly appeared. After she pulled those staples a little bit of a white-yellowish creamy ooze came out. So she applied light pressure and just a little bit more came out. I asked her if we could swab it and send it to the lab (me being worried it could be staph or the like) Lab will take 72 hours for the culture to grow and be identified, which would put us at early Monday morning to find out the seriousness of this. Lisa thinks it could just be Tyler's skin fighting irriation from the internal sutures. Because of that, she didn't want to apply any steri-strips to the bottom inch of his incision, just 'in case' the infection wants to surface causing his incision to open up. If that happens I have to call immediately and take him in. She put him on an antibiotic and also a prescription topical cream. I hope the antibiotic works its magic fast!
Other than this ordeal, Tyler is doing great!
After his appointments, I went upstairs to 4 Sutherland (the Heart Floor) to visit Suzie and little Garrett Jones. Garrett was born a week before Tyler with the exact same heart defect. They live in Olathe. We met eachother during the boys' Norwoods and became an instant support system for eachother, and from that our friendship bloomed. She has two older daughters, 7 & 5. Garrett is doing so good! Flying thru this surgery in fact. His Glenn was on Monday and he'll possibly be coming home this afternoon... so 4 days post-op!
On a sadder note, it is with great love that I express deepest sympathy to Amy & Nate Boeckman and big brother Kaden. On May 7th, their 3 1/2 month old daughter, Ava, passed away at CMH. Ava was also diagnosed with HLHS and was status post Norwood, but was yet to come home due to some trouble of getting off the ventilator. Earlier this week however, she was successfully extubated, and things were finally looking up for her! But on Wednesday, things took a turn for the worst. I met Amy and Nate thru her sister-in-law, who somehow came across Tyler's blog. Once again, there was an instant connection because there we were, both parents of a child diagnosed with HLHS. There is nothing better than being able to talk to another 'heart parent'... especially of the same CHD. Last week when we were in PICU for Tyler's Glenn, I was blessed to be able to meet Ava in person while talking to and learning more about Amy. Come to find out, she and I have more in common than just HLHS kiddos. Let me just put it this way... it's a small world. Kaden and Ava couldn't ask for a better mother! She is such a wonderful person. I wish you and your family peace as you make it thru this difficult time. (((HUGE HUGS, MY FRIEND, HUGE HUGS)))
Other than this ordeal, Tyler is doing great!
After his appointments, I went upstairs to 4 Sutherland (the Heart Floor) to visit Suzie and little Garrett Jones. Garrett was born a week before Tyler with the exact same heart defect. They live in Olathe. We met eachother during the boys' Norwoods and became an instant support system for eachother, and from that our friendship bloomed. She has two older daughters, 7 & 5. Garrett is doing so good! Flying thru this surgery in fact. His Glenn was on Monday and he'll possibly be coming home this afternoon... so 4 days post-op!
On a sadder note, it is with great love that I express deepest sympathy to Amy & Nate Boeckman and big brother Kaden. On May 7th, their 3 1/2 month old daughter, Ava, passed away at CMH. Ava was also diagnosed with HLHS and was status post Norwood, but was yet to come home due to some trouble of getting off the ventilator. Earlier this week however, she was successfully extubated, and things were finally looking up for her! But on Wednesday, things took a turn for the worst. I met Amy and Nate thru her sister-in-law, who somehow came across Tyler's blog. Once again, there was an instant connection because there we were, both parents of a child diagnosed with HLHS. There is nothing better than being able to talk to another 'heart parent'... especially of the same CHD. Last week when we were in PICU for Tyler's Glenn, I was blessed to be able to meet Ava in person while talking to and learning more about Amy. Come to find out, she and I have more in common than just HLHS kiddos. Let me just put it this way... it's a small world. Kaden and Ava couldn't ask for a better mother! She is such a wonderful person. I wish you and your family peace as you make it thru this difficult time. (((HUGE HUGS, MY FRIEND, HUGE HUGS)))
Tuesday, May 6, 2008
First full day home
Well it started out as a pretty cruddy day.
Last night, Tyler was constantly fussy and barely slept at all, which is totally unlike him.
