Where to begin...
As the past couple blogs have indicated, Duncan had been moving in the right direction. The docs informed us on Thursday that the only thing keeping him from returning home was transitioning from the NG feeding tube to feeding through a bottle. In fact, Thursday was his "graduation" from the intensive care unit to the step down unit. Both Scott and I, at separate times, were able to hold and rock our little guy that day.
Friday morning at 1:30 am we received a phone call from Children's explaining that Duncan had taken a turn for the worst. The Nurse Practioner explained that he "coded," meaning Duncan went into cardiac arrest.
We swooped up Jackson and headed immediately to the hospital to enter a scene with Duncan still very much in danger. He had been transferred back to the ICU at that point, and was using the ventilator to breathe fully for him and medications to make his heart pump correctly. He repeated the cardiac arrest episode at about 7:00am, this time us looking on (Jackson, at this point, had been safely transferred to Lynette).
We called in the troops at that point and spent the day in his hospital room with beloved family and friends in a prayerful state of peace. Part of this peace for Scott and I was getting the opportunity to hold Duncan and sharing stories of his nearly 5 months of life. Duncan was resting comfortably. Scott and I had multiple conversations with Dr. Cua, Dr. Lee, and Dr. G. We were asking the question that could not be answered: Is there a way Duncan can "come out" of this? If not, we felt that we needed to be Duncan's voice and make a hard decision. After several walks and talks, Scott and I decided to allow Duncan to make that decision for us; we would continue what was sustaining him at the time, but not use further intervention if he were to worsen.
He let us know it was time at 9:41pm Friday evening. His heart stopped beating. Dr. Cua waited one minute and then told us he was gone. We asked for Duncan to guide us and he did. For this reason, we feel a sense of peace.
The arrangements for Duncan are as follows:
Monday, October 29th at Powell United Methodist Church (825 East Olentangy Road)
Visitation: 3:00-5:00 pm
Service: 5:30 -6:00 pm
We ask that, in lieu of flowers, gifts be made in the form of donations to Nationwide Children's Hospital's Heart Center in memory of Duncan Rann Arthur.
Saturday, October 27, 2007
Thursday, October 25, 2007
Not Yet
Grandma Lynette purchased this exersaucer (or whatever it's called) at a yard sale this summer. She had been storing it in her basement until the boys were age appropriate. We busted it out yesterday for Jackson. It might be hard to tell, but try to find his toes. They are nowhere close to the base. He was just "hanging" in mid air. So halarious, because he minded not one bit.
This is a night outfit. It cracks me up with its long-john look and a type of hat that only an old man holding a candle lantern would wear.
This is a night outfit. It cracks me up with its long-john look and a type of hat that only an old man holding a candle lantern would wear.
Wednesday, October 24, 2007
Better and Better
Duncan now! Just a little oxygen to assist his breathing. Otherwise, doesn't he look good! Eyes open and everything!
My favorite part of today.Just as we have learned that things can get rapidly worse in a short amount of time when your kid is in a critical state, we have also been shown that things can get rapidly better in a short amount of time as well! In a 24 hour period of time, Duncan has shed lines and tubes and leads like it's his job. As mentioned yesterday, the breathing tube and EEG leads (from his head) are gone. Today he shed the arterial line in his groin and his catheter (ouch!). So - you know what that means - I could HOLD him! It was truly a treat.
Dr. Golden, his eye doctor, visited us and put back in his contact lens. We talked for awhile about nystagmus. We are eager to know just how poor his vision will be. Dr. Golden said we will have vague, but better, indication of those answers when he is 7-8 months (6 months after due date).
Go Bucks! This is the hat/scarf combo Lisa, Becky's sister, made for the guys!
Here at home, Jackson was hanging out with Nancy today. He has a few new tricks. I think he may make the flip from his back to his belly any day now. He keeps hammering down his one leg, quickly snapping his body to the side and ALMMMOOOOOST over to the other side. But not yet. He also loves engaging in conversation. I make a sound (usually a loud one), then he
mimicks. It's precious. We also have discovered that when he is pensively mulling something over, he gnaws on his tongue. A strange, yet endearing habit. We tried cereal for the second time yesterday and this time he did much better: only spewing back out 95% of what was put in, in comparison to 100% the first try. He's a kick.
Yummy in Jackson's tummy
I love this disapproving look. Apparently, Jackson didn't want to play "pee pie" anymore.
Tuesday, October 23, 2007
Breathing on his own!
Our expectations were met today when Duncan's breathing tube was removed. He did the expected coughing and gagging, but now he is breathing normally. It is amazing the difference having that tube out of his mouth makes, not to mention the fact that he is no longer knocked out with narcotics. Although a big groggy and hoarse, our Duncan is back.
The Wellington School Pre-K class all wrote letters to Duncan and presented them individually to Scott at work. You can see them all in this picture. We believe that their letters of love is a reason why he is doing so well! Thank you, Pre-K (and, mostly, their teacher!). What an exceptional act of support.
The EEG leads (those thingamabobs on this head) were removed today, although the picture shown is before that happened. The EEG revealed that no seizure activity occured during the 24 hour period Duncan was monitored.
We have been humbled by the outpour of love and support. We have a long road ahead, but are enjoying today's successes. The next steps are to get Duncan feeding orally and to leave that cursed/blessed hospital (such a love/hate relationship!).
[OK, so I'm not being permitted to upload pics right now. The feature with blogger is in repair. But take my word for it, the pic of those darling preK cards on Duncan's crib is pretty awesome]
The Wellington School Pre-K class all wrote letters to Duncan and presented them individually to Scott at work. You can see them all in this picture. We believe that their letters of love is a reason why he is doing so well! Thank you, Pre-K (and, mostly, their teacher!). What an exceptional act of support.
The EEG leads (those thingamabobs on this head) were removed today, although the picture shown is before that happened. The EEG revealed that no seizure activity occured during the 24 hour period Duncan was monitored.
We have been humbled by the outpour of love and support. We have a long road ahead, but are enjoying today's successes. The next steps are to get Duncan feeding orally and to leave that cursed/blessed hospital (such a love/hate relationship!).
