Zoe's fever is gone and now we're giving her 1/2 teaspoons of heart stuff, antibiotics, antireflux stuff, some asprin...and her Captopril patch. She's back to being a pretty docile, opinionated, smartypants. Who has no sleep schedule to speak of.
Thank you for praying and thinking of her. I"ll get some movies up of her - is she waving bye bye to mom? You can decide this weekend.
Friday, February 13, 2009
Wednesday, February 11, 2009
Fever
After a night of fever hovering over 103 degrees...Jen took Zoe into Dr. Chatton's office. They tested and tested and are pretty sure she has a urinary tract infection. It's been a long haul, a long night. I'm hoping everyone has it right.
Tuesday, February 10, 2009
The Government Says: DNR
Reprinting this comment for you in case you're not a comment reader:
This blog entry is begging for my response.
My daughter Annie died at the age of 80 days within 24 hours arrival at a prestigious hospital in Canada. A DNR was written without our knowledge or consent. Lethal, unauthorized quantities of narcotics were removed from the cabinet under Annie's name. The final computerized medication report is inexplicably missing.
Annie had trisomy 13. Unlike many poor children born with this condition, Annie did not have the common brain or heart defects and she could see and hear. She died of a genetic label.
To this day, we do not know what was wrong or why she could not be helped. The Coroner determined the care was "not appropriate" and told us to go complain at the medical board or start a law suit.
Well....in Canada, the life of a child with disabilities barely approaches the cost of a lawyer just getting warmed up.
The medical board would not take action because it is not the doctor's fault: it is a health policy. Our hospital has a "no treat, terminally sedate" policy for trisomy 13/18 kids who land in the ICU or NICU.
Here is a video of a father from Canada describing how the director of the NICU tried to kill his daughter with Trisomy 13. (She is now 7, walking independently, and quite happy)
Annie's story is at www.anniefarlow.com
Things are worse in Canada....but it is changing in the US. We had NO CHOICE for life for Annie....even if we were willing to pay for all of the medical treatment ourselves. It was not an option because the whole time the doctors were pretending that they were "doing everything" and we believed that.
Kids with Trisomy 13 and 18 are at the forefront of the eugenics movement. It all starts with government policies based on quality of life.
Barb
This blog entry is begging for my response.
My daughter Annie died at the age of 80 days within 24 hours arrival at a prestigious hospital in Canada. A DNR was written without our knowledge or consent. Lethal, unauthorized quantities of narcotics were removed from the cabinet under Annie's name. The final computerized medication report is inexplicably missing.
Annie had trisomy 13. Unlike many poor children born with this condition, Annie did not have the common brain or heart defects and she could see and hear. She died of a genetic label.
To this day, we do not know what was wrong or why she could not be helped. The Coroner determined the care was "not appropriate" and told us to go complain at the medical board or start a law suit.
Well....in Canada, the life of a child with disabilities barely approaches the cost of a lawyer just getting warmed up.
The medical board would not take action because it is not the doctor's fault: it is a health policy. Our hospital has a "no treat, terminally sedate" policy for trisomy 13/18 kids who land in the ICU or NICU.
Here is a video of a father from Canada describing how the director of the NICU tried to kill his daughter with Trisomy 13. (She is now 7, walking independently, and quite happy)
Annie's story is at www.anniefarlow.com
Things are worse in Canada....but it is changing in the US. We had NO CHOICE for life for Annie....even if we were willing to pay for all of the medical treatment ourselves. It was not an option because the whole time the doctors were pretending that they were "doing everything" and we believed that.
Kids with Trisomy 13 and 18 are at the forefront of the eugenics movement. It all starts with government policies based on quality of life.
Barb
Wrestling
Zoe's run into a situation with her medicine that has made her uncomfortable and pretty sleepless for much of the last 24 hours. Please pray for her. She needs to sleep.
Is Caring For Zoe Appropriate And Cost Effective?
Last time I mentioned the threat that Universal Healthcare poses to kids like Zoe, one commenter mentioned "I hope that the patient's rights and wishes will be number one in the medical staff's decisions. I have faith in Pres. Obama. He is a father and has overcome a lot in his life. I believe he truly cares about ALL Americans regardless of race, religion, or financial status."
Another said, "Do you think those 50 million deserve health care less than Zoe?
Do you think God wants them to have less then Zoe? How lucky Zoe is to be born in to a family where you have resources even if they are not perfect, but really do you think some people don't deserve health care? It sounds like You think the draconian decision should be against the 50 million who are not you."
Fast forward to today, and the current "stimulus" bill that will soon be adopted into law. One of the stimuli that will soon be law, according to this op/ed in Bloomberg, provides for "medical treatments will be tracked electronically by a federal system. Having electronic medical records at your fingertips, easily transferred to a hospital, is beneficial. It will help avoid duplicate tests and errors."
My response: good to great. I observed physicans and nurses at the same hospital who weren't aware of what had happened in previous shifts or days or weeks. For sure, Zoe's pediatrician and the hospital sharing information would have been and would still be a great step forward.
But.
But then the bill goes on to establish a bureau to oversee those records. "One new bureaucracy, the National Coordinator of Health Information Technology, will monitor treatments to make sure your doctor is doing what the federal government deems appropriate and cost effective. The goal is to reduce costs and “guide” your doctor’s decisions."
Dr. Frommelt told us that Zoe's surgery - performed with care in a private health care system - was the discussion of surgeons and ethicists. What now? What if the decision is put in the same hands of the government that allows for and funds abortion, including late-term abortions?
Appropriate and cost effective would be to let the little girl with the death sentence die. I'll break it to her when she wakes up from her nap. On, stimulus! On!
Another said, "Do you think those 50 million deserve health care less than Zoe?
Do you think God wants them to have less then Zoe? How lucky Zoe is to be born in to a family where you have resources even if they are not perfect, but really do you think some people don't deserve health care? It sounds like You think the draconian decision should be against the 50 million who are not you."
Fast forward to today, and the current "stimulus" bill that will soon be adopted into law. One of the stimuli that will soon be law, according to this op/ed in Bloomberg, provides for "medical treatments will be tracked electronically by a federal system. Having electronic medical records at your fingertips, easily transferred to a hospital, is beneficial. It will help avoid duplicate tests and errors."
My response: good to great. I observed physicans and nurses at the same hospital who weren't aware of what had happened in previous shifts or days or weeks. For sure, Zoe's pediatrician and the hospital sharing information would have been and would still be a great step forward.
But.
But then the bill goes on to establish a bureau to oversee those records. "One new bureaucracy, the National Coordinator of Health Information Technology, will monitor treatments to make sure your doctor is doing what the federal government deems appropriate and cost effective. The goal is to reduce costs and “guide” your doctor’s decisions."
Dr. Frommelt told us that Zoe's surgery - performed with care in a private health care system - was the discussion of surgeons and ethicists. What now? What if the decision is put in the same hands of the government that allows for and funds abortion, including late-term abortions?
Appropriate and cost effective would be to let the little girl with the death sentence die. I'll break it to her when she wakes up from her nap. On, stimulus! On!
Monday, February 09, 2009
Eagle's Wings
My buddy spoke to me Friday of financial travails that make me cringe and just break him to pieces. He's praying, trying to stay plugged in, but sometimes it feels like your stuff is so distant and unique. And so far away from help.
The sermon this week at church was a good reminder that we might not get money, or time. But we will receive hope. There is no God-forsaken place. There is no hopeless situation.
The devotion I read this morning says, "He saved and sanctified you to exhaust you."
The sermon this week at church was a good reminder that we might not get money, or time. But we will receive hope. There is no God-forsaken place. There is no hopeless situation.
The devotion I read this morning says, "He saved and sanctified you to exhaust you."
Sunday, February 08, 2009
Friday, February 06, 2009
Eternal Thanks
One thing I've steered clear of on this blog is all the support we've received from so many many different people.
I'll freely admit I've struggled with the focus and message of this blog and most specifically those who have given Zoe financial support. Support of all kinds. I received an envelope from some kids in Houston who went door to door raising money for Zoe. When Brooke handed me that envelope, I was racked with emotion.
Frankly, Zoe does require extra. Extra prayers. Extra attention. Extra time. Extra holding. Extra patience. Extra dollars. But since we know God gave us Zoe, so we also know that God will provide the extra.
But we never imagined it'd come in so many forms. In an envelope from some loving kids who we've never met. From some caring friends who gave beyond their means to help. From kids like Naomi, who gave me a bag of quarters, to Your Favorite Baseball Player Chris Sampson and his family.
To Doug Lusk at Camden Development Company. Ever heard of him or them? Honestly, I hadn't until I heard that his company, at last year's end, decided to help Zoe.
Your Favorite Baseball Player and his wife, the lovely (and radiantly pregnant) Heather, set up an account with Helping Hands Ministries (www.hhmin.org). These guys accept tax-deductible donations and then give them to authorized recipients. Like Zoe.
The folks at Camden are followers of the blog and they got together and gave a nice - an amazing - a humbling - gift to Helping Hands for Zoe.
Jen and I are so humbled. By those little kids in Houston, by people like the Jarvis's in Chicago. St. Mipps. There's so so many of you out there...
When this all started, I honestly thought that I'd wait until Zoe had lived her life, and then I'd write each and every one of you a thank you, celebrating her life. Zoe and God had different ideas.
And now I am stuck. I'm so grateful to you all and I'm feeling pretty crappy because you all haven't been properly loved back. What can we say? What can I do?
We're going to do a better job of letting you guys know just how grateful we are for you, for your prayers, love and support. You are literally the hand of God touching our lives.
I'll freely admit I've struggled with the focus and message of this blog and most specifically those who have given Zoe financial support. Support of all kinds. I received an envelope from some kids in Houston who went door to door raising money for Zoe. When Brooke handed me that envelope, I was racked with emotion.
Frankly, Zoe does require extra. Extra prayers. Extra attention. Extra time. Extra holding. Extra patience. Extra dollars. But since we know God gave us Zoe, so we also know that God will provide the extra.
But we never imagined it'd come in so many forms. In an envelope from some loving kids who we've never met. From some caring friends who gave beyond their means to help. From kids like Naomi, who gave me a bag of quarters, to Your Favorite Baseball Player Chris Sampson and his family.
To Doug Lusk at Camden Development Company. Ever heard of him or them? Honestly, I hadn't until I heard that his company, at last year's end, decided to help Zoe.
Your Favorite Baseball Player and his wife, the lovely (and radiantly pregnant) Heather, set up an account with Helping Hands Ministries (www.hhmin.org). These guys accept tax-deductible donations and then give them to authorized recipients. Like Zoe.
The folks at Camden are followers of the blog and they got together and gave a nice - an amazing - a humbling - gift to Helping Hands for Zoe.
Jen and I are so humbled. By those little kids in Houston, by people like the Jarvis's in Chicago. St. Mipps. There's so so many of you out there...
When this all started, I honestly thought that I'd wait until Zoe had lived her life, and then I'd write each and every one of you a thank you, celebrating her life. Zoe and God had different ideas.
And now I am stuck. I'm so grateful to you all and I'm feeling pretty crappy because you all haven't been properly loved back. What can we say? What can I do?
We're going to do a better job of letting you guys know just how grateful we are for you, for your prayers, love and support. You are literally the hand of God touching our lives.
Tuesday, February 03, 2009
Some Good Comments And My Responses
Hey everyone...Dan wrote an interesting take on Narnia...and Anonymous took a bold swipe at my comments on healthcare. Do take a look...I responded, and would love to hear your responses.
Monday, February 02, 2009
Rule 24: Keep The Filipinos In The Sun
Bat's in Sacramento visiting Andreas, and baptizing Ella (yesterday)(welcome to the Kingdom, Ella).