Then Jarrett woke up at 5:30am unhappy and not wanting Daddy to go to work.
Around 9am today, Tyler started getting irritated and screaming for what I thought was just 'no reason'... BUT there WAS a reason.
Come to find out, the Portagen formula recipe the discharging nurse told me to use was totally incorrect. She was having me prepare it to 30-kcal which is NOT right! Especially for an 8 month old baby.
When the doctors started him on it in the hospital it was only prepared to 20-kcal. So as he was getting the 30-kcal feedings last night and this morning, it was just too rich for his gut, causing him to get a severe upset tummy.
I finally got the situation resolved after calling the Nutrition Department at Children's Mercy Hospital today. The dietitian who helped me was appalled with the situation that resulted from the discharging nurse's lack of knowledge on Portagen and the fact that his dietitian while inpatient didn't do their own discharge.
However, since about 4pm this afternoon, he's been back to his happy self again. In my opinion, a mistake like that shouldn't have been made.
Last night, Tyler was constantly fussy and barely slept at all, which is totally unlike him.
Then Jarrett woke up at 5:30am unhappy and not wanting Daddy to go to work.
Around 9am today, Tyler started getting irritated and screaming for what I thought was just 'no reason'... BUT there WAS a reason.
Come to find out, the Portagen formula recipe the discharging nurse told me to use was totally incorrect. She was having me prepare it to 30-kcal which is NOT right! Especially for an 8 month old baby.
When the doctors started him on it in the hospital it was only prepared to 20-kcal. So as he was getting the 30-kcal feedings last night and this morning, it was just too rich for his gut, causing him to get a severe upset tummy.
I finally got the situation resolved after calling the Nutrition Department at Children's Mercy Hospital today. The dietitian who helped me was appalled with the situation that resulted from the discharging nurse's lack of knowledge on Portagen and the fact that his dietitian while inpatient didn't do their own discharge.
However, since about 4pm this afternoon, he's been back to his happy self again. In my opinion, a mistake like that shouldn't have been made.
Monday, May 5, 2008
OMG! We're HOME!
I absolutely cannot believe this! 6 days post-op!
And the best part is the hospital provided enough Portagen formula to get him fed for the amount of time we'll need to be on it due to the chylothorax.
We go back on Thursday to get his staples out... other than that he had a good result on chest xray this morning and he also had an echo which showed the new physiology of his heart working just fine!
I captured these pics right after we got home before we took a nap-
I don't think either of them could have been any happier!
And the best part is the hospital provided enough Portagen formula to get him fed for the amount of time we'll need to be on it due to the chylothorax.
We go back on Thursday to get his staples out... other than that he had a good result on chest xray this morning and he also had an echo which showed the new physiology of his heart working just fine!
I captured these pics right after we got home before we took a nap-
I don't think either of them could have been any happier!
Sunday, May 4, 2008
Update for Sunday, May 4th. . .
All numbers from Tyler's blood draw from yesterday came back in the 'normal' range! WOOT! He's been getting a daily chest xray each morning and they seem to be improving... another WOOT! The Chylothorax is completely under control now (not gone, just under control) after a day and a half of being on the Portagen... so CV surgery nurse, Lisa Laddish, pulled his Blake drain today! Last WOOT! The drainage coming from his chest had slowed enough and cleared enough that she said it was time.
He isn't in as much pain since it was removed and he's been so happy again today. What a trooper! No word yet on when we'll be able to come home, I think it's just a matter of time now to monitor daily chest xrays and find enough Portagen formula to send us home with until we can make the $$$ purchase ourselves.
Thanks for all the support! It's been a blessing to know he has a bunch of people praying and has really given me reason to smile when he has those 'bad days'...
He isn't in as much pain since it was removed and he's been so happy again today. What a trooper! No word yet on when we'll be able to come home, I think it's just a matter of time now to monitor daily chest xrays and find enough Portagen formula to send us home with until we can make the $$$ purchase ourselves.
Thanks for all the support! It's been a blessing to know he has a bunch of people praying and has really given me reason to smile when he has those 'bad days'...
Saturday, May 3, 2008
Picture overload!