[OK, so I'm not being permitted to upload pics right now. The feature with blogger is in repair. But take my word for it, the pic of those darling preK cards on Duncan's crib is pretty awesome]
*** Now we're in business!!! I got the picture to post.
Recovery back on track
The tough thing about our time in the ICU this past week is that each seizure episode has haulted Duncan's general recovery process. His body (lungs, digestive track, etc) is still trying to get back to its normal functioning level from the surgery on Wednesday. The goal has been to progressively return to normal feeds (through the NG tube) and to progressively wean him from the ventilator. And to progressively reduce his seditives so he is doing things for himself.
But with each episode of seizing, the protocol is to essentially reduce any work his body has to do. Which means, stop the feeds, increase the ventilator settings, and put him under more anesthetics. So, we get the seizures to stop and begin climbing up that recovery mountain again, only to tumble backwards again.
I mention this frustration to counter it with some excitement that today is the day Duncan is expected to be extibated! We think the right medicines are in action to keep the seizures at bay and he is finally down to the lowest settings on the vent and he is tolerating the feeds marvelously. So, we are crossing our fingers that he will A) breathe with no assistance and get that stinkin tube out of his throat and B) come to life when they wean him off the sedatives and maybe even C) drink milk from a bottle! More than anything, I miss my little boy. It has been exactly 1 week since we have seen him awake and alert. I am so excited.
Right now, Ricci and Diane are with him at Children's. I have chosen to spend some time with Jackson this morning and get caught up a bit. Then, Scott and I are heading there after lunch! We hope to see all these developments unfold with our own four eyes! Yey.
But with each episode of seizing, the protocol is to essentially reduce any work his body has to do. Which means, stop the feeds, increase the ventilator settings, and put him under more anesthetics. So, we get the seizures to stop and begin climbing up that recovery mountain again, only to tumble backwards again.
I mention this frustration to counter it with some excitement that today is the day Duncan is expected to be extibated! We think the right medicines are in action to keep the seizures at bay and he is finally down to the lowest settings on the vent and he is tolerating the feeds marvelously. So, we are crossing our fingers that he will A) breathe with no assistance and get that stinkin tube out of his throat and B) come to life when they wean him off the sedatives and maybe even C) drink milk from a bottle! More than anything, I miss my little boy. It has been exactly 1 week since we have seen him awake and alert. I am so excited.
Right now, Ricci and Diane are with him at Children's. I have chosen to spend some time with Jackson this morning and get caught up a bit. Then, Scott and I are heading there after lunch! We hope to see all these developments unfold with our own four eyes! Yey.
Monday, October 22, 2007
Been awhile, so I thought I'd give some visuals
Becky and her sister, Lisa, with KK's help, created these fun racing shirts for the half marathon (unfortunately, we didn't get to run it, but my buddy Theresa recruited some others to run in Duncan's honor!)
Today the neurologist ordered an EEG, which is a constant monitor of the brain. These "nodes" (no idea what the proper description is) are essentially glued onto his head (a total of about 30) and we can now tell when any seizure activity starts up. Before, it was difficult to know whether some of his movements were simply squirming or true seizing.
Jackson and his parents. He is getting passed around to all sorts of folks during our visits to the hospital, but he's social, so he's handling it pretty well. He misses his brother, though.
Hanging In
Just a quick entry:
Sunday was a pretty good day for little Duncan. Although he had suffered those multiple seizures Saturday evening, we awoke Sunday to find him in a pretty stable situation. In fact, the ICU docs were working to challenge him by reducing the setting on the ventilator. He only had one oxygen saturation drop (unlike previous days) and the infection in the lungs was mending (less secretions they had to suction out). The drug they had begun to eliminate the seizuring seemed to be keeping them at bay.
Then 3:30am came this morning. When your phone rings at 3:30am, your whole body stiffens. We were called to be notified that he seized two more times. They started a second anti-seizure drug at that time. He seized twice more at about 8:45am this morning, right before we arrived at the hospital. The seizures, as it was explained to us, are still a result of aggrivation and irritation in the brain resulting from the injuery it suffered from the stroke. The seizures themselves are not harmful (unless occurring for long periods of time -30-45 minutes - which is not the case), but the goal is still to prevent them with the right "cocktail" of drugs. It's just experimentation until that amount is discovered.
He just left his room to get an MRI done. The neurologists will be speaking with us this afternoon to give us some clarity that hopefully that test offered.
Just wanted to update. Thanks.
Sunday was a pretty good day for little Duncan. Although he had suffered those multiple seizures Saturday evening, we awoke Sunday to find him in a pretty stable situation. In fact, the ICU docs were working to challenge him by reducing the setting on the ventilator. He only had one oxygen saturation drop (unlike previous days) and the infection in the lungs was mending (less secretions they had to suction out). The drug they had begun to eliminate the seizuring seemed to be keeping them at bay.
Then 3:30am came this morning. When your phone rings at 3:30am, your whole body stiffens. We were called to be notified that he seized two more times. They started a second anti-seizure drug at that time. He seized twice more at about 8:45am this morning, right before we arrived at the hospital. The seizures, as it was explained to us, are still a result of aggrivation and irritation in the brain resulting from the injuery it suffered from the stroke. The seizures themselves are not harmful (unless occurring for long periods of time -30-45 minutes - which is not the case), but the goal is still to prevent them with the right "cocktail" of drugs. It's just experimentation until that amount is discovered.
He just left his room to get an MRI done. The neurologists will be speaking with us this afternoon to give us some clarity that hopefully that test offered.
Just wanted to update. Thanks.
Sunday, October 21, 2007
A Bad Night
We had decided to spend the latter part of yesterday breaking from the hospital... visited with the Lehmans for the OSU game and then with Lynette and Henry for a pre-race carb meal, Jackson in tow.
Our update calls to the hospital all day had reported nothing out of the ordinary. Then, Scott received a call from the ICU doc at about 8:00pm. Duncan had had another bout of seizure-like symptoms. This time (unlike Tues night when there were some mixed feelings about what Duncan experienced), there was no doubt that it was indeed a series of seizures. His right arm was rhythmic and both his legs were stiff and flexing over and over. The nurse said he probably had 5 altogether.
When we arrived at the hospital (this time flying down I-71), Duncan had just returned from the CT scan. We had to wait a couple more minutes for Dr. Swartz (the ICU doc) to read the results to us. He explained that Duncan had suffered a stroke. There was some damage the scan showed to a portion of the right side of his brain. At this point, noone knows the impact this will have on little Duncan. Of course, our minds are filled with the best and worst-case possibilities. The only refreshing news is that strokes in young babies are unpredictable, because - since the brain is still forming - it has the power to rewire the work that the damaged part normally does to new parts of the brain. In other words, the damage has the potential to be limited. But, clearly, we will not know either way for quite some time.
