I've had big plans for updating the blog for the last month. It was on the "post-boards" list and I've got all sorts of posts started about Josh's baptism, our fall vacation, Christmas and just life in general. But I find myself back here tonight for the original reason the blog was started in the first place - to keep those who love us updated on the health of our sweet munchkin.
I mentioned in one of my lasts posts about our trip to Virginia that we had to take Josh to the ER there for a high fever. We were told that he had pneumonia because of an irregular area on his chest xray and he was started on some antibiotics. That encounter started a several month trend of one to two weeks of health followed by weeks of fever, wheezing and congestion. Everytime we'd take him to the pediatrician, they'd do an xray and say it looked like pneumonia. We tried changing antibiotics, steroid tapers and breathing treatments with temporary improvements. After the fourth occurrence just before Christmas, our pediatrician referred us to a pediatric pulmonologists who seemed unconvinced about the pneumonia. He thought Josh probably had asthma that was exacerbated by the standard toddler runny noses but he wanted to do a CT scan to rule out other lung malformations or interstitial diseases. Another few episodes of bad wheezing with some blue lips also bought us an faster than planned follow up with our cardiologist who also didn't seem concerned. However, he knew that kids with a history of venous problems can sometimes present with wheezing so he wanted to do another echocardiogram just to be safe and for kicks, since we we already scheduled for a Chest CT he had them add an angiogram to look at the vessels around J's heart. With instructions to wait for at least four weeks without any signs of infection to get the most accurate results, we set into wait until the end of February to have everything done. Well that was yesterday.
We were hoping and praying that asthma would be a quick and tidy diagnosis to make sense of the last few months but instead one of our worst fears was seen. The angiogram shows that the left pulmonary veins are likely completely occluded meaning for the non-medical folks that no oxygenated blood gets back to Josh's heart from his entire left lung. Even worse, it looks like it has been that way for a long time and they confirmed that by looking back at his echo from last March. With 20/20 hindsight they can't even identify the left veins on that scan. Our cardiologist says it may have even been this way since they day we brought him home. Essentially what it means with no exaggeration, is that he only has one functioning lung. Now that would explain why even the lightest cold seemed to always turn into something more. Unfortunately with the intubation and general anesthesia yesterday coupled with a runny nose the cycle has started again. We spent five hours in the ER last night with a baby unable to breathe comfortably with a fever and congestion and a chest xray that looks like - you guessed it - pneumonia. This latest infection is also going to put a delay into getting to another answer for what next. They will need to do a cardiac cathertization to look at the pressures in both the left and right veins and see how the obstruction is effecting the other delicate balances of pressure flows and see if there is any chance of saving the left side. Given how scarred and blocked the veins look and the fact that he's giving me four weeks to let my medical imagination run wild, I asked our cardiologist who I trust beyond words to summarize a best and a worst case scenario. For the best possibility, there might be some small flow through the left which will mean another heart surgery like we had before to try to save the left lung. Worst case is everything there is essentially dead and with the changes in flow will so significant that they will need to remove his left lung. Pretty much the only in between is that the problem isn't fixable but that surgery to remove the lung could be postponed for now. We are obviously devastated about all of this but the thought of our sweet, chatty baby losing his lung is just not comprehensible. We're trying to keep the perspective from our cardiologist that he's essentially been living on one lung for at least a year now and honestly you would really have no idea. We're even almost ready to make quips about how if this is how rambuctious he is with one lung we're not sure we could handle him having two. Almost.
So for now again we wait. Our cardiologist is going to a conference next week where he will see our surgeon from Michigan and they will confer about his situation. We're going to go on germ lockdown so they can get the best sense of his lungs at their healthiest state and plan for the cath in early April. And then we'll see.
Thursday, March 1, 2012
Monday, November 14, 2011
Who says Texans can't be born in Michigan
On Saturday night we tried a new neighborhood restaurant that serves burgers and Tex-mex. My expectations were not high but it was surprisingly passable as far as Mid-west Mexican food goes. Josh however loved the chips and salsa. While it wasn't really spicy it definitely had a kick to it and he ate almost half of the bowl. His Texas roots were definitely showing. We'll see how he fares with the "real" stuff when we're there later this week.