He spent some time basking in the sun...soaking up the rays, and awoke "energized." He jumped into writing next week's sermon and cartoon.
The moral, according to Andreas: Keep The Filipinos In The Sun. It's somewhere in the medical journals, I'm sure.
He spent some time basking in the sun...soaking up the rays, and awoke "energized." He jumped into writing next week's sermon and cartoon.
The moral, according to Andreas: Keep The Filipinos In The Sun. It's somewhere in the medical journals, I'm sure.
Why Won't Humana Healthcare Approve An RSV Vaccination?
Soo...Bart Millard's home with Sophie. They both were tired.
If you follow Bart's Twitter or blog, you'll find out RSV can be pretty dangerous - and pretty scary.
Humana Healthcare approved of an RSV shot for Zoe while she was in the hospital. Why are they dragging their feet and not approving one now?
Is it time to get paranoid and defensive?
Friday, January 30, 2009
New Hope For The DufflePuds
I was very sad when I heard that Disney had dropped its role in producing the Chronicles of Narnia films. I had been waiting for "The Voyage of the Dawn Treader," the one book out of the series filled with wild, fantastic images made for the big screen.
That's not to say that I was overly enthused about the movies that Disney had produced. I think they went about producing and releasing them incorrectly, as does this writer/producer.
I think that there is an audience of Lewis fans who are outspoken Christians who would plop their money down to see a movie done artfully with state-of-the-art casting and production values, like The Passion of the Christ.
I was just happy to see someone - anyone - interpret the films and TRY to stay close to the unique storytelling, the fantastic world, and the truly memorable allegories present throughout the series.
Now the someone is Twentieth Century Fox. I hope they take their time, do it right..even it means reshuffling the deck of who is supplying the creative vision.
That's not to say that I was overly enthused about the movies that Disney had produced. I think they went about producing and releasing them incorrectly, as does this writer/producer.
I think that there is an audience of Lewis fans who are outspoken Christians who would plop their money down to see a movie done artfully with state-of-the-art casting and production values, like The Passion of the Christ.
I was just happy to see someone - anyone - interpret the films and TRY to stay close to the unique storytelling, the fantastic world, and the truly memorable allegories present throughout the series.
Now the someone is Twentieth Century Fox. I hope they take their time, do it right..even it means reshuffling the deck of who is supplying the creative vision.
Thursday, January 29, 2009
Pray For Sophie
Sophie Millard is Bart Millard, the lead singer for MercyMe's, youngest daughter. I follow Bart via Twitter, and Sophie just took a turn for the worse with her breathing. She's been hospitalized with RSV.
Bart tweeted that he's not sure if he should go to his next show. I'm sure he's a wreck. Please pray for him and his precious daughter. Pray that she fights like other little girls we know.
Bart tweeted that he's not sure if he should go to his next show. I'm sure he's a wreck. Please pray for him and his precious daughter. Pray that she fights like other little girls we know.
Wednesday, January 28, 2009
A Talk With...Sam Provenzano
For those of you who have been following this blog for a while, you'll recognize Sam P's name. I met Sam really...really briefly for as close as I feel to her. She has been a constant friend and support to Jen and me, and a true Zoe fan.
The fact that I know Sam and call her friend is a testament to what God can do if you let Him.
Here's a quick excerpt of Sam's answer when I asked about Zoe's impact on her life:
"Seriously... the impact.. it has been overwhelming. Let me start off by saying.. I never have prayed or believed in something before.. well.. obviously she is fact that there is something out there. She has moved so many people.. reading the comments you get.. just gives you faith that there is hope out there"
Read it all here.
The fact that I know Sam and call her friend is a testament to what God can do if you let Him.
Here's a quick excerpt of Sam's answer when I asked about Zoe's impact on her life:
"Seriously... the impact.. it has been overwhelming. Let me start off by saying.. I never have prayed or believed in something before.. well.. obviously she is fact that there is something out there. She has moved so many people.. reading the comments you get.. just gives you faith that there is hope out there"
Read it all here.
Tuesday, January 27, 2009
To Sleep. Perchance.
Zoe's still living her interrupted nights, although sometimes she'll sleep three hours in a row. Her most recent trip to Dr. Frommelt resulted in a reduction in her medicated patch. Dr. Frommelt thinks she'll soon be off the patch. She even set up an appointment for two months!
Oddly enough...to show you how times change...the appointment was on Zoe's 10 month birthday. I didn't realize it. In a way, that's good.
Up here in Wisconsin, we've had 65 consecutive days of snow on the ground. It was -1 on the way in to work. Bleck.
So, we're slowly putting away stuff from boxes, watching the days slowly get longer. Getting used to a little girl who hasn't given up. Slowly, our life ebbs on.
Oddly enough...to show you how times change...the appointment was on Zoe's 10 month birthday. I didn't realize it. In a way, that's good.
Up here in Wisconsin, we've had 65 consecutive days of snow on the ground. It was -1 on the way in to work. Bleck.
So, we're slowly putting away stuff from boxes, watching the days slowly get longer. Getting used to a little girl who hasn't given up. Slowly, our life ebbs on.
Thursday, January 22, 2009
True Truths
So. Zoe's sleeping here, back to eating. Fever gone since Sunday. Doc says she's up one pound in one week! They're cutting back on her Clonodine patch...really liking how things are going.
I'm fully hoping - hoping - planning - to take her to Florida with me for Easter. Because we definitely need to drive away from this place. Please don't ask zackly how I'm going to GET to Florida, but details, details.
So...isn't it awesome to not have much to report? Ok, yes. Jen and I are exhausted, still trying to unpack while we work insane schedules. It's a whole other blog.
And...distracted. Look at this from today's My Utmost For His Highest:
The greatest difficulty spiritually is to concentrate on God, and His blessings are what make it so difficult. Troubles almost always make us look to God, but His blessings tend to divert our attention elsewhere.
Or to quote Kirk Franklin: "Some of y'all wouldn't pray unless something was happening to you."
Right Sam? Wait 'til you hear Sam P's story! Coming soon...
I'm fully hoping - hoping - planning - to take her to Florida with me for Easter. Because we definitely need to drive away from this place. Please don't ask zackly how I'm going to GET to Florida, but details, details.
So...isn't it awesome to not have much to report? Ok, yes. Jen and I are exhausted, still trying to unpack while we work insane schedules. It's a whole other blog.
And...distracted. Look at this from today's My Utmost For His Highest:
The greatest difficulty spiritually is to concentrate on God, and His blessings are what make it so difficult. Troubles almost always make us look to God, but His blessings tend to divert our attention elsewhere.
Or to quote Kirk Franklin: "Some of y'all wouldn't pray unless something was happening to you."
Right Sam? Wait 'til you hear Sam P's story! Coming soon...
Teia Interview
I'm breaking a blogger rule and putting the whole interview up here...truly, because the webserver I'm using won't let me upload this anywhere else. Here's some of Teia's thoughts...
1. you just got back from a trip. Where did you go, who with? What did you do?
We went to Camp Biloxi in Mississippi and I went with my winterim class called "The Mission" and a few college students. Oh and brennick went too. haha
We helped some homeless people out by giving them food and blankets and then we helped work on the outside of some houses. We painted, created a trench for a drain, put gutters on the house...lots of stuff.
2. are there still people affected by the hurricane from a bunch of years ago?
Yeah there are tons of people still affected by the hurricane and are trying 3.5 years later to rebuild their lives. they all have so much hope to rebuild and get moving with their lives and to be HOME again.
3. what was the weather like?
the weather was really nice. the first day or two it was probably 60-65ish and sunny. towards the end of the week it was 20 in the morning when we would walk over to the cafeteria tent and we were freezing in our t-shirts. we wore layers the whole week but it wasn't quite "coat" weather (well for us at least).
4. did you get some good pictures?
we got some really good pics. well ok, i got some really fun ones...mine were a little more "artsy", some funny ones. and then my friend kirin ended up taking a ton of funny pics of my friend beth, me and kirin.
5. what do you look for when you want to take a picture
i don't know. i was just walking around and looking at the details of the houses'. there was this one house we visited right across from the beach that was still standing but barely. and i just walked through that house and found some really neat things like beads hanging from a bar, holding a door shut.
6. you turned 18. what's that like?
it's a number. well basically my whole birthday i was in MS and it was sunny and in the 50's...for the first time in my life, which was awesome.and the whole day kirin and beth kept saying and singing happy birthday to me in every way possible. they put Happy BDAY to every song that was playing and each time kirin looked at me she said happy birthday.
7. you're an adult now. Do you feel like an adult
um no.
8. did you have any goals you wanted to meet by now? Do you have goals for the future?
i don't think that i had any set goals but i'm glad that i've accomplished what i've accomplished. i've had some of my pictures on an album (which was awesome), i had some poems published in a poetry book and i've been on a mission trip. i dont think any of those were intentional goals like, "i have to do blahblahblah...by my 18th bday." but i'm glad that i did.
9. if you could live anywhere, where would it be?
i have no idea. i really liked the whole no snow thing for the past week but i would hate those little critters like cockroaches and lizard things and alligators. GROSS. but right now i like the burg.
1. you just got back from a trip. Where did you go, who with? What did you do?
We went to Camp Biloxi in Mississippi and I went with my winterim class called "The Mission" and a few college students. Oh and brennick went too. haha
We helped some homeless people out by giving them food and blankets and then we helped work on the outside of some houses. We painted, created a trench for a drain, put gutters on the house...lots of stuff.
2. are there still people affected by the hurricane from a bunch of years ago?
Yeah there are tons of people still affected by the hurricane and are trying 3.5 years later to rebuild their lives. they all have so much hope to rebuild and get moving with their lives and to be HOME again.
3. what was the weather like?
the weather was really nice. the first day or two it was probably 60-65ish and sunny. towards the end of the week it was 20 in the morning when we would walk over to the cafeteria tent and we were freezing in our t-shirts. we wore layers the whole week but it wasn't quite "coat" weather (well for us at least).
4. did you get some good pictures?
we got some really good pics. well ok, i got some really fun ones...mine were a little more "artsy", some funny ones. and then my friend kirin ended up taking a ton of funny pics of my friend beth, me and kirin.
5. what do you look for when you want to take a picture
i don't know. i was just walking around and looking at the details of the houses'. there was this one house we visited right across from the beach that was still standing but barely. and i just walked through that house and found some really neat things like beads hanging from a bar, holding a door shut.
6. you turned 18. what's that like?
it's a number. well basically my whole birthday i was in MS and it was sunny and in the 50's...for the first time in my life, which was awesome.and the whole day kirin and beth kept saying and singing happy birthday to me in every way possible. they put Happy BDAY to every song that was playing and each time kirin looked at me she said happy birthday.
7. you're an adult now. Do you feel like an adult
um no.
8. did you have any goals you wanted to meet by now? Do you have goals for the future?
i don't think that i had any set goals but i'm glad that i've accomplished what i've accomplished. i've had some of my pictures on an album (which was awesome), i had some poems published in a poetry book and i've been on a mission trip. i dont think any of those were intentional goals like, "i have to do blahblahblah...by my 18th bday." but i'm glad that i did.
9. if you could live anywhere, where would it be?
i have no idea. i really liked the whole no snow thing for the past week but i would hate those little critters like cockroaches and lizard things and alligators. GROSS. but right now i like the burg.
Wednesday, January 21, 2009
At The Doctor
For a regular checkup. I tried to move it to tomorrow, but that day wasn't open. In fact, the next open day was March 19! Makes you wonder what will happen when the 50 million uninsured are insured. How easy will it be to get an appointment? How easy will it be to reschedule?