One cannot help but wonder if his eye problems, that nystagmus issue in particular, are related to a deficiency in the brain. The CT from several weeks back showed nothing, but we never had the opportunity to get the desired MRI done (because his previous stint had been placed too soon prior to).
We stayed overnight in the hospital because he experienced two more seizures in our presence after the inital ones. We weren't about to say, "See ya." They had been experimenting with trying to find the right amount of anti-seizure medication. I think at this point the magic amount has been found, because he was peaceful the remainder of the evening.
Neurology will be making a visit first thing this morning. We'll get more information then, hopefully. Probably more tests. Now we have to crack this case. I feel like we've cracked too many cases.
We are devastated. It just seems like too much right now, quite honestly. Scott and I decided to forego the half marathon this morning. We are too stressed and under-rested. As always, we refuse to underestimate our faith... we realize that God's hand is wrapped around all of us... but, as I'm sure it is easy to understand, we feel that there's not much more we can handle. Please keep Duncan in your prayers. We have not witnessed him awake since Tuesday afternoon and we miss our little guy.
Our update calls to the hospital all day had reported nothing out of the ordinary. Then, Scott received a call from the ICU doc at about 8:00pm. Duncan had had another bout of seizure-like symptoms. This time (unlike Tues night when there were some mixed feelings about what Duncan experienced), there was no doubt that it was indeed a series of seizures. His right arm was rhythmic and both his legs were stiff and flexing over and over. The nurse said he probably had 5 altogether.
When we arrived at the hospital (this time flying down I-71), Duncan had just returned from the CT scan. We had to wait a couple more minutes for Dr. Swartz (the ICU doc) to read the results to us. He explained that Duncan had suffered a stroke. There was some damage the scan showed to a portion of the right side of his brain. At this point, noone knows the impact this will have on little Duncan. Of course, our minds are filled with the best and worst-case possibilities. The only refreshing news is that strokes in young babies are unpredictable, because - since the brain is still forming - it has the power to rewire the work that the damaged part normally does to new parts of the brain. In other words, the damage has the potential to be limited. But, clearly, we will not know either way for quite some time.
One cannot help but wonder if his eye problems, that nystagmus issue in particular, are related to a deficiency in the brain. The CT from several weeks back showed nothing, but we never had the opportunity to get the desired MRI done (because his previous stint had been placed too soon prior to).
We stayed overnight in the hospital because he experienced two more seizures in our presence after the inital ones. We weren't about to say, "See ya." They had been experimenting with trying to find the right amount of anti-seizure medication. I think at this point the magic amount has been found, because he was peaceful the remainder of the evening.
Neurology will be making a visit first thing this morning. We'll get more information then, hopefully. Probably more tests. Now we have to crack this case. I feel like we've cracked too many cases.
We are devastated. It just seems like too much right now, quite honestly. Scott and I decided to forego the half marathon this morning. We are too stressed and under-rested. As always, we refuse to underestimate our faith... we realize that God's hand is wrapped around all of us... but, as I'm sure it is easy to understand, we feel that there's not much more we can handle. Please keep Duncan in your prayers. We have not witnessed him awake since Tuesday afternoon and we miss our little guy.
Thursday, October 18, 2007
Slow but Steady Wins the Race
Duncan is the tortoise in that age-old children's story. But, as you recall, despite the anxiety of the crowd (whose perspective is not told in the story) cheering for him from the sidelines, the tortoise does pull through in the end.
So that's how we feel: eager onlookers anxious for more improvements sooner. We had three goals for Duncan today. That he be strong enough to wake up from his anesthesia-induced sleep. That he be extibated, breathing tube removed. And that he begin feeding from a bottle. In that order.
But all three goals remain unaccomplished at today's end. Our little warrior's heart was in a worst place before the surgery than it was the last big surgery (at day 9 of life). I suppose we expected him to recover in a similar way to that procedure... wake up hours after surgery, be able to be held the following day, no breathing tube required after a few hours, etc. But that has not been the case, and we must be patient!!! (Patience is indeed a virtue, but it is not exactly genetically inherited on my side!)
So, those three goals are shifted to tomorrow. And maybe even the next. And, you know, it's OK. Because when Duncan is 17 years old it will make no difference whether Oz, his current respiratory technician, takes out that breathing tube on the 18th of October 2007, or the 19th. It was helpful to gain this kind of perspective from... guess who... you got it...Dr. G himself, yet again, who this morning stopped by to express how well Duncan is doing from the heart-repair perspective. The echo and EKG checked out great. His heart squeeze function has improved as expected. So, he was extremely positive. It helps to know that the primary goal has been achieved, now we just need to, as aforementioned, be patient. His little body needs time to heal. And, quite frankly, I shouldn't care how the pace of our tortoise during the race. As long as his heart is pumping well as he does.
Sarah, the dear nurse who has been working the day shifts with Duncan, will end her string of shifts tomorrow. It has been wonderful to have the same, competent, upbeat (but not too upbeat) gal lovin on our guy for several days in a row. There's just something comforting about her swiftly approaching me when Scott and I returned from a re spit at home today to proudly boast, "Feel his hands and feet now... you're never gonna believe how much better they are (previously we were frustrated at how cold they felt, the blood pressure not seeming to get good blood to the extremities)!" She had "experimented" with some Tylenol to bring down a low-grade temperature he had had. And it worked in decreasing the work the body was doing to balance out his temp and allowing it to circulate (more) properly. I am probably not explaining the details of why the Tylenol helped very well, but you get the gist of the story. Bottom line (again, not something I'm good at): Sarah is an angel who cares. She was so eager and excited for us to return so she could tell us the good news.
Our virtual friends, with whom we have only dialogued by internet/phone, have a son named Brian with HLHS and is undergoing "the Big One" tomorrow. Please pray for Brian and his family, Aaron and Tracy Zuber. They will be in that ole familiar family waiting room tomorrow for 9 hours biting their fingernails. I hope to visit with them for a short while, maybe in person for the first time!