Ok, so I took a bunch of pictures of him today... aside from the Chylothorax, he felt great today! (And it showed!) Enjoy!
Hangin' out!
Tyler continues to do well pulling the extra fluid off of his body. He is looking more and more like his old self again. CV surgery nurse came by yesterday to remove his dressing over his chest staples and he was taken off of all monitors this morning. The transport team came for a blood draw this morning to check electrolytes... since he's a hard stick, the lady from lab didn't want to try. And as far as the Chylothorax goes, it seems like his body is adjusting to the Portagen formula! The drainage from his Blake isn't as cloudy as yesterday. Andrew and I listened in on Cardiac Rounds this morning, and it was explained to us that as long as the drainage continues to clear up and then eventually stop all together, the Blake drain will be pulled. However, we'll continue Portagen for 3-8 weeks to give the injured portion of his lymphatic system time to heal.
After that time, we'll be given the 'go-ahead' to restart his Enfamil w/ Lipil formula knowing he'll have a chest xray after about three days to see if it's collecting in his chest cavity again. If the xray comes back clean, then we know the lymphatic system is healed... but if the xray shows fluid, then we know we have to get it out and start Portagen again. So we'll see how this all pans out. I just know that my lil' guy will get thru this!
Other than all of that, he's still a great sleeper at night and loves his silky blankie. Good thing we brought it. He's feeling really good today it seems; playing with the few toys we brought, starting to laugh again, and move his arms upwards as if to say "Pick me up!" We've been given the ok to start holding him again to get him moving so nothing settles in his lungs or chest cavity.
I'll post a few pictures later on tonite as I'm going to get him dressed for the first time since surgery. What a fun day! I hope it continues to be such a positive day for all of us!
After that time, we'll be given the 'go-ahead' to restart his Enfamil w/ Lipil formula knowing he'll have a chest xray after about three days to see if it's collecting in his chest cavity again. If the xray comes back clean, then we know the lymphatic system is healed... but if the xray shows fluid, then we know we have to get it out and start Portagen again. So we'll see how this all pans out. I just know that my lil' guy will get thru this!
Other than all of that, he's still a great sleeper at night and loves his silky blankie. Good thing we brought it. He's feeling really good today it seems; playing with the few toys we brought, starting to laugh again, and move his arms upwards as if to say "Pick me up!" We've been given the ok to start holding him again to get him moving so nothing settles in his lungs or chest cavity.
I'll post a few pictures later on tonite as I'm going to get him dressed for the first time since surgery. What a fun day! I hope it continues to be such a positive day for all of us!
Friday, May 2, 2008
A Prayer for Healing and Hope
Almighty God, we give You thanks,
for You are the Creator
of all life and goodness.
We praise You for the world
You have made for us
to build up and enjoy.
Loving God, help us to be
faithful heralds of Healing and Hope.
Grant us the awareness of the healing
needs of those around us
and the compassion to respond
willingly to those needs.
We ask this through Christ,
our Healer and Source of all Hope.
Amen
Not a good day . . .
We were moved up to the Heart Floor yesterday late afternoon, because Tyler actually peed a few times; and for the most part, his recovery thus far had been rather uneventful. Unfortunately, Tyler has made me a bit of a skeptic when it comes to doctors and nurses try to comforting me with odds… Because if it’s a complication that can happen during the recovery process, Tyler will want to play with it!
After yesterday, a day spent of gradually introducing his feedings again, this morning Tyler’s nurse noticed a cloudy substance draining thru his Blakes. It is being coined by his surgeon and attending CV surgery nurses as Chylothorax. This is a risk of open heart surgery, but whether or not it occurred during the actual surgery process or not is unknown. One guess could be that it is the result of trying to get a central line in and they must have pierced a lymphatic vessel. The second guess could be that during surgery, part of his nearby lymphatic pockets were ‘nicked’ causing fat from Tyler’s formula to drip/seep into his chest cavity.
Chylothorax is a condition that results from lymphatic fluid (Chyle) accumulating in the pleural cavity. Its cause is usually leakage from the thoracic duct or one of the main lymphatic vessels that drain to it. Simply what’s happening is this: Chyle, a form of fat found in your diet (in his formula), is draining from the Blake drains in his chest (which means it’s starting to surround his lungs) and it’s causing him to experience a diminished lung capacity, making it harder to breath and keep his oxygen saturation above 70.