And...will state-run healthcare allow for Zoe at all? We're blessed to find a bunch of doctors who see value in preserving Zoe's life, who don't see Trisomy 18 as the end. But, others have simply said or shown that her "death sentence" means she should receive different, less, or no treatment.
Think that will get better or worse with state-run healthcare? In other attempts to bring state-run care through time and history, the state had to make Draconian decisions about treating the elderly or dying to care for those who they deemed would live. Come to think of it, I'm glad Zoe and my Dad were able to experience a different healthcare for this part of their lives.
And...will state-run healthcare allow for Zoe at all? We're blessed to find a bunch of doctors who see value in preserving Zoe's life, who don't see Trisomy 18 as the end. But, others have simply said or shown that her "death sentence" means she should receive different, less, or no treatment.
Think that will get better or worse with state-run healthcare? In other attempts to bring state-run care through time and history, the state had to make Draconian decisions about treating the elderly or dying to care for those who they deemed would live. Come to think of it, I'm glad Zoe and my Dad were able to experience a different healthcare for this part of their lives.
Tuesday, January 20, 2009
Ironman's Ink
Ironman - Michael Hennessey, current world record holder for most Ironman competitions completed in a year - did an interview where he mentioned Zoe! Thanks, Ironman!
Continue to pray for him and his quest to make people aware of Trisomy 13 and 18.
Continue to pray for him and his quest to make people aware of Trisomy 13 and 18.
Fever Breaks
Zoe's fever broke on Sunday, and after a few days of not eating much at all - and one short period where she couldn't keep anything down - she's back to eating and behaving a lot more like the well Zoe we know.
Just talked to my Pa and he's on the road back. The eating issues he suffered were definitely linked to the gall bladder. It demonstrates how sometimes doctors can get wrapped up in their area of focus and apply symptoms to that area.
It took insight of Doctor Rod - a long-time family friend - to consider the gall bladder.
So we praise God for all the people who have combined their expertise to keep Bats in health.
Just talked to my Pa and he's on the road back. The eating issues he suffered were definitely linked to the gall bladder. It demonstrates how sometimes doctors can get wrapped up in their area of focus and apply symptoms to that area.
It took insight of Doctor Rod - a long-time family friend - to consider the gall bladder.
So we praise God for all the people who have combined their expertise to keep Bats in health.
Saturday, January 17, 2009
Teia At 18
Teia turned 18 today. Fittingly, she was down south on a mission trip. Her heart for service is her birthday present to all of us.
one handed entry
trying to not disturb sleeping z. shw\e won't stay asleep. fever of over 101 earlier. she antibiotics, but no relief yet. please keep her in your prayers.
Friday, January 16, 2009
Zoe Update and My Apology
Zoe is going to the doctor today. The last few days have been hard for her. She's struggling with something - uncomfortable and eating less. Long nights are even longer. We're hoping and praying this is something treatable and that she can get back to eating.
I've been swallowed up by two things: an overwhelming sense of fatigue in updating, especially helped along by people making me pay for my honesty here. My friend Ted says that I don't have to update or owe you all anything, and frankly, through the last month I haven't been honest about some of our family struggles and pressures we've endured.
But I also like sharing with you. I need your prayers. I crave your support and thoughts through this incredibly trying time.
The other thing is work! work, and lots of it. And given our times, I'm grateful for all the work, glad I've been blessed with it. I've got a huge project due this weekend that has been pretty fun and wildly demanding.
So, thanks for being patient with me. Pray for little Zoe. I hope that what's ailing her can be reversed. I hope that we get to see more of her and grow with her.
I've been swallowed up by two things: an overwhelming sense of fatigue in updating, especially helped along by people making me pay for my honesty here. My friend Ted says that I don't have to update or owe you all anything, and frankly, through the last month I haven't been honest about some of our family struggles and pressures we've endured.
But I also like sharing with you. I need your prayers. I crave your support and thoughts through this incredibly trying time.
The other thing is work! work, and lots of it. And given our times, I'm grateful for all the work, glad I've been blessed with it. I've got a huge project due this weekend that has been pretty fun and wildly demanding.
So, thanks for being patient with me. Pray for little Zoe. I hope that what's ailing her can be reversed. I hope that we get to see more of her and grow with her.
Saturday, January 10, 2009
AE In First After Time Trials
AE had his gall bladder removed yesterday at about 8 pm. It had stones and sludge and gross gall things in it.
Today he saw some other patients walking the halls outside his room.
And he thought they were walking pretty slow.
Slower than he would walk. So he got up and sauntered out into the hall. And he started to bend over towards the floor.
Kirin hustled out to see if he needed help. It had been just over 12 hours since he had his operation.
Dad told her he was just getting down into the starting position. Thankfully he didn't get into a full four point stance, but he did bend over there and waited for Kirin to start him.
And then he took off. He walked 17 laps of his floor, lapping the slowest. He had Kirin start timing his laps so he could compete with himself.
And so as Zoe snores in the bed next to me, her grandfather is snoring somewhere. They will not go like they're supposed to. You cannot forget to fight. And if fight is in you, it doesn't leave. Ever.
Today he saw some other patients walking the halls outside his room.
And he thought they were walking pretty slow.
Slower than he would walk. So he got up and sauntered out into the hall. And he started to bend over towards the floor.
Kirin hustled out to see if he needed help. It had been just over 12 hours since he had his operation.
Dad told her he was just getting down into the starting position. Thankfully he didn't get into a full four point stance, but he did bend over there and waited for Kirin to start him.
And then he took off. He walked 17 laps of his floor, lapping the slowest. He had Kirin start timing his laps so he could compete with himself.
And so as Zoe snores in the bed next to me, her grandfather is snoring somewhere. They will not go like they're supposed to. You cannot forget to fight. And if fight is in you, it doesn't leave. Ever.
Thursday, January 08, 2009
AE. Oh, The GALL
Bladder. Tests show the gall bladder has some bad stones in it, some stuff rattling around in it, and maybe it has to come out.
What his ailment isn't is ..it ISN'T his cancer. The trouble eating and digesting and evacuating waste has all been a function of the bad gall bladder.
The hospital has finally allowed AE to have some fluids, but he's still in a bunch of pain.
What his ailment isn't is ..it ISN'T his cancer. The trouble eating and digesting and evacuating waste has all been a function of the bad gall bladder.
The hospital has finally allowed AE to have some fluids, but he's still in a bunch of pain.
Wednesday, January 07, 2009
AE update
Christa - my mom - called to tell me that Bat goes in tomorrow to get his gall bladder checked. Seems like Dr. Rod, long-time family friend and physician, thinks it might be related to what's ailing Dad.
Thank you all for your kind words and prayers. Keep lifting him up.
Thank you all for your kind words and prayers. Keep lifting him up.
Tuesday, January 06, 2009
Time Will Always Tell
Washed By The Water
by needtobreathe
Daddy was a preacher
She was his wife
Just tryin to make the world a little better
You know, shine a light
People started talking
Trying to hear their own voice
Those people tried to accuse my father
Said he made the wrong choice
Though it might be painful
You know that time will always tell
Those people have long since gone
My father never failed
Even when the rain falls
Even when the flood starts rising
Even when the storm comes
I am washed by the water
Even if the Earth crumbles under my feet
Even if the ones I love turn around and crucify me
I won’t never ever let you down
I won’t fall
I won’t fall
I won’t fall as long as you’re around me
by needtobreathe
Daddy was a preacher
She was his wife
Just tryin to make the world a little better
You know, shine a light
People started talking
Trying to hear their own voice
Those people tried to accuse my father
Said he made the wrong choice
Though it might be painful
You know that time will always tell
Those people have long since gone
My father never failed
Even when the rain falls
Even when the flood starts rising
Even when the storm comes
I am washed by the water
Even if the Earth crumbles under my feet
Even if the ones I love turn around and crucify me
I won’t never ever let you down
I won’t fall
I won’t fall
I won’t fall as long as you’re around me
Walk The Walk
Not coincidental after I finished telling you about my most excellent father is to tell you a little about Tim Tebow.
I know that Tim is nowhere in the league of Your Favorite Baseball Player Chris Sampson. But this is a guy who walks the walk. Who got ESPN.com to write this:
"It truly would be a shame to submit to cynicism and not fully appreciate the gift of Tebow -- the way he plays football with an unquenchable passion, and the way he approaches life with even greater ardor. If you think he hits linebackers hard on fourth-and-1, that's nothing compared to the way he tackles his higher calling to spread the word. In this one instance, what looks too good to be true really is true."
Spread the word. That's what the sportswriter wrote. How many prisons have you visited (or have I)? How many of the sick in the hospital have you visited (or have I)? P.S. How many Heismans have you won?
You can change the answer to two of the above questions. Tim, he can answer all three different than you and me.
I know that Tim is nowhere in the league of Your Favorite Baseball Player Chris Sampson. But this is a guy who walks the walk. Who got ESPN.com to write this:
"It truly would be a shame to submit to cynicism and not fully appreciate the gift of Tebow -- the way he plays football with an unquenchable passion, and the way he approaches life with even greater ardor. If you think he hits linebackers hard on fourth-and-1, that's nothing compared to the way he tackles his higher calling to spread the word. In this one instance, what looks too good to be true really is true."
Spread the word. That's what the sportswriter wrote. How many prisons have you visited (or have I)? How many of the sick in the hospital have you visited (or have I)? P.S. How many Heismans have you won?
You can change the answer to two of the above questions. Tim, he can answer all three different than you and me.
AE
Please pray for my dad.
I think every man hopes his son is a better man than he is, and on that wish I've failed miserably. There is no more honorable, God-filled, humble servant than my father.
Now he's hurting and sick and at the doctor. Please pray for him. Please lift him up like you lifted his granddaughter through these months. He needs your prayers.
I think every man hopes his son is a better man than he is, and on that wish I've failed miserably. There is no more honorable, God-filled, humble servant than my father.
Now he's hurting and sick and at the doctor. Please pray for him. Please lift him up like you lifted his granddaughter through these months. He needs your prayers.
Sunday, January 04, 2009
Zoe Update
Zoe has settled in at home. Her most recent visit to the cardiologist revealed some very good numbers and signs that she was becoming more relaxed.
I recently took Zoe in to have her ears checked. She might have some kind of ear infection, so an antibiotic was prescribed. Dr. Chatton again echoed earlier comments on the healthiness of her numbers.
We're finally getting her to sleep more. Unfortunately, the sleeping occurs between 1 pm and 5 pm. then she is up and down, mostly up, for sure at night.
It's a really grinding cycle, especially now that Jen is trying to get back into her work cycle and my work cycle has again sprung to level orange - if you're awake, get to work.
So...right now, Zoe's catching up on sleep and her mom is working and her dad is working and the night looms...
A great worry to have, but now that we're fully past 9 months of this particular challenge, it's a tough one.
I recently took Zoe in to have her ears checked. She might have some kind of ear infection, so an antibiotic was prescribed. Dr. Chatton again echoed earlier comments on the healthiness of her numbers.
We're finally getting her to sleep more. Unfortunately, the sleeping occurs between 1 pm and 5 pm. then she is up and down, mostly up, for sure at night.
It's a really grinding cycle, especially now that Jen is trying to get back into her work cycle and my work cycle has again sprung to level orange - if you're awake, get to work.
So...right now, Zoe's catching up on sleep and her mom is working and her dad is working and the night looms...
A great worry to have, but now that we're fully past 9 months of this particular challenge, it's a tough one.
Saturday, January 03, 2009
2008 Reminiscing - Robbie Seay
Robbie Seay just had his birthday, and as is the custom of this blog, I overlooked it and didn't honor it on time.
God sent Robbie Seay's music into my life to give me hope and remind me that of God's promises. I just listened to Robbie's music today and so many vibrant, stirring memories surged into my mind.