Grandmom and Grandad have been saints (I'm running out of titles for all the special people in our lives: saints, angels...). Jackson entertained them all day with his grins and tongue clicks. This is a new trick, like he is discovering his tongue for the first time. He gifted Grandmom a pumpkin pie colored explosion after 11 days of refusing to clean his bowels (not that I was counting). Glad she got that diaper change and not me. Grandad, meanwhile, has located the nearest hardware store and recauked our shower, cleaned out the dryer tubing, serviced our humidifier in basement, and looks to have several more projects on the list for tomorrow. I asked him what else he planned to do with some reservation (intended to be received as a get-off-the-hook card, so he wouldn't feel he HAD to be our resident handyman), and he responded (receiving it differently) with "Why? You afraid I'm charging by the hour?" I'd be a bit afraid to see the bill left on my counter if the GGs' babysitting and contracting services were actually billed. Holy Macaroni, we'd be in trouble.
Did I mentioned Ricci and Diane spent time at the hospital while we napped at home? And did I mention Nancy dropped off fantastic meatloaf and potatoes, which we gobbled up for dinner? And did I mention the Jon and Kara from church provided the meal the night before? Angels, saints, hands of God... whatever you want to call everybody who loves us, they're amazing.
So that's how we feel: eager onlookers anxious for more improvements sooner. We had three goals for Duncan today. That he be strong enough to wake up from his anesthesia-induced sleep. That he be extibated, breathing tube removed. And that he begin feeding from a bottle. In that order.
But all three goals remain unaccomplished at today's end. Our little warrior's heart was in a worst place before the surgery than it was the last big surgery (at day 9 of life). I suppose we expected him to recover in a similar way to that procedure... wake up hours after surgery, be able to be held the following day, no breathing tube required after a few hours, etc. But that has not been the case, and we must be patient!!! (Patience is indeed a virtue, but it is not exactly genetically inherited on my side!)
So, those three goals are shifted to tomorrow. And maybe even the next. And, you know, it's OK. Because when Duncan is 17 years old it will make no difference whether Oz, his current respiratory technician, takes out that breathing tube on the 18th of October 2007, or the 19th. It was helpful to gain this kind of perspective from... guess who... you got it...Dr. G himself, yet again, who this morning stopped by to express how well Duncan is doing from the heart-repair perspective. The echo and EKG checked out great. His heart squeeze function has improved as expected. So, he was extremely positive. It helps to know that the primary goal has been achieved, now we just need to, as aforementioned, be patient. His little body needs time to heal. And, quite frankly, I shouldn't care how the pace of our tortoise during the race. As long as his heart is pumping well as he does.
Sarah, the dear nurse who has been working the day shifts with Duncan, will end her string of shifts tomorrow. It has been wonderful to have the same, competent, upbeat (but not too upbeat) gal lovin on our guy for several days in a row. There's just something comforting about her swiftly approaching me when Scott and I returned from a re spit at home today to proudly boast, "Feel his hands and feet now... you're never gonna believe how much better they are (previously we were frustrated at how cold they felt, the blood pressure not seeming to get good blood to the extremities)!" She had "experimented" with some Tylenol to bring down a low-grade temperature he had had. And it worked in decreasing the work the body was doing to balance out his temp and allowing it to circulate (more) properly. I am probably not explaining the details of why the Tylenol helped very well, but you get the gist of the story. Bottom line (again, not something I'm good at): Sarah is an angel who cares. She was so eager and excited for us to return so she could tell us the good news.
Our virtual friends, with whom we have only dialogued by internet/phone, have a son named Brian with HLHS and is undergoing "the Big One" tomorrow. Please pray for Brian and his family, Aaron and Tracy Zuber. They will be in that ole familiar family waiting room tomorrow for 9 hours biting their fingernails. I hope to visit with them for a short while, maybe in person for the first time!
Grandmom and Grandad have been saints (I'm running out of titles for all the special people in our lives: saints, angels...). Jackson entertained them all day with his grins and tongue clicks. This is a new trick, like he is discovering his tongue for the first time. He gifted Grandmom a pumpkin pie colored explosion after 11 days of refusing to clean his bowels (not that I was counting). Glad she got that diaper change and not me. Grandad, meanwhile, has located the nearest hardware store and recauked our shower, cleaned out the dryer tubing, serviced our humidifier in basement, and looks to have several more projects on the list for tomorrow. I asked him what else he planned to do with some reservation (intended to be received as a get-off-the-hook card, so he wouldn't feel he HAD to be our resident handyman), and he responded (receiving it differently) with "Why? You afraid I'm charging by the hour?" I'd be a bit afraid to see the bill left on my counter if the GGs' babysitting and contracting services were actually billed. Holy Macaroni, we'd be in trouble.
Did I mentioned Ricci and Diane spent time at the hospital while we napped at home? And did I mention Nancy dropped off fantastic meatloaf and potatoes, which we gobbled up for dinner? And did I mention the Jon and Kara from church provided the meal the night before? Angels, saints, hands of God... whatever you want to call everybody who loves us, they're amazing.
Wednesday, October 17, 2007
He is fine
I've learned, in my history of longwinded stories, to start with the bottom line. And the bottom line is that Duncan is fine.
But I can say with certainty that last night was definitely the most scared I have ever been. And I think Scott would agree the same was true for him. We headed to bed about half-way through the Indian's game, eager to have a night of uninterrupted sleep (Jackson staying at Gma and Poppy's). Right before hitting the pillow for good, we wanted to get a routine update from Duncan's nurse. When we called and asked for her, they routed us directly to the nurse practioner... I knew something was up at that moment. She explained that in the previous 45 minutes Duncan had experienced unusual eye activity and erratic body movement. And that his blood pressure and heart rate dropped dramatically at that same time. They were in the process of getting him stablized and would then cart him to get a CT scan to check for any signal that the brain endured stress (at this time the thought was that he had a seizure).
We went into panic mode and got ourselves down I-315 as fast as that little Jetta would drive. We ran all the way from the parking lot to his room to find Duncan progressively moving towards more stability. His heightened need for intensive care was winding down (and you can evaluate this by the number of care providers in the room like ants working in an ant hill)...he had been placed under anesthesia and was on a breathing tube. His vitals were looking better.