From what we’ve been told and what information we’ve read so far, is that it could take anywhere from 1 week to 12 weeks to fully heal from this and that it can be hard to manage.
To correct Chylothorax, he has been placed on a formula called Portagen. The fats found in Portagen have already been broken down, making it next to impossible for the fat to continue seeping thru. It is unknown how soon or how long it will take Tyler to recover from this condition, but should recover nonetheless – eventually. Hopefully the vessel that is injured will repair itself quickly and we can resume his regular formula again.
I am unsure of the exact amount of liquid surrounding his lungs right now that’s just waiting to come out, but we’ll know if the Chylothorax is getting worse if his weight jumps significantly overnight and/or if his respirations continue to rise.
Please, please I beg of you all, to keep my baby boy in your prayers to make this condition go away. Personally, I’d much rather be back to just praying for pee. It’s been a very stressful day… God only knew this day was coming.
After yesterday, a day spent of gradually introducing his feedings again, this morning Tyler’s nurse noticed a cloudy substance draining thru his Blakes. It is being coined by his surgeon and attending CV surgery nurses as Chylothorax. This is a risk of open heart surgery, but whether or not it occurred during the actual surgery process or not is unknown. One guess could be that it is the result of trying to get a central line in and they must have pierced a lymphatic vessel. The second guess could be that during surgery, part of his nearby lymphatic pockets were ‘nicked’ causing fat from Tyler’s formula to drip/seep into his chest cavity.
Chylothorax is a condition that results from lymphatic fluid (Chyle) accumulating in the pleural cavity. Its cause is usually leakage from the thoracic duct or one of the main lymphatic vessels that drain to it. Simply what’s happening is this: Chyle, a form of fat found in your diet (in his formula), is draining from the Blake drains in his chest (which means it’s starting to surround his lungs) and it’s causing him to experience a diminished lung capacity, making it harder to breath and keep his oxygen saturation above 70.
From what we’ve been told and what information we’ve read so far, is that it could take anywhere from 1 week to 12 weeks to fully heal from this and that it can be hard to manage.
To correct Chylothorax, he has been placed on a formula called Portagen. The fats found in Portagen have already been broken down, making it next to impossible for the fat to continue seeping thru. It is unknown how soon or how long it will take Tyler to recover from this condition, but should recover nonetheless – eventually. Hopefully the vessel that is injured will repair itself quickly and we can resume his regular formula again.
I am unsure of the exact amount of liquid surrounding his lungs right now that’s just waiting to come out, but we’ll know if the Chylothorax is getting worse if his weight jumps significantly overnight and/or if his respirations continue to rise.
Please, please I beg of you all, to keep my baby boy in your prayers to make this condition go away. Personally, I’d much rather be back to just praying for pee. It’s been a very stressful day… God only knew this day was coming.
Thursday, May 1, 2008
Pray For PEE!
The only thing holding Tyler back from moving to the floor, is his lack of urination. He's still very swollen and puffy, and needs to pass the excess fluids, but the Doctors aren't too concerned yet - they just think it's going to take a little more time and are trying to think of ways to help pull the liquid from his body. Right now, Tyler is only urinating about once every 12 hours. They're hopeful that will increase as the day moves on.
His blood pressure is still looking really good and they've now started feeding him!
Trish
His blood pressure is still looking really good and they've now started feeding him!
Trish
Wednesday, April 30, 2008
A new day . . .
The sun has arisen on yet another day, and he's still hanging in there.
Blood pressure seems to be almost in control at this point, so during rounds this morning the doctors have requested the nursing staff to start weaning him from his drips.
In the 13+ hours since being extubated, Tyler seems to be experiencing a little more pain that is causing him to take shorter (and not as deep) breaths... like he's afraid to. However, his blood gases continue to come back just fine. As a result of the increased pain alongside his massive headaches (due to adjusting to the new bloodflow), they have ordered a new med (toradol) to help take the edge off and allow him to relax. He is also experiencing major itching issues as he comes down from the Nitro and Morphine... also something to be totally expected.