God sent Robbie Seay into my life to remind me that God is going to do what He will do. He will move the hearts of men - any man, all men, whoever He chooses - to do His will. To bring hope and comfort to a family that sometimes felt neither.
I am grateful - forever - for Robbie and what he did for our family.
God sent Robbie Seay's music into my life to give me hope and remind me that of God's promises. I just listened to Robbie's music today and so many vibrant, stirring memories surged into my mind.
God sent Robbie Seay into my life to remind me that God is going to do what He will do. He will move the hearts of men - any man, all men, whoever He chooses - to do His will. To bring hope and comfort to a family that sometimes felt neither.
I am grateful - forever - for Robbie and what he did for our family.
Wednesday, December 31, 2008
We'd Like You To Pray, But...
I watched the Saddleback Presidential Debate, and considering how badly Obama lost, I'm happy to know that Rick Warren was asked to give a prayer at the inauguration.
It's also entertaining to watch media types, out of boredom, dig deep and wide to somehow "get" Rick Warren. Just think if they had applied similar scrutiny to the candidates!
See, Rick, we'd like a prayer, but not a Jesus prayer.
It's also entertaining to watch media types, out of boredom, dig deep and wide to somehow "get" Rick Warren. Just think if they had applied similar scrutiny to the candidates!
See, Rick, we'd like a prayer, but not a Jesus prayer.
2008 Reminiscing - Charter Communications
Charter is a classic case of choosing content and voice for this blog. I even put it to you all - do you want to hear about how bad Charter Communications is? About my over two hours on the telephone with them and the 12 different times they terminated the call? About their inability to explain why they had hung up, connect me to the previous consultant, or even consistently advise me on what they could or couldn't do for me?
Well, this article seems to state most of my thoughts nicely. Except to say I'm shocked there are three companies worse than Charter.
In my world there are businesses that will never get my money again. Charter is a proud member of that group.
Well, this article seems to state most of my thoughts nicely. Except to say I'm shocked there are three companies worse than Charter.
In my world there are businesses that will never get my money again. Charter is a proud member of that group.
Monday, December 29, 2008
Smile
Yet those who wait for the LORD Will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.
Whence The Blog?
How was Christmas?
Well...it's good to see Zoe smiling again. She's slowly falling into some kind of crazy sleep/poop rhythm that involves Jen and I never sleeping.
The Pastor at the church we went to Christmas Eve called the children up for blessing. So Zoe got a Christmas Blessing - over and above all of yours.
Can't keep the boys off the Wii.
I was able to see some longstanding blog contributors and spend time with family, warts and all.
Just when I thought we'd have a few minutes inbetween waves of work, it turns out another wave is nigh. So I'm back to working late into the night while I hold baby or else trying to get it done while Jen holds baby.
So many shouts out I want to shout, to all of you all for loving and supporting us, thinking of us in your prayers, for holding us up. When I get half a thought, I'll say more and be clearer.
Well...it's good to see Zoe smiling again. She's slowly falling into some kind of crazy sleep/poop rhythm that involves Jen and I never sleeping.
The Pastor at the church we went to Christmas Eve called the children up for blessing. So Zoe got a Christmas Blessing - over and above all of yours.
Can't keep the boys off the Wii.
I was able to see some longstanding blog contributors and spend time with family, warts and all.
Just when I thought we'd have a few minutes inbetween waves of work, it turns out another wave is nigh. So I'm back to working late into the night while I hold baby or else trying to get it done while Jen holds baby.
So many shouts out I want to shout, to all of you all for loving and supporting us, thinking of us in your prayers, for holding us up. When I get half a thought, I'll say more and be clearer.
Wednesday, December 24, 2008
A Little Song You Can Sing
Something I sung with Zoe as we danced around the house this morning at 5:
Zoe's here for Christmas..
Zoe's here for Christmas..
Zoe's here for Christmas..
(ad lib to fade)
Zoe's here for Christmas..
Zoe's here for Christmas..
Zoe's here for Christmas..
(ad lib to fade)
Tuesday, December 23, 2008
Nor Does He Sleep
And in despair I bowed my head
“There is no peace on earth,” I said,
“For hate is strong and mocks the song
Of peace on earth, good will to men.”
Then pealed the bells more loud and deep:
“God is not dead, nor doth He sleep;
The wrong shall fail, the right prevail
With peace on earth, good will to men.”
But, They're Ill-Tempered Sea Bass
Many of you are wondering if Zoe's hooked up to a machine or got some kind of dripping device (not unlike the one from Austin Powers). The answer is No, Baby!
Zoe wears a patch of Catapres-TTS that lasts a week. It's a blood pressure medicine that will help her get blood properly to her body.
She's also taking Captopril, a medicine that a lot of heart patients take.
Zoe's still taking Prevacid, something she took before surgery to help with her reflux.
And...she's taking Lasix, stuff that a lot of heart patients take that helps all of the liquids exit the body correctly.
And...prune juice. For stuff that prune juice does.
So, besides getting pretty upset that she has to take all the foul liquid orally, Zoe doesn't really encounter much. No beep-beeping, no dripping.
And, she's pink.
Right now, she's in bed, and just realizing that her parents thought she was going to stay in bed.
Zoe wears a patch of Catapres-TTS that lasts a week. It's a blood pressure medicine that will help her get blood properly to her body.
She's also taking Captopril, a medicine that a lot of heart patients take.
Zoe's still taking Prevacid, something she took before surgery to help with her reflux.
And...she's taking Lasix, stuff that a lot of heart patients take that helps all of the liquids exit the body correctly.
And...prune juice. For stuff that prune juice does.
So, besides getting pretty upset that she has to take all the foul liquid orally, Zoe doesn't really encounter much. No beep-beeping, no dripping.
And, she's pink.
Right now, she's in bed, and just realizing that her parents thought she was going to stay in bed.
Monday, December 22, 2008
Aidan Turns 4
Aidan turned four and had a whole bunch of fun with family. Uncle Josh, teeny weenies, a Madagascar cake. I think you'll agree.
Some Zoe and Jen Pictures
Zoe and Jen were holed up in this tiny room for over a week. They shared it with Chase and his mom. Good news...last we heard, they were coming home for Christmas, too!
Two Things You Told Me
As long as I can remember of my time here in Wisconsin, we've cut down our tree the day after Thanksgiving. It's a tradition we've continued as the GregBats.
When we lived in New Orleans, we were so poor that one Christmas, we waited until Our Savior Lutheran School got out and took the best real tree from the classrooms - the fourth grade one - and took it home.
It was one of those small ones, probably three feet high. At home we had a front window where we put the tree, so my mom put the tree on a desk, draped the tree skirt around the tree and off the sides of the desk, and decorated it. People driving by saw a tree. Inside, it looked like a tree to us kids.
You remember things like that when its December 21 and you haven't put up a single decoration and you're trying to figure out where to get a tree. It seemed so unChristmasy to go to a lot. And we heard lots were thinned out. On top of that, we were being global warmed to the tune of -10 windchills. Can't take kids out in that.
So there Teia and I were in the hardware store, which had a bunch of live trees in the back.
I don't know. They just do.
So we're picking out a tree and it reminds me of the desk tree, and how it just looked like Christmas. I let Teia pick out the tree, shelled out the overpriced amount for it, then swung the car around the back to pick it up. We had to lower some seats, and it was cold.
But this song came on the radio, and I thought of the desk tree and Zoe. And my Dad and you all. And Teia and all my kids. About Christmas and how a tree can't really be overpriced if its going to sit in the window at home, can it? I wiped the tears out of my eyes and drove home.
Your Love Is Strong
by Jon Foreman
Heavenly Father
You always amaze me
Let your kingdom come
In my world and in my life
You give me the food I need
To live through the day
And forgive me as I forgive
The people that wronged me
Lead me far from temptation
Deliver me from the evil one
I look out the window
The birds are composing
Not a note is out of tune
Or out of place
I look at the meadow
And stare at the flowers
Better dressed than any girl
On her wedding day
So why do I worry?
Why do I freak out?
God knows what I need
You know what I need
Your love is
Your love is
Your love is strong
The kingdom of the heavens
Is now advancing
Invade my heart
Invade this broken town
The kingdom of the heavens
Is buried treasure
Will you sell yourself
To buy the one you've found?
Two things you told me
That you are strong
And you love me
Yes, you love me
Our God in heaven
Hallowed be
Thy name above all names
Your kingdom come
Your will be done
On earth as it is in heaven
Give us today our daily bread
Forgive us wicked sinners
Lead us far away from our vices
And deliver us from these prisons
When we lived in New Orleans, we were so poor that one Christmas, we waited until Our Savior Lutheran School got out and took the best real tree from the classrooms - the fourth grade one - and took it home.
It was one of those small ones, probably three feet high. At home we had a front window where we put the tree, so my mom put the tree on a desk, draped the tree skirt around the tree and off the sides of the desk, and decorated it. People driving by saw a tree. Inside, it looked like a tree to us kids.
You remember things like that when its December 21 and you haven't put up a single decoration and you're trying to figure out where to get a tree. It seemed so unChristmasy to go to a lot. And we heard lots were thinned out. On top of that, we were being global warmed to the tune of -10 windchills. Can't take kids out in that.
So there Teia and I were in the hardware store, which had a bunch of live trees in the back.
I don't know. They just do.
So we're picking out a tree and it reminds me of the desk tree, and how it just looked like Christmas. I let Teia pick out the tree, shelled out the overpriced amount for it, then swung the car around the back to pick it up. We had to lower some seats, and it was cold.
But this song came on the radio, and I thought of the desk tree and Zoe. And my Dad and you all. And Teia and all my kids. About Christmas and how a tree can't really be overpriced if its going to sit in the window at home, can it? I wiped the tears out of my eyes and drove home.
Your Love Is Strong
by Jon Foreman
Heavenly Father
You always amaze me
Let your kingdom come
In my world and in my life
You give me the food I need
To live through the day
And forgive me as I forgive
The people that wronged me
Lead me far from temptation
Deliver me from the evil one
I look out the window
The birds are composing
Not a note is out of tune
Or out of place
I look at the meadow
And stare at the flowers
Better dressed than any girl
On her wedding day
So why do I worry?
Why do I freak out?
God knows what I need
You know what I need
Your love is
Your love is
Your love is strong
The kingdom of the heavens
Is now advancing
Invade my heart
Invade this broken town
The kingdom of the heavens
Is buried treasure
Will you sell yourself
To buy the one you've found?
Two things you told me
That you are strong
And you love me
Yes, you love me
Our God in heaven
Hallowed be
Thy name above all names
Your kingdom come
Your will be done
On earth as it is in heaven
Give us today our daily bread
Forgive us wicked sinners
Lead us far away from our vices
And deliver us from these prisons
Sunday, December 21, 2008
Home.
Zoe's home from the hospital.
Honestly, I was deep deep in worrying and planning and stress and feeling a lot of pressure as we tried to get things ready for Zoe and Jen's trip home. They'd never been to this home, not with us in it.
But I met an old friend at Walmart, someone I hadn't seen in years and years. As we caught up, I started to tell him about my life, about Zoe, about the big kids and about moving. About what it's like to never consider that your daughter will be with you at Christmas, let alone home from heart surgery.
As I was talking, I thought of what I said each time I saw her - as she was being carried away by the nurse preoperatively, purple, struggling to breathe...after surgery, being wheeled down the hall...as she was extubated and when she almost died that Sunday...
Come back to me, Zoe. I wasn't begging her. I was telling her sternly. Like when you tell your kid to come inside. Now. Or when you tell your kid to go out there and play hard. You come back to me.