So they checked his brain by doing the CT scan. Looked OK (whew). They checked his heart by doing another echo. The heart function had decreased since the one done on Monday - one pretty strong explanation for the strange behavior. The blood work drawn and temperatures taken indicated there doesn't seem to be a virus, fever, or infection that would explain his "sick" behavior. At this point, we are led to believe that Duncan did not, in fact, have a seizure. But that instead the poor cardiac function manifested itself and was taking its toll on other systems in his body. [For those true heart "junkies" who enjoy the full medical explanation, I will detail: his poor heart squeeze function, they believe, is resulting from the heart not getting "fed" enough blood through the coronary arteries. This is happening, they think, because the aortic arch which takes oxygenated blood backwards to the heart - and to the top half of the body- had progressively narrowed (even with the stint they placed a few weeks back to remedy the narrowing, there had persisted to be "ingrowth" narrowing it further). So that restricted spot was preventing the heart from being "happy" - aka, getting enough oxygenated blood to feed it. Thus the poor cardiac function/heart squeeze in general]
After all of this information was obtained (about 3:00am), Scott and I took a snoozer in the hospitality room here at the hospital. We greeted Dr. G earling in the morning at which point he explained that he would not be doing the "Big One" today. That kind of surgery (8-9 hours remember) requires that all the cards be stacked in Duncan's favor. He did NOT feel comfortable placing his body under that much stress, given his instability the night before. So, he explained the anatomy of another, shorter procedure which still involved opening his chest. But this would only take 2 hours and would place a shunt to bipass that restricted spot, allowing his heart to be "happy" a little while longer; 4-6 weeks longer, to be exact, if all things go well. At that point (Duncan will be about 6 months old, which is the desired age of the biggy anyway), Duncan will undergo the big surgery that had initially been planned for today.
So Dr. G greeted us with a thumbs up after the surgery this morning. The shunt was placed and everything went as it should have. He has returned to his room in the cardiac ICU and is stable. He will remain asleep the rest of today and will continue to get oxygen support through tomorrow. We are glad to have him in our viewing again.
We are exhausted, but fine. Becky Smith, Craig Sutherland, and Amy Avery were with us over the course of time we were in the waiting room. We feel very loved by all of you. Thank you again and again for the ways you life little Duncan up. He knows!
But I can say with certainty that last night was definitely the most scared I have ever been. And I think Scott would agree the same was true for him. We headed to bed about half-way through the Indian's game, eager to have a night of uninterrupted sleep (Jackson staying at Gma and Poppy's). Right before hitting the pillow for good, we wanted to get a routine update from Duncan's nurse. When we called and asked for her, they routed us directly to the nurse practioner... I knew something was up at that moment. She explained that in the previous 45 minutes Duncan had experienced unusual eye activity and erratic body movement. And that his blood pressure and heart rate dropped dramatically at that same time. They were in the process of getting him stablized and would then cart him to get a CT scan to check for any signal that the brain endured stress (at this time the thought was that he had a seizure).
We went into panic mode and got ourselves down I-315 as fast as that little Jetta would drive. We ran all the way from the parking lot to his room to find Duncan progressively moving towards more stability. His heightened need for intensive care was winding down (and you can evaluate this by the number of care providers in the room like ants working in an ant hill)...he had been placed under anesthesia and was on a breathing tube. His vitals were looking better.
So they checked his brain by doing the CT scan. Looked OK (whew). They checked his heart by doing another echo. The heart function had decreased since the one done on Monday - one pretty strong explanation for the strange behavior. The blood work drawn and temperatures taken indicated there doesn't seem to be a virus, fever, or infection that would explain his "sick" behavior. At this point, we are led to believe that Duncan did not, in fact, have a seizure. But that instead the poor cardiac function manifested itself and was taking its toll on other systems in his body. [For those true heart "junkies" who enjoy the full medical explanation, I will detail: his poor heart squeeze function, they believe, is resulting from the heart not getting "fed" enough blood through the coronary arteries. This is happening, they think, because the aortic arch which takes oxygenated blood backwards to the heart - and to the top half of the body- had progressively narrowed (even with the stint they placed a few weeks back to remedy the narrowing, there had persisted to be "ingrowth" narrowing it further). So that restricted spot was preventing the heart from being "happy" - aka, getting enough oxygenated blood to feed it. Thus the poor cardiac function/heart squeeze in general]
After all of this information was obtained (about 3:00am), Scott and I took a snoozer in the hospitality room here at the hospital. We greeted Dr. G earling in the morning at which point he explained that he would not be doing the "Big One" today. That kind of surgery (8-9 hours remember) requires that all the cards be stacked in Duncan's favor. He did NOT feel comfortable placing his body under that much stress, given his instability the night before. So, he explained the anatomy of another, shorter procedure which still involved opening his chest. But this would only take 2 hours and would place a shunt to bipass that restricted spot, allowing his heart to be "happy" a little while longer; 4-6 weeks longer, to be exact, if all things go well. At that point (Duncan will be about 6 months old, which is the desired age of the biggy anyway), Duncan will undergo the big surgery that had initially been planned for today.
So Dr. G greeted us with a thumbs up after the surgery this morning. The shunt was placed and everything went as it should have. He has returned to his room in the cardiac ICU and is stable. He will remain asleep the rest of today and will continue to get oxygen support through tomorrow. We are glad to have him in our viewing again.
We are exhausted, but fine. Becky Smith, Craig Sutherland, and Amy Avery were with us over the course of time we were in the waiting room. We feel very loved by all of you. Thank you again and again for the ways you life little Duncan up. He knows!
Tuesday, October 16, 2007
In a Good Place
That's where we are right now, thanks be to God!
We spent the majority of the day with Duncan today (dear Nancy filled in the gaps early in the morning and later in the afternoon; dear Ricci and Diane filled in later in the evening). Although there were moments when Duncan had to experience unpleasant pokes and prods (drawing blood from the heal, administering an IV, etc), he was largely in dream land...the poor little guy is just tuckered out. But I find no troubles in rocking a peaceful, tuckered out little guy for several hours straight!
The experience that brought us most peace was our conversation with Dr. G, the surgeon himself. The man has a way of offering instant serenity to a room when he enters it. He spent a long period of time expressing his thoughts about the events leading up to now in Duncan's health, reassuring that our observations from home were right on, and painting a picture for how tomorrow will go so we are prepared. We have both the utmost respect and the utmost confidence in him both as a surgeon and as a caring, loving, faithful spirit. Get what he had to say when Scott asked curiously, "So I am intrigued by what goes through your head tonight, the night before an 8-9 hour surgery. What are you thinking?" :
To which Dr. G responded (paraphrased): "When I was younger, I dreamed of being a downhill ski racer. In my experience in those days, when you were preparing for the race itself you were not permitted to test run the course. But they let you explore on the perimeter to get an idea of what the course was like. Then, I trained the night before by visualizing every detail of how the race would go on that course. That's what helped me train for what will happen tomorrow with Duncan. Tonight I will run the surgery through my mind 10 or 15 times, going down every scenerio's path, good and bad, and visualizing what I will do in each case. I visualize down to the detail of him being rolled in the operating room to him being rolled out."