He is very swollen today because his puffiness increased over the night. His day shift nurse, Michelle, is taking measures to correct it with hopes that he'll start to pee some of it off. Basically what's happening is he's taking in more than he's letting off. Also, his throat is swollen and dry from the ventilator, which isn't allowing a lot of what he's trying to cough up to come out, causing him to have a little bit of stridor at this point. However, his lungs are nice and clear at this point, so the doctors told us not to be concerned yet.
We were told by his Surgeon, Dr. Lofland, and CV Surgery nurse, S. Reynolds, that today and tomorrow will be two of his worst days during the recovery process. We were also told that we shouldn't expect to head to the floor today (but maybe by tomorrow evening)... It all depends on the length of time it takes for the nursing staff to adequately wean him from the drips, become stable on his own accord, and begin his feedings again.
Andrew and I have talked about the possibility of having one of our favorite OT's, that worked with Tyler during his stay here in Aug/Sept '07, come up for a visit to discuss the possibility of working again with a bottle... since there isn't an issue anymore with paralyzed vocal cords or aspirating. I don't know, but we'll see. It would sure be nice to have him take liquids by mouth (like formula in a bottle) to help heal his throat after being intubated.
I will post again later in the day on how he progresses. Please continue to keep him in your prayers. I am a little down today, just because we're facing the reality of post-surgery now. This really is the worst part. But as always, a safe recovery takes time.
Blood pressure seems to be almost in control at this point, so during rounds this morning the doctors have requested the nursing staff to start weaning him from his drips.
In the 13+ hours since being extubated, Tyler seems to be experiencing a little more pain that is causing him to take shorter (and not as deep) breaths... like he's afraid to. However, his blood gases continue to come back just fine. As a result of the increased pain alongside his massive headaches (due to adjusting to the new bloodflow), they have ordered a new med (toradol) to help take the edge off and allow him to relax. He is also experiencing major itching issues as he comes down from the Nitro and Morphine... also something to be totally expected.
He is very swollen today because his puffiness increased over the night. His day shift nurse, Michelle, is taking measures to correct it with hopes that he'll start to pee some of it off. Basically what's happening is he's taking in more than he's letting off. Also, his throat is swollen and dry from the ventilator, which isn't allowing a lot of what he's trying to cough up to come out, causing him to have a little bit of stridor at this point. However, his lungs are nice and clear at this point, so the doctors told us not to be concerned yet.
We were told by his Surgeon, Dr. Lofland, and CV Surgery nurse, S. Reynolds, that today and tomorrow will be two of his worst days during the recovery process. We were also told that we shouldn't expect to head to the floor today (but maybe by tomorrow evening)... It all depends on the length of time it takes for the nursing staff to adequately wean him from the drips, become stable on his own accord, and begin his feedings again.
Andrew and I have talked about the possibility of having one of our favorite OT's, that worked with Tyler during his stay here in Aug/Sept '07, come up for a visit to discuss the possibility of working again with a bottle... since there isn't an issue anymore with paralyzed vocal cords or aspirating. I don't know, but we'll see. It would sure be nice to have him take liquids by mouth (like formula in a bottle) to help heal his throat after being intubated.
I will post again later in the day on how he progresses. Please continue to keep him in your prayers. I am a little down today, just because we're facing the reality of post-surgery now. This really is the worst part. But as always, a safe recovery takes time.
Tuesday, April 29, 2008
Update number four . . .
Tyler's current condition:
he has been extubated;
breathing at a good pace (not rapid);
not retracting;
he's becoming more alert;
due to high blood pressure, keep him on a low flow of oxygen with the nasal canula;
did spike a fever caused by a systemic response, but has gone down now.
Kathleen and Andrew are going to get some rest for a while and then go back to the hospital to be with Tyler, so watch for more updates!
God Bless Baby Tyler and his Family!
Trish
he has been extubated;
breathing at a good pace (not rapid);
not retracting;
he's becoming more alert;
due to high blood pressure, keep him on a low flow of oxygen with the nasal canula;
did spike a fever caused by a systemic response, but has gone down now.