So much just gnawing at me. As my daughter exhibits what she thinks of doctors who say her condition is incompatible with life, my father fights a similar battle now 7 years since he was diagnosed with cancer.
To see someone 9 months and 76 years old both fighting with the same abandon and the same stakes is stunning. Both struggle with some rudimentary functions we need to live. They are both teaching me so much about life.
I used to think life was a race. Now I believe it's a brawl. An all-out, grab-whatever-you-can-and-fight brawl against this sinful, broken place.
I said this almost 9 months (exactly) ago. Go home and hug your kid. And if you don't have a kid, go home and hug your dad. And tell them you love them and thank God they are there, in your arms.
And I pray that everyone, everywhere takes a minute to give thanks for strength in our fight.
Honestly, I was deep deep in worrying and planning and stress and feeling a lot of pressure as we tried to get things ready for Zoe and Jen's trip home. They'd never been to this home, not with us in it.
But I met an old friend at Walmart, someone I hadn't seen in years and years. As we caught up, I started to tell him about my life, about Zoe, about the big kids and about moving. About what it's like to never consider that your daughter will be with you at Christmas, let alone home from heart surgery.
As I was talking, I thought of what I said each time I saw her - as she was being carried away by the nurse preoperatively, purple, struggling to breathe...after surgery, being wheeled down the hall...as she was extubated and when she almost died that Sunday...
Come back to me, Zoe. I wasn't begging her. I was telling her sternly. Like when you tell your kid to come inside. Now. Or when you tell your kid to go out there and play hard. You come back to me.
So much just gnawing at me. As my daughter exhibits what she thinks of doctors who say her condition is incompatible with life, my father fights a similar battle now 7 years since he was diagnosed with cancer.
To see someone 9 months and 76 years old both fighting with the same abandon and the same stakes is stunning. Both struggle with some rudimentary functions we need to live. They are both teaching me so much about life.
I used to think life was a race. Now I believe it's a brawl. An all-out, grab-whatever-you-can-and-fight brawl against this sinful, broken place.
I said this almost 9 months (exactly) ago. Go home and hug your kid. And if you don't have a kid, go home and hug your dad. And tell them you love them and thank God they are there, in your arms.
And I pray that everyone, everywhere takes a minute to give thanks for strength in our fight.
Friday, December 19, 2008
Saturday Homecoming Planned
Jen says that she and Zoe will be ready to leave tomorrow in the early afternoon. I'll keep you posted - including pictures of the mammoth snow that hit us today - and the snowstorm hitting us tomorrow.
I'd like to give a warm, enthusiastic thank you to Jen's parents for all of their assistance. They helped with Zoe's big brothers and even found time to help things settle over here. We're all grateful for their love and sacrifice.
I'd like to give a warm, enthusiastic thank you to Jen's parents for all of their assistance. They helped with Zoe's big brothers and even found time to help things settle over here. We're all grateful for their love and sacrifice.
Home For Christmas?
Jen says that Zoe is doing well with her numbers, and has calmed down from a long cry. "renal is 56 heart is 120 blood pressure 87 and O2 94...all that looks great."
We're still hoping to bring her home tomorrow.
We're still hoping to bring her home tomorrow.
Thursday, December 18, 2008
so close.
"We're so close...," Jen said four days ago. We are. We're so close to being able to leave Children's with Zoe but we're still waiting for everything to line up. The physicians are being cautious and methodical, which has gotten Zoe to this point. So...not today.
Supposed to snow around 12 inches tonight. Hopefully...tomorrow?
Supposed to snow around 12 inches tonight. Hopefully...tomorrow?
Wednesday, December 17, 2008
Chess
So now we're playing chess with Zoe's numbers.
Zoe's operation was successful in that it sent blood to the lungs - blood that wasn't getting there preoperatively.
But because it's a man-made fix, the doctors have to tinker with medicine to ensure the blood gets past the lungs to all the different parts of the body.
So, that's why we keep referring to a renal stat. Renal stats show that blood is getting to the kidneys, but the numbers dwindle when Zoe gets upset.
Yesterday, the doctors sedated Zoe to give her an echo. The sedation caused problems - much like earlier sedations - in that it wired Zoe up and made her agitated and jumpy, difficult to relax. Her numbers haven't been very good, but doctors are associating it with the sedative.
Zoe's still a little restless and has been up basically on the hour, but they're still attributing it to the sedative.
Slowly, the docs are trying to remove o2 and patches and things from her so they can send her home. She waited all day long for rounds to hear what baby's status is. Jen left the room for a minute, and missed them and so they'll come back to talk to her.
Soooo...we're thinking Thursday? Maybe?
P.S. for those of you not in Wisconsin, we're expecting a foot of snow Thursday night.
Zoe's operation was successful in that it sent blood to the lungs - blood that wasn't getting there preoperatively.
But because it's a man-made fix, the doctors have to tinker with medicine to ensure the blood gets past the lungs to all the different parts of the body.
So, that's why we keep referring to a renal stat. Renal stats show that blood is getting to the kidneys, but the numbers dwindle when Zoe gets upset.
Yesterday, the doctors sedated Zoe to give her an echo. The sedation caused problems - much like earlier sedations - in that it wired Zoe up and made her agitated and jumpy, difficult to relax. Her numbers haven't been very good, but doctors are associating it with the sedative.
Zoe's still a little restless and has been up basically on the hour, but they're still attributing it to the sedative.
Slowly, the docs are trying to remove o2 and patches and things from her so they can send her home. She waited all day long for rounds to hear what baby's status is. Jen left the room for a minute, and missed them and so they'll come back to talk to her.
Soooo...we're thinking Thursday? Maybe?
P.S. for those of you not in Wisconsin, we're expecting a foot of snow Thursday night.
Monday, December 15, 2008
Truth About Blogs II
Jen's advice: make sure we don't kick people for commenting. Everyone commenting has good intentions.
Good advice.
But it's the truth about blogging. We write and respond to that person's writing. I hope no one here is thinking anything past a moment of disagreement and a cross thought.
Feelings get hurt and people disagree. But we all get up and move on. We learn more by dissent than agreement, if you ask me.
I am honored by all of your support. And dissent.
Good advice.
But it's the truth about blogging. We write and respond to that person's writing. I hope no one here is thinking anything past a moment of disagreement and a cross thought.
Feelings get hurt and people disagree. But we all get up and move on. We learn more by dissent than agreement, if you ask me.
I am honored by all of your support. And dissent.
She'll Be Home For Christmas?
Please send snow and numbers that plateau and a blue eyed baby under the tree...
Doctors have Zoe on a medicine patch. At first she was on a 1/2 patch, but numbers would still dive too low when she was upset. Now she's on 3/4 patch. Hopefully this will get her to where she needs to go.
They've scheduled a echo tomorrow and Doc Frommelt is trying her hardest to make this a special Christmas.
I held Zoe tonight after she oinked down a bunch of formula and she looks pretty much like a kid. she has this kind of waving thing going with her right hand...a little like ET and a little like she's doing a Jedi mind trick on you. I'll get a video and show you soon.
Doctors have Zoe on a medicine patch. At first she was on a 1/2 patch, but numbers would still dive too low when she was upset. Now she's on 3/4 patch. Hopefully this will get her to where she needs to go.
They've scheduled a echo tomorrow and Doc Frommelt is trying her hardest to make this a special Christmas.
I held Zoe tonight after she oinked down a bunch of formula and she looks pretty much like a kid. she has this kind of waving thing going with her right hand...a little like ET and a little like she's doing a Jedi mind trick on you. I'll get a video and show you soon.
Now, Amy Hunt Is Ripping On My FEET!
So someone named AMY HUNT is ripping on my feet!
Here's her comment:
"Greg, your feet are hairy!"
Great. Thanks alot, just kick me when I'm down, AMY HUNT.
Look, just because my feet look like this:
...doesn't mean that AMY HUNT has to pick on me. They're not that bad, right?
Here's her comment:
"Greg, your feet are hairy!"
Great. Thanks alot, just kick me when I'm down, AMY HUNT.
Look, just because my feet look like this:
...doesn't mean that AMY HUNT has to pick on me. They're not that bad, right?
Sunday, December 14, 2008
The Truth About Blogs
Blogs are a strange revolution in communication. They demand honesty and voice. They are a thoughtful diary, and the audience can tell if a blog is honest or not.
The success of blogging over traditional media is that people enjoy the personal nature of them. They want to hear a human.
Then again, when you write human things, you sound human. You miss points or are emotional about one thing or the other.
I think Psalms was a little like a blog. Psalms 3:7 says, "7 Arise, O LORD!
Deliver me, O my God!
Strike all my enemies on the jaw;
break the teeth of the wicked."
Was the Psalmist advocating or requesting physical violence? What good would breaking teeth do? Maybe the Psalmist should have thought of what he was going to write before he wrote it.
I've encountered that same scrutiny with the blog. I'm NOT a Psalmist. I am just writing down thoughts and people are reading them. I have not asked anyone to read them and I don't honestly care if people do. For some people, this blog has been a blessing. I expect that my thoughts at times will create disagreement or dissension, but that's the nature of thoughts.
So...if I wanted to start a campaign against a teacher, or a doctor, hospital, or any entity, I would name that teacher doctor or entity and begin a focused campaign against them. My blog isn't a campaign against anyone.
But I get comments like this one:
"Maybe the teacher would be more considerate if you talked to her first, rather than broadcasting your issue on the internet...."
All I can say is: this comment is silliness.
1. I'm not broadcasting. Someone has to physically put an internet address in their browser to get here. If anything, I'm narrowcasting. I'm not ABC. I'm not CNN. I'm a guy writing a blog.
A. And if I wanted to make a stink on my blog, I guess I could. I could name the teacher's name, name the teacher's phone or email, name the high school, explain the class, scan and show you the homework. I could give you her home phone. I could provide pictures of the teacher in case you see her on the street. I could change the name of the blog to "Teacher X - A Threat To Humanity" and make googling her name populated with awful links.
2. I was writing about the issue. I was writing about the feeling. The exhausting feeling of having to tell everyone a story that makes me tired, let alone the tiring nature of having to retell it. With Charter Communications, I had to tell over 13 people that my wife and daughter were in the ICU.
3. I'm tired. If I can sum up the entry in question, this entry, my silence over the weekend...here you go: I'm tired.
I'm tired. I'm tired.
I'm tired and there is no end in sight. I'm tired of my children being everywhere, not seeing them. I'm tired of a fractured home. Tired of trying to communicate with Jen by phone or messenger because of of the communication challenges. I'm tired and so when I see comments like this:
what about those little boys...i bet they miss their mama and baby sister? i am praying all your kids know they are specially loved by God! and that we are praying for them too
I just throw frustrated hands in the air. Is the commenter wondering about my boys or criticizing my entry because it didn't mention them?
Of course I miss my boys. Of course I'm grateful for their grandma and grandpa who is going above and beyond anything imagined to care for them and make sure they feel safe and loved. For their sacrifice, I owe them a debt I know I'll never be able to repay. But, my boys. Of course they're suffering a strange life.
I wrote an entry about the oldest three kids because their life is so bent out of shape right now. That was not meant to contrast their life versus their brothers' lives. It was a feeling, a peek inside me...a ... blog entry!
I know...if you're blogging you have to have a hide of steel. I have to learn to let comments be comments. The blog is working if you all are moved to write back. It's blogging in its purest form.
But comments evoke feelings too. Which create...more blog entries!
The success of blogging over traditional media is that people enjoy the personal nature of them. They want to hear a human.
Then again, when you write human things, you sound human. You miss points or are emotional about one thing or the other.
I think Psalms was a little like a blog. Psalms 3:7 says, "7 Arise, O LORD!
Deliver me, O my God!
Strike all my enemies on the jaw;
break the teeth of the wicked."