I tear up just by giving this account. How humbling to think that this man is at this very moment probably in deep concentration over my son's heart and that the time he is spending right now will result in the success of Duncan's wellbeing. I want to meet his family, give them all big hugs and say, (to his children) "Thanks for being patient when you needed help with your homework tonight so Dad could be our hero." (to his wife) "Thanks for doing the dishes alone and watching the Indians game alone tonight so your husband could be our hero." It is hard to explain how it feels to have our family benefiting from the drive, dedication, and care of an individual we met 7 months ago.
So in your prayers, include one of special thanks that we are blessed enough to have Dr. G in our court.
Meanwhile, Jackson, has been in the caring and competent hands of Lynette and Henry all day. He will continue to be in those hands all evening and all day tomorrow as well. What saints they are!
Thanks to everyone for everything. We think we are ready to go. A good night's rest is ahead and a full day tomorrow. We will send news as soon as we know it.
We spent the majority of the day with Duncan today (dear Nancy filled in the gaps early in the morning and later in the afternoon; dear Ricci and Diane filled in later in the evening). Although there were moments when Duncan had to experience unpleasant pokes and prods (drawing blood from the heal, administering an IV, etc), he was largely in dream land...the poor little guy is just tuckered out. But I find no troubles in rocking a peaceful, tuckered out little guy for several hours straight!
The experience that brought us most peace was our conversation with Dr. G, the surgeon himself. The man has a way of offering instant serenity to a room when he enters it. He spent a long period of time expressing his thoughts about the events leading up to now in Duncan's health, reassuring that our observations from home were right on, and painting a picture for how tomorrow will go so we are prepared. We have both the utmost respect and the utmost confidence in him both as a surgeon and as a caring, loving, faithful spirit. Get what he had to say when Scott asked curiously, "So I am intrigued by what goes through your head tonight, the night before an 8-9 hour surgery. What are you thinking?" :
To which Dr. G responded (paraphrased): "When I was younger, I dreamed of being a downhill ski racer. In my experience in those days, when you were preparing for the race itself you were not permitted to test run the course. But they let you explore on the perimeter to get an idea of what the course was like. Then, I trained the night before by visualizing every detail of how the race would go on that course. That's what helped me train for what will happen tomorrow with Duncan. Tonight I will run the surgery through my mind 10 or 15 times, going down every scenerio's path, good and bad, and visualizing what I will do in each case. I visualize down to the detail of him being rolled in the operating room to him being rolled out."
I tear up just by giving this account. How humbling to think that this man is at this very moment probably in deep concentration over my son's heart and that the time he is spending right now will result in the success of Duncan's wellbeing. I want to meet his family, give them all big hugs and say, (to his children) "Thanks for being patient when you needed help with your homework tonight so Dad could be our hero." (to his wife) "Thanks for doing the dishes alone and watching the Indians game alone tonight so your husband could be our hero." It is hard to explain how it feels to have our family benefiting from the drive, dedication, and care of an individual we met 7 months ago.
So in your prayers, include one of special thanks that we are blessed enough to have Dr. G in our court.
Meanwhile, Jackson, has been in the caring and competent hands of Lynette and Henry all day. He will continue to be in those hands all evening and all day tomorrow as well. What saints they are!
Thanks to everyone for everything. We think we are ready to go. A good night's rest is ahead and a full day tomorrow. We will send news as soon as we know it.
Monday, October 15, 2007
Wednesday it is
What a day.
After having posted this early afternoon's post, I am feeling SO MUCH more confident that we did the right thing this morning by bringing Duncan in. When I first entered the Cardiac ICU, where Duncan is right now, I hunted down Dr. Cua. He informed me that after some more discussion with Dr. G, they have decided to move the surgery to THIS WEDNESDAY. He will clearly be staying at the hospital till then. They saw no merit in waiting, given the feeding problems, so Wed it is. We were caught a little off guard by this news! So soon.
Duncan has continued to decline with feeds while at the hospital. Basically, he has held VERY little down today. At about 3:00, it was decided to transfer his bottle feeding (which was not going well - he just wouldn't EAT or else he'd fall asleep) to the tube feeding (which enters through the nose). The process of getting that stinkin tube inserted properly was not a fun one... the same NG tube was used when he was hospitalized right after birth, but Duncan is a little more vocal about discomfort at 4 1/2 months than he was at 12 days. In fact, everything is harder. It's harder to leave him in that hospital room with some [very caring] stranger. It's harder to know that he is more consciously aware of the unfamiliarity of that place. It's harder to think that when we're not there, he may just be laying awake looking at thin air. And - it's hardEST to watch him experience pain or discomfort.
Anyway, the milk was administered through the NG tube and he coughed and gagged through the whole process. Then, he gagged off and on for another half hour, inbetween exhaust-induced attempts to nap. I just knew something was not quite right. And, sure enough, he proceeded to vomit it all up, this time thicker and more mucousy. So now we have moved to continuous feeds, to allow his tummy to digest the milk little at a time. We're not sure if it is a gag reflux that is causing the vomiting or a symptom of over-exhaustion from how hard his heart is having to work.
All I know is that we are glad he is there. We are glad the surgery is sooner than later. And we are glad it will soon be over.
Keep us in your thoughts and prayers....as always!
After having posted this early afternoon's post, I am feeling SO MUCH more confident that we did the right thing this morning by bringing Duncan in. When I first entered the Cardiac ICU, where Duncan is right now, I hunted down Dr. Cua. He informed me that after some more discussion with Dr. G, they have decided to move the surgery to THIS WEDNESDAY. He will clearly be staying at the hospital till then. They saw no merit in waiting, given the feeding problems, so Wed it is. We were caught a little off guard by this news! So soon.