Kathleen and Andrew are going to get some rest for a while and then go back to the hospital to be with Tyler, so watch for more updates!
God Bless Baby Tyler and his Family!
Trish
Update number three . . .
Hi everybody! It's Kathleen!
My little fighter is something else! What a strong baby. Seriously, I can't stress that enough!
So far so good with the way things are looking for him. He is fighting very high blood pressure (supposedly even since the end of surgery) But the doctors and nurses are attempting to get it under control, it just might take a while for it to level off. Other than that, he's doing good.
They're slowing weaning from the ventilator with doctors hoping he'll be extubated this evening or no later than tomorrow morning.
If things continue to progress in the positive direction, there is talk of MAYBE being home by this weekend or early next week. WHOA! I can't begin to fathom that.
I will be taking pictures this time... (something I didn't do after his Norwood) So weary eyes be forewarned. I want to post them because this blog is not only for all of you to read, but it also acts as a journal for Andrew and I as we make this journey with Tyler.
Thank you for your thoughts and prayers today! Love you all.
My little fighter is something else! What a strong baby. Seriously, I can't stress that enough!
So far so good with the way things are looking for him. He is fighting very high blood pressure (supposedly even since the end of surgery) But the doctors and nurses are attempting to get it under control, it just might take a while for it to level off. Other than that, he's doing good.
They're slowing weaning from the ventilator with doctors hoping he'll be extubated this evening or no later than tomorrow morning.
If things continue to progress in the positive direction, there is talk of MAYBE being home by this weekend or early next week. WHOA! I can't begin to fathom that.
I will be taking pictures this time... (something I didn't do after his Norwood) So weary eyes be forewarned. I want to post them because this blog is not only for all of you to read, but it also acts as a journal for Andrew and I as we make this journey with Tyler.
Thank you for your thoughts and prayers today! Love you all.
Update number two . . .
Tyler's surgery is FINISHED! The surgeon, Dr. Lofland, said that things went very, very well - like clockwork! He also said the surgery was performed perfectly, and with nothing else needing to be repaired or worked on. Tyler should be set up in the PICU for recovery in 30-45 minutes!
The updates will continue. Keep praying!
Trish
The updates will continue. Keep praying!
Trish
Update Number 1 . . .
An hour ago, the family was informed that Tyler went to sleep absolutely fine and did quite well with that first step. The Surgeon had no problem getting in and said scar tissue on both the sternum and heart is very minimal, and he was quite happy with that. The actual Glenn procedure is now being performed and the next update should be in about two hours, so stay tuned!
Trish
Trish
Monday, April 28, 2008
I think this is appropriate! :)
A Patient's Prayer
Good and loving God, during my stay in
The Children's Mercy Hospital,
I place myself in Your hands.
The experience of Your presence calms me.
All healing comes from you. Please heal me!
Give me wholeness through the skills
The experience of Your presence calms me.
All healing comes from you. Please heal me!
Give me wholeness through the skills
You have given my doctors, nurses, technicians
and everyone dedicated to me and to my care.
The medicine and technology
that aid in my healing are Your gifts to me.
I know all good things come from You.
Thank You for the many blessings
You have given me so far
and for the persons whom I love. Amen
Countdown: 1 day (t-minus 15 hours)
Pre-op appointment went as good as good can get! Meetings with nurses, our surgeon, anethesiologists, vitals, health screening, ekg, blood draws, chest xray.... Whew! It was a busy day. But we have clearance for surgery tomorrow morning! He's first case.
We are to arrive at 7am, surgery should start about 8/8:30am. There will be a Cardiovascular Surgery Nurse who will come out and give us an hourly update. After each hourly update, I hope to be able to relay the information in a timely fashion so a post can be made regarding his progress.
Just wanted to thank you all again for hanging tight with us as Tyler undergoes another open-heart surgery.
We are to arrive at 7am, surgery should start about 8/8:30am. There will be a Cardiovascular Surgery Nurse who will come out and give us an hourly update. After each hourly update, I hope to be able to relay the information in a timely fashion so a post can be made regarding his progress.
Just wanted to thank you all again for hanging tight with us as Tyler undergoes another open-heart surgery.