Was the Psalmist advocating or requesting physical violence? What good would breaking teeth do? Maybe the Psalmist should have thought of what he was going to write before he wrote it.
I've encountered that same scrutiny with the blog. I'm NOT a Psalmist. I am just writing down thoughts and people are reading them. I have not asked anyone to read them and I don't honestly care if people do. For some people, this blog has been a blessing. I expect that my thoughts at times will create disagreement or dissension, but that's the nature of thoughts.
So...if I wanted to start a campaign against a teacher, or a doctor, hospital, or any entity, I would name that teacher doctor or entity and begin a focused campaign against them. My blog isn't a campaign against anyone.
But I get comments like this one:
"Maybe the teacher would be more considerate if you talked to her first, rather than broadcasting your issue on the internet...."
All I can say is: this comment is silliness.
1. I'm not broadcasting. Someone has to physically put an internet address in their browser to get here. If anything, I'm narrowcasting. I'm not ABC. I'm not CNN. I'm a guy writing a blog.
A. And if I wanted to make a stink on my blog, I guess I could. I could name the teacher's name, name the teacher's phone or email, name the high school, explain the class, scan and show you the homework. I could give you her home phone. I could provide pictures of the teacher in case you see her on the street. I could change the name of the blog to "Teacher X - A Threat To Humanity" and make googling her name populated with awful links.
2. I was writing about the issue. I was writing about the feeling. The exhausting feeling of having to tell everyone a story that makes me tired, let alone the tiring nature of having to retell it. With Charter Communications, I had to tell over 13 people that my wife and daughter were in the ICU.
3. I'm tired. If I can sum up the entry in question, this entry, my silence over the weekend...here you go: I'm tired.
I'm tired. I'm tired.
I'm tired and there is no end in sight. I'm tired of my children being everywhere, not seeing them. I'm tired of a fractured home. Tired of trying to communicate with Jen by phone or messenger because of of the communication challenges. I'm tired and so when I see comments like this:
what about those little boys...i bet they miss their mama and baby sister? i am praying all your kids know they are specially loved by God! and that we are praying for them too
I just throw frustrated hands in the air. Is the commenter wondering about my boys or criticizing my entry because it didn't mention them?
Of course I miss my boys. Of course I'm grateful for their grandma and grandpa who is going above and beyond anything imagined to care for them and make sure they feel safe and loved. For their sacrifice, I owe them a debt I know I'll never be able to repay. But, my boys. Of course they're suffering a strange life.
I wrote an entry about the oldest three kids because their life is so bent out of shape right now. That was not meant to contrast their life versus their brothers' lives. It was a feeling, a peek inside me...a ... blog entry!
I know...if you're blogging you have to have a hide of steel. I have to learn to let comments be comments. The blog is working if you all are moved to write back. It's blogging in its purest form.
But comments evoke feelings too. Which create...more blog entries!
Friday, December 12, 2008
The Valiant Ones
From the four inch cut in my daughter's chest to the piles and piles of packed boxes inside my front door, it's easy to say my life isn't normal.
I remember my senior year. I worried about seeing my girlfriend, paying for prom, playing time on the basketball team. Where to go to college.
Teia's senior year: she's wondering where she's sleeping. If her sister will die. If she'll see her dad. What she should pack and what she should throw away.
The truth is, I have toyed with the idea of pulling them out of school so we can just manage this troubled time. But they love school, their friends. Kellen needs basketball.
Last night I got home at 9ish. Teia was packing dishes and making snickerdoodles. Isabel was packing Jen's closet. A typical school night.
So when Isabel's teacher told her she was downgrading her for being late with homework - homework late in part because we didn't have internet for days - I just deflated.
I guess we can take pride that Isabel's teacher figures Isabel's life is so normal that she should suffer the same consequences as a kid with a normal life. My kids are living valiantly, selflessly. I am so proud of their ability to appear like any other teen.
But I'm also saddened that her teacher chose not to walk with Isabel on this. Izzi's a good kid, a smart kid. A pretty good student. In one of her blog entries recently she described how "useless" she felt in the face of Zoe's trials.
Me too. But I wish to goodness that I could bear this instead of her. That she could worry about cell phone minutes and Friday's date instead of all this.
I'll try and write to the teacher, but pray for these kids. The world they know is different than the world many of us grew up in. It's been the strength they've found in faith and the same fighting spirit their little sister shows you that has gotten them through. I just hope I can get everyone to see that.
Thursday, December 11, 2008
Too Cozy??
So Z is STILL sleeping. I think it's safe to say that Zoe has never felt better in her life and is taking full advantage of that!
Heart- 118
O2- 95
BP- high is 95
renal- 60
Heart- 118
O2- 95
BP- high is 95
renal- 60
more details from the 4th floor
So, the doc said "I will open this lung by tomorrow!"
Yep...he did. The lung is fixed.
Then the renals and blood pressure went bad...
Doc ordered Renal Ultrasound- "Kidney function is great!"
Doc said- "Giving her a good old medicine...clonidine"
10 minutes later: BP- high of 104 (was 126)Renal- 56 (was 38)
20 minutes later: BP- high of 98! Renal: 63!
PRAISE GOD and THANK YOU for prayers!!!
We like our Dr Rohit :)
FYI- Still sleeping so cozy! Please continue prayers for good numbers.
Good Day...thank you God
Yep...he did. The lung is fixed.
Then the renals and blood pressure went bad...
Doc ordered Renal Ultrasound- "Kidney function is great!"
Doc said- "Giving her a good old medicine...clonidine"
10 minutes later: BP- high of 104 (was 126)Renal- 56 (was 38)
20 minutes later: BP- high of 98! Renal: 63!
PRAISE GOD and THANK YOU for prayers!!!
We like our Dr Rohit :)
FYI- Still sleeping so cozy! Please continue prayers for good numbers.
Good Day...thank you God
Healed
Lung - reinflated. Whole again.
Kidney - looks great.
God, in your mercy, you heard our prayer.
Kidney - looks great.
God, in your mercy, you heard our prayer.
Prayer change!
OK everyone...the lung is looking MUCH better! (Almost "normal") Go God! However, oh yes there is a however! The renal numbers are back to not looking to good. We are now thinking there is more of an issue with blood flow because of kidney vrs. the heart. They are going to get a renal ultrasound to see what really is going on in there. Please pray that there is an answer. We are SO close! All other numbers and looking better and better and she eats full feeds, does the potty stuff well. This seems to be the "it" factor. So PLEASE pray for the kidneys and for an answer.
Wednesday, December 10, 2008
Good News
Jen must be liking progress because...she left the building!
Yes. She went to Ethan's Christmas program. Leaving me at the helm.
What's not to like? Renal stat is great. Sats, a little high but very good.
Dr. Rohit says he didn't like the X-ray...at first this scared me. But he was saying it like he was taking this lung thing on as a professional challenge. Like, say you were me, and I was waiting for my opponent to dribble because I knew how to handle him.
Like that.
He says - with the treatments he is recommending, (boldly, which I love) he'll have that lung issue solved tomorrow!
Go Dr. Rohit!
Yes. She went to Ethan's Christmas program. Leaving me at the helm.
What's not to like? Renal stat is great. Sats, a little high but very good.
Dr. Rohit says he didn't like the X-ray...at first this scared me. But he was saying it like he was taking this lung thing on as a professional challenge. Like, say you were me, and I was waiting for my opponent to dribble because I knew how to handle him.
Like that.
He says - with the treatments he is recommending, (boldly, which I love) he'll have that lung issue solved tomorrow!
Go Dr. Rohit!
Where Does Your Husband Work?
That's what the lady in the adjoining room asked Jen as she was getting a massage, courtesy of Mandi and Erika. Jen said some people from my work had set her up.
It's Avicom.
It's Avicom.
Dr. Frommelt Remote
Dr. Frommelt called in on her day off, just to check in on things. Yesterday was a frustrating day because Jen was hoping Zoe would relax, and she just couldn't.
Dr. Frommelt was able to listen and prescribe some Benadryl, which began all the relaxation we're experiencing now. It just took something to knock her off that plateau.
Dr. Frommelt was able to listen and prescribe some Benadryl, which began all the relaxation we're experiencing now. It just took something to knock her off that plateau.
In Which The Blogger Loses His Internet
Long story. I guess, for those of you out there, if you want to see me rant, I will gladly give you a blistering rant on Charter Communications and what they have done. So, if anyone wants that and then can compare/contrast to our measured and thoughtful responses to what's been happening here at Children's...just let me know.
I think i'll have you vote on it.
So I lost my internet at home.
And I can't tell you goings on. Sooo sorry. I missed you guys.
Zoe is doing great. Her right upper lobe of her lung is still not great, but her numbers are very good. Doctor Rohit says they are going to go through a delicate process of tinkering with meds to get her oxygen saturation correct. He also explained that studies have been done indicating that lungs do this almost within 1/2 hour of intubation. So...this is common.
I think i'll have you vote on it.
So I lost my internet at home.
And I can't tell you goings on. Sooo sorry. I missed you guys.
Zoe is doing great. Her right upper lobe of her lung is still not great, but her numbers are very good. Doctor Rohit says they are going to go through a delicate process of tinkering with meds to get her oxygen saturation correct. He also explained that studies have been done indicating that lungs do this almost within 1/2 hour of intubation. So...this is common.
Tuesday, December 09, 2008
So not true...
To those who think that we are not appreciative...
There have been several posts naming just a few of the many wonderful people who have been here taking care of Zoe and giving her the best they've got...
Frommelt
Tweddell
Elliot
Beth
Musa
Doug
Donna
Hagen
These are just a few- Make no mistake, we went through some VERY hard times here. Honestly, the heads of the departments were far more upset at their staff than us...You go through so many emotions when it's your child's life on the line...good and bad. I think we have been very clear at showing you what events are occurring and our emotions through those events. Children's has truly been amazing with what they have done, and when things happened that honestly NEVER should have happened, it was corrected immediately.
We thank God daily for the staff at Children's.
There have been several posts naming just a few of the many wonderful people who have been here taking care of Zoe and giving her the best they've got...
Frommelt
Tweddell
Elliot
Beth
Musa
Doug
Donna
Hagen
These are just a few- Make no mistake, we went through some VERY hard times here. Honestly, the heads of the departments were far more upset at their staff than us...You go through so many emotions when it's your child's life on the line...good and bad. I think we have been very clear at showing you what events are occurring and our emotions through those events. Children's has truly been amazing with what they have done, and when things happened that honestly NEVER should have happened, it was corrected immediately.
We thank God daily for the staff at Children's.
Hello from the 4th floor!
Yes, that's right...we are back up and doing better than ever! I am still restraining my happiness a bit, but our little Zoe is quite stable right now sleeping away in her bed.
Heart: 125 O2: 99 Renal: 70
Thank you God for today and for the many praying for us and our little Z. My heart is filled with so much emotion, that I don't even know what to do with myself! So I sit quietly and pray, and hope and watch the numbers...and for even a brief moment, I let out a little joy.
God's blessings on this peaceful night- Jen
Heart: 125 O2: 99 Renal: 70
Thank you God for today and for the many praying for us and our little Z. My heart is filled with so much emotion, that I don't even know what to do with myself! So I sit quietly and pray, and hope and watch the numbers...and for even a brief moment, I let out a little joy.
God's blessings on this peaceful night- Jen
Monday, December 08, 2008
The First Bottle
Zoe downed her first bottle in minutes. She has spent the whole morning begging for some food. She was upset that she couldn't have more.
Can I, just for a minute, say
TAKE THAT! CAN ALL OF YOU WHO HAVE TOLD ME ABOUT ZOE'S EATING PROBLEMS FOR THE PAST TWO WEEKS SHUT YOUR CAKEHOLES?