Duncan has continued to decline with feeds while at the hospital. Basically, he has held VERY little down today. At about 3:00, it was decided to transfer his bottle feeding (which was not going well - he just wouldn't EAT or else he'd fall asleep) to the tube feeding (which enters through the nose). The process of getting that stinkin tube inserted properly was not a fun one... the same NG tube was used when he was hospitalized right after birth, but Duncan is a little more vocal about discomfort at 4 1/2 months than he was at 12 days. In fact, everything is harder. It's harder to leave him in that hospital room with some [very caring] stranger. It's harder to know that he is more consciously aware of the unfamiliarity of that place. It's harder to think that when we're not there, he may just be laying awake looking at thin air. And - it's hardEST to watch him experience pain or discomfort.
Anyway, the milk was administered through the NG tube and he coughed and gagged through the whole process. Then, he gagged off and on for another half hour, inbetween exhaust-induced attempts to nap. I just knew something was not quite right. And, sure enough, he proceeded to vomit it all up, this time thicker and more mucousy. So now we have moved to continuous feeds, to allow his tummy to digest the milk little at a time. We're not sure if it is a gag reflux that is causing the vomiting or a symptom of over-exhaustion from how hard his heart is having to work.
All I know is that we are glad he is there. We are glad the surgery is sooner than later. And we are glad it will soon be over.
Keep us in your thoughts and prayers....as always!
The Newest of the Newest News
Our appointment on Friday revealed that Duncan's aortic arch looked very similar as the week before. In addition, however, the heart squeeze function is a little bit weaker. Dr. Cua was not alarmed, but - again - encouraged us to be very observant of change in Duncan's behavior at home.
This weekend he was a bit difficult. Mainly, the issue was with feeding (what's new!?). Our goal for every feed is 2-3 ounces. Whereas typically we get closer to 3 ounces than 2, the past two days it has been rough to get down the minimum: 2. Furthermore, Duncan has made it a habit of vomiting much, if not all, of what went down in the first place. What took the cake was when he ate poorly before going to bed last night and was still sleeping nearly 9 hours later. We woke him to feed him, and he act disinterested (when he shoulda been STARVED). Then, vomited what little went down.
So, we made the call to the Heart Center early this morning and, as expected, were instructed to come in for another echo and EKG. Although the anatomy of the heart has not changed much from Friday, Dr. Cua said that his feeding issues are of concern. What we want to avoid is dehydration and/or losing weight and becoming weak before the surgery.
Duncan was admited right around noon and will be there overnight for observation (they will continue to try feeding orally... if continues to be a problem, they will tube feed him instead). It could be that he stays until the surgery itself (which also has the possibility of moving closer) or he could be sent home tomorrow. We'll see.
At first we thought we may have been overreacting. But our cardiologist assured us otherwise. Furthermore, Duncan puked (and this is not just a regular baby spit up!) again in the Heart Clinic in Dr. Cua's presence, so it validated he needed to be watched over.
Lynette is on her way here to the house to watch Jackson while I go to the hospital to visit Duncan. Scott was the one who traveled to the hospital this morning and went through the whole routine.
We hope we did the right thing. It is so hard not having him at home, and knowing that if he stays until the surgery, he could be away from home for a total of a month or longer. But better he is guaranteed nourishment there than to be fretting over every feeding here.
This weekend he was a bit difficult. Mainly, the issue was with feeding (what's new!?). Our goal for every feed is 2-3 ounces. Whereas typically we get closer to 3 ounces than 2, the past two days it has been rough to get down the minimum: 2. Furthermore, Duncan has made it a habit of vomiting much, if not all, of what went down in the first place. What took the cake was when he ate poorly before going to bed last night and was still sleeping nearly 9 hours later. We woke him to feed him, and he act disinterested (when he shoulda been STARVED). Then, vomited what little went down.
So, we made the call to the Heart Center early this morning and, as expected, were instructed to come in for another echo and EKG. Although the anatomy of the heart has not changed much from Friday, Dr. Cua said that his feeding issues are of concern. What we want to avoid is dehydration and/or losing weight and becoming weak before the surgery.
Duncan was admited right around noon and will be there overnight for observation (they will continue to try feeding orally... if continues to be a problem, they will tube feed him instead). It could be that he stays until the surgery itself (which also has the possibility of moving closer) or he could be sent home tomorrow. We'll see.
At first we thought we may have been overreacting. But our cardiologist assured us otherwise. Furthermore, Duncan puked (and this is not just a regular baby spit up!) again in the Heart Clinic in Dr. Cua's presence, so it validated he needed to be watched over.
Lynette is on her way here to the house to watch Jackson while I go to the hospital to visit Duncan. Scott was the one who traveled to the hospital this morning and went through the whole routine.
We hope we did the right thing. It is so hard not having him at home, and knowing that if he stays until the surgery, he could be away from home for a total of a month or longer. But better he is guaranteed nourishment there than to be fretting over every feeding here.
Wednesday, October 10, 2007
The "BIG" One
Yesterday afternoon I received a phone call from Dr. Cua, Duncan's cardiologist. He and the heart surgeon had had a conversation about the echo and MRI from last Friday. The conclusion they drew was to move forward with scheduling the 2nd stage of the Hybrid Procedure. By most families, this is called "The Big One," because it is the most intensive, drawn out, and risky. Althought the success rate is still in the high 80s, it - understandably - makes us all nervous.
The option to keep this surgery posted for further in NovemberDecember by intervening with a cath was decided to not be worth the benefits it offered. Another "bandaid" to keep Duncan's heart situation safe for a while longer would have only made the big surgery more complicated. After weighing the pros and cons, both Dr. Cua and Dr. G (surgeon) recommended that the surgery be on Monday, Oct. 22. NOT FAR AWAY! We will be keeping a close eye on Duncan's behavior between now and then. If we're noticing signs of stress to the heart, it could be that the surgery will need to be bumped even closer.
Thanks to everyone for passing this along to your church prayer chains and other families who are interested. We are clearly made very nervous by the reality of a DATE planned ahead, but also relieved that Duncan's days of being medically REALLY fragile will eventually be a thing of the past.
Love and thanks to everyone.
The option to keep this surgery posted for further in NovemberDecember by intervening with a cath was decided to not be worth the benefits it offered. Another "bandaid" to keep Duncan's heart situation safe for a while longer would have only made the big surgery more complicated. After weighing the pros and cons, both Dr. Cua and Dr. G (surgeon) recommended that the surgery be on Monday, Oct. 22. NOT FAR AWAY! We will be keeping a close eye on Duncan's behavior between now and then. If we're noticing signs of stress to the heart, it could be that the surgery will need to be bumped even closer.