Thank you. Now, back to your regularly scheduled blog.
Can I, just for a minute, say
TAKE THAT! CAN ALL OF YOU WHO HAVE TOLD ME ABOUT ZOE'S EATING PROBLEMS FOR THE PAST TWO WEEKS SHUT YOUR CAKEHOLES?
Thank you. Now, back to your regularly scheduled blog.
Hotel PICU
Jen's almost at 14 days at the Hotel PICU. She slept for a bit last night on her bed.
For the first several days, she was cleaning up in a sink until Nurse Beth noticed and got her a Parent's Shower pass.
Jen's here because she loves Zoe, because she knows that Zoe needs her here, and because she knows she was instrumental in the two times Zoe was near death while here.
Encouraging Observation
Is that right now, Zoe is lying on her side and sucking an imaginary bottle. She's always loathed nuks, and she wont' take one now. But it's good to see she hasn't regressed (like the nurse on the 4th floor told us a week ago) and that she still remembers that particular integration of systems that we call the suck reflex.
Zoe and the Hazy Lung **Updated
It's a sequel. In Zoe and the Heart Surgery, Zoe faced unknown foes and a strategy of speed, using raw courage and strength to breathe and stay alive.
In this episode, Zoe faces an old nemesis - something in her right lung. One nurse called it "collapsed" in the upper right lobe. Infection? Cultures don't bear that out. What is it and what is going on? Will our hero defeat the unknown even if it LURKS IN HER OWN BODY?
**Dr. Frommelt snuck in to discuss my/our observations of Zoe's progress. She was particularly interested in the success of a different group of medicines used to calm her down. She was excited to find out that Zoe was extubated and explained that reinflating the upper right lobe is a common issue for little kids because of its location.
The collapsed lung attracts fluid which welcomes infection. While one does not cause the other, they are often seen together.
Dr. Frommelt says that with time, different positioning (something unattainable during extubation), and just increased strength, Zoe should be able to reinflate the lung. ***
Tune in. We're waiting for rounds in about an hour.
In this episode, Zoe faces an old nemesis - something in her right lung. One nurse called it "collapsed" in the upper right lobe. Infection? Cultures don't bear that out. What is it and what is going on? Will our hero defeat the unknown even if it LURKS IN HER OWN BODY?
**Dr. Frommelt snuck in to discuss my/our observations of Zoe's progress. She was particularly interested in the success of a different group of medicines used to calm her down. She was excited to find out that Zoe was extubated and explained that reinflating the upper right lobe is a common issue for little kids because of its location.
The collapsed lung attracts fluid which welcomes infection. While one does not cause the other, they are often seen together.
Dr. Frommelt says that with time, different positioning (something unattainable during extubation), and just increased strength, Zoe should be able to reinflate the lung. ***
Tune in. We're waiting for rounds in about an hour.
Sometimes, They're Wrong Part II
This is Brianna Botts. Her mom is keeping track of her growth and progress through now, her 19th month. They, too, were told she'd die - in 24 hours.
This is Annabel. Annabel has her struggles but she's with us.
Jen and I wonder if a parent was told that yes, they are pregnant with a child which has Trisomy 18, and yes, it is rare and the majority of kids don't make it...but if they were told about Annabel or Brianna or Zoe...shown pictures of those girls..what would they decide? What about you? Would you join the other over 99% of parents and abort? Join with those medical professionals who deem them incompatible with life?
This is Annabel. Annabel has her struggles but she's with us.
Jen and I wonder if a parent was told that yes, they are pregnant with a child which has Trisomy 18, and yes, it is rare and the majority of kids don't make it...but if they were told about Annabel or Brianna or Zoe...shown pictures of those girls..what would they decide? What about you? Would you join the other over 99% of parents and abort? Join with those medical professionals who deem them incompatible with life?
Sunday, December 07, 2008
When I Say Secretions, I Mean Like Willy Wonka Secretions
Zoe while INTUBATED, exhibits a familial gift to blow bubbles out of her nose.
EXTUBATE. NOT INTUBATE. EXTUBATE.
EXTUBATION COMPLETE.
Zoe's lying rather comfortably in mommy's arms. The ever-present beep beep and tubes accompany, but there she is. Maxing. Relaxing.
The doctors will keep on eye on her stats and also periodically use a high flow of oxygen through a mask into her lungs to make sure they are working ok.
Dad tried to hold her and did ok, but Zoe's still a lot traumatized. Mommy says she spent her first several minutes with her hands shoved in her mouth, defensively trying to keep the stupid people from shoving stuff down her her throat. (Zoe's words, not mine.)
The New EXTUBATION Schedule?
It looks like we might still try to extubate today. ICU is still waiting to see some numbers and how they work with other numbers and different medicines.
FYI
I guess to some of you it sounded like I left seven of my children all night for a rock concert, swung by Zoe's room for the rest of the night, then hustled home to continue my role as an less-then-attentive father to my kids. That didn't happen.
I'm a pretty good dad. You can ask around.
I'm a pretty good dad. You can ask around.
zoe's uncle does hollywood
Zoe's Uncle Josh was asked to sing at the Christmas Tree Lighting in Hollywood, California. He opened for American Idol runner-up David Archuleta and Teia found this video of him performing. Honestly, the audio is so bad that the only reason I'm showing you this is that no one we know took the video. It's just youtubed like...like he's a rockstar by someone who is obviously digging his chili.
Saturday, December 06, 2008
Holding/Held
I went to see my friend Longhair play with his band last night. I only caught part of it but that's what you do when you have been held like I have. Avicom - the people there - have worked so hard to hold Zoe and the rest of us up. They are the slippers on Jen's feet. They are the food in our refrigerator. The texts of love and support.
Oh, and the band - "Act Your Age" was really good. Ok, I know Longhair, and he's way too nice to be in a band with lyrics that angry, but that didn't mean that he wasn't terrific.
Then I went to Children's to hold Zoe's hand. The nurse said that Zoe might get anxious and then they'd give her something to calm her down.
For those of you who have been reading this a while, you know Zoe and I tended to spend a lot of 12-3 am together preoperatively. So I held her hand and talked to her and mostly we just kind of stared at each other. Her grip is intense, so tight that at times I'd pull my finger out and get the circulation back. Sometimes she'd hold my finger with both hands.
The whole time, she was chewing and chewing at her tube. I think it's because she's getting food through a tube and since her tummy is full, she thinks the chewing is making it come. But regardless, the chronology of activities has been chew chew until you get very very frustrated and then lose it. Then they sedate you, you wake up, and you start all over.
So for that hour and half, we didn't get to despair or angst or elevated heart. Just staring and talking.
At 2:30 I went to talk to Jen. After some minutes, I heard something and moved to see Zoe crying silently through the tube. Face smeared with sadness. The nurse came in and sedated her but now...now I think she thinks like me. She belongs home. And she has one. We're ready to go home.
Oh, and the band - "Act Your Age" was really good. Ok, I know Longhair, and he's way too nice to be in a band with lyrics that angry, but that didn't mean that he wasn't terrific.
Then I went to Children's to hold Zoe's hand. The nurse said that Zoe might get anxious and then they'd give her something to calm her down.
For those of you who have been reading this a while, you know Zoe and I tended to spend a lot of 12-3 am together preoperatively. So I held her hand and talked to her and mostly we just kind of stared at each other. Her grip is intense, so tight that at times I'd pull my finger out and get the circulation back. Sometimes she'd hold my finger with both hands.
The whole time, she was chewing and chewing at her tube. I think it's because she's getting food through a tube and since her tummy is full, she thinks the chewing is making it come. But regardless, the chronology of activities has been chew chew until you get very very frustrated and then lose it. Then they sedate you, you wake up, and you start all over.
So for that hour and half, we didn't get to despair or angst or elevated heart. Just staring and talking.
At 2:30 I went to talk to Jen. After some minutes, I heard something and moved to see Zoe crying silently through the tube. Face smeared with sadness. The nurse came in and sedated her but now...now I think she thinks like me. She belongs home. And she has one. We're ready to go home.
Friday, December 05, 2008
Zoe Keeps Chugging Along
So if you asked me today what I think, I think Zoe is doing better than before, which means she might be better than she's ever been. Her heart works. Her skin is slowly getting pink. She's intubated but her breathing is actually stronger than the vent. She held my hand today and maintains her Kung Fu grip.
I'm not sure how much longer she'll be intubated. Docs say they still see something in her right lung, but aren't sure if that's tube position. I have no idea what that means.
I've told a lot of you how proud I am of my daughter. She isn't surviving. She's fighting and winning. She's strengthened by your prayers, blessed by our Father, living in Grace.
Dare You To Move
Got a few questions about "Dare You To Move." It's a phrase from a song by Switchfoot. The song is a call to live in get up off the floor, take off your grave clothes, and live. Walk in grace. Move.
It's been an anthem of mine through a life filled with some really bad, life altering decisions. The Bible says, "If the Son has set you free, you are free indeed." If you believe that, then you must live it. Live like today never happened. Forgiveness is right where you fell.
Dare You To Move
by Switchfoot
Welcome to the planet
Welcome to existence
Everyone's here
Everybody's watching you now
Everybody waits for you now
What happens next?
I dare you to move
I dare you to move
I dare you to lift yourself up off the floor
I dare you to move
I dare you to move
Like today never happened
Today never happened before
Welcome to the fallout
Welcome to resistance
The tension is here
The tension is here
Between who you are and who you could be
Between how it is and how it should be
Maybe redemption has stories to tell
Maybe forgiveness is right where you fell
Where can you run to escape from yourself?
Where you gonna go?
Where you gonna go?
Salvation is here
I dare you to move
I dare you to lift yourself up off the floor
I dare you to move
Like today never happened
Today never happened
It's been an anthem of mine through a life filled with some really bad, life altering decisions. The Bible says, "If the Son has set you free, you are free indeed." If you believe that, then you must live it. Live like today never happened. Forgiveness is right where you fell.
Dare You To Move
by Switchfoot
Welcome to the planet
Welcome to existence
Everyone's here
Everybody's watching you now
Everybody waits for you now
What happens next?
I dare you to move
I dare you to move
I dare you to lift yourself up off the floor
I dare you to move
I dare you to move
Like today never happened
Today never happened before
Welcome to the fallout
Welcome to resistance
The tension is here
The tension is here
Between who you are and who you could be
Between how it is and how it should be
Maybe redemption has stories to tell
Maybe forgiveness is right where you fell
Where can you run to escape from yourself?
Where you gonna go?
Where you gonna go?
Salvation is here
I dare you to move
I dare you to lift yourself up off the floor
I dare you to move
Like today never happened
Today never happened
Thursday, December 04, 2008
We Like Doug
The resident.
Because when he switched back over to our side of the floor after a few days away, he noticed that the xray that had been scheduled six hours before hadn't happened. He talked and listened to Jen.
The tube isn't too deep inside her. She's just been very uncomfortable. Jen was able to help Zoe do a whole bunch of pooping and a nurse noted that her intubation tube was position incorrectly.
Hopefully this all means a more peaceful baby. There is talk of extubation tomorrow. We'll find out.
Because when he switched back over to our side of the floor after a few days away, he noticed that the xray that had been scheduled six hours before hadn't happened. He talked and listened to Jen.
The tube isn't too deep inside her. She's just been very uncomfortable. Jen was able to help Zoe do a whole bunch of pooping and a nurse noted that her intubation tube was position incorrectly.
Hopefully this all means a more peaceful baby. There is talk of extubation tomorrow. We'll find out.
Lessee. We've Had Blue, Pink...Now Yellow
Zoe has turned yellow on us. Her internal organs went through some shock with her last episode (Sunday's Funfest). Tests show they're working ok, and on their way back, so this is apparently just a bump in the road.
Bump. Bump.
The goal is to get her very stable and numbers good, slowly, carefully wean off the vent, and then extubate. We don't necessarily hear Dr. Musa say extubate tomorrow.
Jen says that her most recent chest x-ray shows something, so Jen would just as soon leave her intubated.
Which sucks. I'm very very bad at looking at my kid hurting or restless or fidgeting with the tube. I have to take a breath before I just pull everything out and take her home.
Bump. Bump.
The goal is to get her very stable and numbers good, slowly, carefully wean off the vent, and then extubate. We don't necessarily hear Dr. Musa say extubate tomorrow.
Jen says that her most recent chest x-ray shows something, so Jen would just as soon leave her intubated.
Which sucks. I'm very very bad at looking at my kid hurting or restless or fidgeting with the tube. I have to take a breath before I just pull everything out and take her home.
Wednesday, December 03, 2008
Fentanyl Questions
Dr. Musa says that Zoe's uneasiness is a reaction to her vent, which wasn't at a good setting. She says that airflow problems caused Zoe to be uneasy, and that adjusting the vent will make her happier.
Beth, Zoe's nurse, had told the doctors on rounds that she saw baby's lips smacking, the discomfort, the hand movements that she thought was withdrawal.
Dr. Musa disagreed.
My big sis sent me this. I instant messaged Jen. Jen just messaged me to say that Zoe was extremely uncomfortable and crying. Jen was working hard to calm her down. Finally, Jen got her to rest...with morphine.
That's what you use to start weaning someone from a powerful opioid. So perhaps it is Dr. Musa's new vent setting - or perhaps its withdrawal. We'll have to wait to find out.
Beth, Zoe's nurse, had told the doctors on rounds that she saw baby's lips smacking, the discomfort, the hand movements that she thought was withdrawal.
Dr. Musa disagreed.
My big sis sent me this. I instant messaged Jen. Jen just messaged me to say that Zoe was extremely uncomfortable and crying. Jen was working hard to calm her down. Finally, Jen got her to rest...with morphine.
That's what you use to start weaning someone from a powerful opioid. So perhaps it is Dr. Musa's new vent setting - or perhaps its withdrawal. We'll have to wait to find out.
Withdrawal?
Zoe's fever is down, but some of the folks here think it's down because she was given sedatives again. So she might have become a little dependent on the sedatives, which would cause the fever once they are removed from her system.
The nurse this am says the fever, in her opinion, was caused by agitation, not infection, because it's down now that she went back on sedatives. We're waiting cultures to confirm.
Zoe is actually trying to cough through the tube, which is a great sign. So on we go.
The nurse this am says the fever, in her opinion, was caused by agitation, not infection, because it's down now that she went back on sedatives. We're waiting cultures to confirm.
Zoe is actually trying to cough through the tube, which is a great sign. So on we go.
Find Rest
5 Find rest, O my soul, in God alone;
my hope comes from him.
6 He alone is my rock and my salvation;
he is my fortress, I will not be shaken.
7 My salvation and my honor depend on God [a] ;
he is my mighty rock, my refuge.
8 Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.
Selah
Psalm 62:5-8 (New International Version)
my hope comes from him.
6 He alone is my rock and my salvation;
he is my fortress, I will not be shaken.
7 My salvation and my honor depend on God [a] ;
he is my mighty rock, my refuge.
8 Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.
Selah
Psalm 62:5-8 (New International Version)
Tuesday, December 02, 2008
help
help zoe with your prayers. and jen and me as we again ride this awful rollercoaster. zoe's fever is up to 39.2 celsius, 102.56. They're trying to give multiple sedatives to bring it down. And morphine.
Home
Home and eating dinner at the table (on paper plates, but...home). Salads for everyone - everyone but Zoe and Jen, who we pray join us soon - and some playing. Running and jumping on the furniture until you're caught. Fighting over chores. Pudding and Cool Whip for dessert. Home. Bedtime and prayers and long sighs about school. Home.
When To Extubate
Jen's hearing whispers and talk about extubation. While Zoe's stats have been very good, her temperature is as high as 39 degrees Celsius.
Our fear is that the fever is a sign of infection, and that we'll be going down the same path we went before.
We're scrambling because we don't really know any doctors to call for decent advice. But we'll try to get answers as soon as we can.
Our fear is that the fever is a sign of infection, and that we'll be going down the same path we went before.
We're scrambling because we don't really know any doctors to call for decent advice. But we'll try to get answers as soon as we can.
Big Eyes
Zoe was up from about 4 this morning until after 7 ... just looking around. She can't talk or grunt with the tubes in her mouth but she's obviously trying to acclimate herself with the world.
The doctors have completely stopped giving her the Fentenyl, the sedative, so now she's operating with pain relief medicines...and more awake. This is the most alert I've seen her since she's been in the hospital.
The doctors have completely stopped giving her the Fentenyl, the sedative, so now she's operating with pain relief medicines...and more awake. This is the most alert I've seen her since she's been in the hospital.
Monday, December 01, 2008
Dethickening The Heart
Zoe's latest ultrasound shows her heart is not as thick as it was pre-surgery! Ummmm. This is the best news you have received in a while. Believe me.
**Wait. In case you don't know what thickened heart is, its a congenital heart disease that happens...no one knows why or how or what to do with it.
One of the biggest reasons we chose the shunt is the doctors were concerned about Zoe's "severely" thickened heart.
Now read the first paragraph again.
**Wait. In case you don't know what thickened heart is, its a congenital heart disease that happens...no one knows why or how or what to do with it.
One of the biggest reasons we chose the shunt is the doctors were concerned about Zoe's "severely" thickened heart.
Now read the first paragraph again.
tired
mom and dad are tired. and we might have another week of this ahead! zoe is (thankfully) getting a ton of rest. she certainly deserves it.
The Reason God Let Jen Sleep
I stayed up most of the night with Zoe. I told Jen I'd wake her at 3 but I really had no intention of doing that.
While Jen was upstairs, a little boy in the room across from us was called home. He's a little button, and doctors have been working on him intensely for hours and hours.
His mom experienced the anguish you can never imagine. She mourned her son's loss, calling out "Oh my baby!" over and over again, and , "No!"
A nurse came to shut our doors, but even through our shut doors and her shut doors, I heard this mother struggle and stagger and cry out.
It's not my story, and I never want or wanted this blog to be painful or hard to read. But it's echoing in my head still, so I thought I'd tell you that we live in this broken place where there is no hope outside of Jesus. God send angels and people to console that mother.
While Jen was upstairs, a little boy in the room across from us was called home. He's a little button, and doctors have been working on him intensely for hours and hours.
His mom experienced the anguish you can never imagine. She mourned her son's loss, calling out "Oh my baby!" over and over again, and , "No!"
A nurse came to shut our doors, but even through our shut doors and her shut doors, I heard this mother struggle and stagger and cry out.
It's not my story, and I never want or wanted this blog to be painful or hard to read. But it's echoing in my head still, so I thought I'd tell you that we live in this broken place where there is no hope outside of Jesus. God send angels and people to console that mother.
The Great Connector
ATTENTION BATBLOG CUSTOMERS:
Amy Hunt, my sister Deirdre wants to get in touch with you. Can you comment back with your email so she can reach out?
Amy Hunt, my sister Deirdre wants to get in touch with you. Can you comment back with your email so she can reach out?
More Zoe Update
Dr. Musa just had a very good conversation with us about Zoe. She said there IS infection in Zoe's trachea that will be treated with antibiotics.
Dr. Musa said that they will move slower because removing her from the tube was tenuous before. That might be because of infection, or her breathing, or both.
We wanted to establish that Zoe didn't have feeding problems before, and pretty limited breathing issues. We keep hearing people saying that Zoe had those issues as persistent or pre-surgery.
Dr. Musa said that while Zoe ate before, she didn't eat enough, evidenced by her small size. Given her size and age, she would be classified as someone who isn't eating well.
It's a good point, but it means that ignorance is our fault. We should have known our physician was giving us bad advice and disobeyed it with the correct tactic - feeding her more calories and more food (directly the opposite of what our pediatrician had advised).
Dr. Musa's point - and I have deep respect for anyone speaking intelligently from their heart - is that a new baseline has been established. Zoe, with a functional heart, with an intubation tube, post-surgery. None of those things have happened before.
And the new baseline might not include bottle feeding. Or breathing without assistance like before. We'll have to find out.
Dr. Musa said that they will move slower because removing her from the tube was tenuous before. That might be because of infection, or her breathing, or both.
We wanted to establish that Zoe didn't have feeding problems before, and pretty limited breathing issues. We keep hearing people saying that Zoe had those issues as persistent or pre-surgery.
Dr. Musa said that while Zoe ate before, she didn't eat enough, evidenced by her small size. Given her size and age, she would be classified as someone who isn't eating well.
It's a good point, but it means that ignorance is our fault. We should have known our physician was giving us bad advice and disobeyed it with the correct tactic - feeding her more calories and more food (directly the opposite of what our pediatrician had advised).
Dr. Musa's point - and I have deep respect for anyone speaking intelligently from their heart - is that a new baseline has been established. Zoe, with a functional heart, with an intubation tube, post-surgery. None of those things have happened before.
And the new baseline might not include bottle feeding. Or breathing without assistance like before. We'll have to find out.
Low Cardiac Output Syndrome
We're listening in on rounds. Elliot said earlier this AM that "Slow and steady wins the race." Sounds like that's the new direction here.
Our guy Doug is giving his recommendations to the rounds before the two attendings - Dr. Musa, who was here yesterday and all weekend, and Dr. Gudousky, who is in today.
Doug says Zoe showed "Low Cardiac Output Syndrome" yesterday, and presented his plan, it sounds approved. No extubate today. Dropping the amount of vent usage so that Zoe has a bigger control over her own breathing, while still vent assisted.
Cultures show no infection.
They will start to reduce the sedative significantly, and address Zoe's pain concerns with doses of pain management.
I'm in on this strategy. I'd like to see Zoe a little more responsive and lucid and in control, with two good lungs, before extubation.
Updates coming soon....Doug and Dr. Musa will return to go over my notes.
Our guy Doug is giving his recommendations to the rounds before the two attendings - Dr. Musa, who was here yesterday and all weekend, and Dr. Gudousky, who is in today.
Doug says Zoe showed "Low Cardiac Output Syndrome" yesterday, and presented his plan, it sounds approved. No extubate today. Dropping the amount of vent usage so that Zoe has a bigger control over her own breathing, while still vent assisted.
Cultures show no infection.
They will start to reduce the sedative significantly, and address Zoe's pain concerns with doses of pain management.
I'm in on this strategy. I'd like to see Zoe a little more responsive and lucid and in control, with two good lungs, before extubation.
Updates coming soon....Doug and Dr. Musa will return to go over my notes.
49 States
Almost 15 percent of the Batblog's new visitors are from ...California. And no one from Vermont has visited the blog at all in the last month. But Hawaii, yep. what a ride. If anyone would like to try to make any sense of the blog's statistics, have at it.
What If You Were A Junior In High School
And your little sister was bouncing in and out of heart surgery and the ICU? Izzi's blog is pretty raw and honest. I love this post. C'mon Zoe. Let's go make a snow angel.
3 AM Suction
Nurse Kate and another helper suctioned out Zoe at 3 AM. And so I came after them and held her hand and talked to her a bit. Zoe's got the extra-strong KungFu grip.
I went and played her a little Robbie. Cuz it's me and Zoe dancing in the ICU and it's 3 am and we're still alive.
I went and played her a little Robbie. Cuz it's me and Zoe dancing in the ICU and it's 3 am and we're still alive.
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