Thanks to everyone for passing this along to your church prayer chains and other families who are interested. We are clearly made very nervous by the reality of a DATE planned ahead, but also relieved that Duncan's days of being medically REALLY fragile will eventually be a thing of the past.
Love and thanks to everyone.
Monday, October 8, 2007
Intervention vs. Surgery
Friday's cardiology appointment revealed that Duncan's aortic arch is still narrowing. This is the same area that had become restricted before, resulting in a cath and a stint being placed. It is continuing to be a problem. There are a couple possible outcomes.
1) The arch stays stable and does not continue to narrow. In this case, we'll just continue to keep a watchful eye on it until the 2nd surgery (which would be most desirable when Duncan hits the 12-13 lb mark. Currently he is a bit over 10 lbs.)
2) The arch continues to narrow. In this case, we are left with two options (and, clearly, we will be looking to our cardiologist and Duncan's surgeon to make the final say). Either we can do yet another cath (this would be his 3rd!), ballooning that area again, enlongated the time Duncan's heart can be safe until the 2nd surgery. Or, we can just opt to have the surgery moved up, despite the fact that he won't be the desired weight/age.
We learned that the success of the surgery itself is not what gets compromised by moving it forward. Instead, it is the recovery time and strength offered to Duncan by waiting for him to get bigger/older.
So, Dr. Cua wanted to see Duncan again in a week (instead of the typical 2-3 weeks inbetween appointments) to check in on whether our circumstance is more like #1 or #2. So this Friday will be big.
What we continue to observe at home is Duncan perspiring during feeds (you can tell he is working hard) and the typical difficulty in GETTING him to feed well. The latter is a test of patience, without question - especially when there's another little guy needing love with his teething temperment.
That's right, Jackson - we think - is starting to cut his first tooth. Signs? There is Jackson saliva ALL OVER our hardwood floors (i still don't get how people with carpet deal with babies), he attempts to put BOTH fists in his mouth at the same time, his happy-go-lucky self isn't so happy-go-lucky, and when I place my pinky against his gums, he acts like it's candy...
On to news about me. (I know, I know - B-O-R-I-N-G!). I have been having a rough couple weeks with icky fever-like symptoms off and on. I've taken a full 7 days off of running as a result (and I was RIGHT on track with my training before that...darn it!). I finally, with the encouragement of my nurse friend Theresa, caved in and went to the doctor, to find that I had a 103 degree temperature. Urine test checked out fine and now we are waiting on blood work. Yuck.
1) The arch stays stable and does not continue to narrow. In this case, we'll just continue to keep a watchful eye on it until the 2nd surgery (which would be most desirable when Duncan hits the 12-13 lb mark. Currently he is a bit over 10 lbs.)
2) The arch continues to narrow. In this case, we are left with two options (and, clearly, we will be looking to our cardiologist and Duncan's surgeon to make the final say). Either we can do yet another cath (this would be his 3rd!), ballooning that area again, enlongated the time Duncan's heart can be safe until the 2nd surgery. Or, we can just opt to have the surgery moved up, despite the fact that he won't be the desired weight/age.
We learned that the success of the surgery itself is not what gets compromised by moving it forward. Instead, it is the recovery time and strength offered to Duncan by waiting for him to get bigger/older.
So, Dr. Cua wanted to see Duncan again in a week (instead of the typical 2-3 weeks inbetween appointments) to check in on whether our circumstance is more like #1 or #2. So this Friday will be big.
What we continue to observe at home is Duncan perspiring during feeds (you can tell he is working hard) and the typical difficulty in GETTING him to feed well. The latter is a test of patience, without question - especially when there's another little guy needing love with his teething temperment.
That's right, Jackson - we think - is starting to cut his first tooth. Signs? There is Jackson saliva ALL OVER our hardwood floors (i still don't get how people with carpet deal with babies), he attempts to put BOTH fists in his mouth at the same time, his happy-go-lucky self isn't so happy-go-lucky, and when I place my pinky against his gums, he acts like it's candy...
On to news about me. (I know, I know - B-O-R-I-N-G!). I have been having a rough couple weeks with icky fever-like symptoms off and on. I've taken a full 7 days off of running as a result (and I was RIGHT on track with my training before that...darn it!). I finally, with the encouragement of my nurse friend Theresa, caved in and went to the doctor, to find that I had a 103 degree temperature. Urine test checked out fine and now we are waiting on blood work. Yuck.
Tuesday, October 2, 2007
Is red our color?
Check out the development of both boys:
JACKSON at 1, 2, 3, and now 4 months!
DUNCAN AT 1 , 2, 3, and now 4 months!
The big 4 month birthday was today! Yey!
JACKSON at 1, 2, 3, and now 4 months!
DUNCAN AT 1 , 2, 3, and now 4 months!
The big 4 month birthday was today! Yey!
Potty-trained already?
So my friend Cari visited the other day. When she observed the boys' hands in the position I most often see them in, she commented that they were signing! Apparently, when the thumb is tucked between the forefinger and middle finger, that's the sign for "bathroom."
So, I conclude that they are already in touch with their bowel and kidney functions. And are ready to go on the big boy potty.
A stretch?
And now for some other good pics:
Note the Air Jordans they are wearing in the car seat pic!
Look at Duncan all grins above!
Monday, October 1, 2007
The Weekend and Today's Appointment
We had a very nice visit with Grandmom and Grandad during their trip to Columbus for the Air Show this past weekend. They met up with Jack and Jan, buddies from Cleveland. We were able to steal some moments with them on Friday, when they first arrived in town, and for breakfast Sunday. The boys were shuffled around the table at breakfast, as you can imagine. It was wonderful for the boys to be with their GG's! Both Duncan and Jackson shared lots of grins.
What a sweet shot of GG and Duncan. I love it!
Jackson and GGdad
Jack, Jan, the GGs, Jackson and Duncan (look at Duncan with that hat on peering at Grandad!)
As for this morning's regular pediatrician appointment, the weights are: Jackson at 12 lbs 13 ozs (chunker!) and Duncan at nearly 10 lbs. Jackson falls within the 10th percentile for his age, not adjusting for his prematurity. Duncan is quite a bit below the target zone, but Dr. McClellan is pleased by both weights, considering their histories!
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