Monday, October 31, 2011
Trick or Treat
While he may be a little young to eat the candy, we knew J would love trick or treating this year since it basically centers around his favorite activity - taking stuff out of one bucket and putting it in another bucket. While it took several weeks of "practice" to convince him that the hood to the costume should stay on the chill in the air and the distraction of being outside probably helped.
Oh, no there's a lion on the loose
Good thing the lion tamer is here
We were all supposed to go to a Halloween party that had be canceled so we figured we'd get some use out of our costumes. A circus theme seemed the way to go and maybe it seemed a little less like we were using our child to troll for candy for us if we got into the holiday.
Josh loved walking up to the houses and picking something out of the buckets to put in his bag.
After hitting up about twelve houses it was getting dark and our lion was getting sleepy so we headed back to the den for a good night's sleep.
Oh, no there's a lion on the loose
We were all supposed to go to a Halloween party that had be canceled so we figured we'd get some use out of our costumes. A circus theme seemed the way to go and maybe it seemed a little less like we were using our child to troll for candy for us if we got into the holiday.
Months Fifteen and Sixteen
Another 2 months have gone by. Time flies but every day is so full.
Stats: 21.1 lbs at the pediatrician's last week, He's wearing mostly 12 month tops and we've graduated to mostly 6-12 month sized pants. If he grows much taller we're going to have some real issues because the 6-12 month pants are almost too short so we can't roll them at the waist anymore to help make them tighter. They are still way too big for him and we've started hunting for baby belts. Along those lines he's still in size 3 diapers thanks to a nonexistent butt and the tabs still almost overlap in the middle. He's still wearing his size 4 shoes but we're going to need to go up in the next few weeks.
Conversations: Well unfortunately his most favorite word for much of last month was of of the four letter starts with "s" ends with "t" variety. While we may not have the cleanest language we do try to be careful about what we say around him but I guess we need to be more careful. Obviously he doesn't know what it means so we'll call it his favorite sound because I think he likes the way his tongue feels against his teeth. He definitely draws it out with multiple syllables in his best redneck drawl - "She ee it". We're trying to "reroute" the word and have tried "See it", "Shoes" or "Sheep" with some success. He'll at least bring you shoes if they're around when he says it now. He'll sign now for "more" and "please" which have been good additions. His "all done" sign also has a new nuance because he'll use it when he's all done because all the food is gone but also when he's just done. Trying to figure out the difference has led to some wasted food but I think he's starting to get it. We've been trying to get him to sign drink for when he's thirsty but that doesn't seem to be taking. Wordwise, his favorite word is "nana" and the chorus of nana, nana, nana can usually be followed all the way into the pantry where he'll grab the first banana he sees. If you're not quick enough he'll even take a big bite out of it peel and all. His second favorite food is cheese and when he sees it he'll say "Cheee". Our favorite word has to be "yum-yum". He's always enjoyed eating and after every bite/sip he'll say "yum, yum, yum". Not sure where he picked that up but it's really cute. What's not so cute is the "Uh-oh" that prefaces every drop of food/cup/toy etc. We've been working on reinforcing the concept that it's not an "uh-oh" when you do it on purpose but so far we're not getting anywhere.
Accomplishments: He's steady enough with his walking now that we've been able to move the baby gates to only block the stairs. Of course with free run of the downstairs, he quickly figured out how to get into all the kitchen cabinets so another round of baby-proofing went into effect. He's not quite running yet since he doesn't really pick his knees up but he can scuttle pretty well. He loves to get going and will yell at you over his shoulder to chase him but you have to go really slow or you can try to lap him and get him on the next pass. He's not going to be winning any dance contests unless they're for "white boy dancing" but he does love to "dance" now if music plays from his toys or on the TV. This mostly consists of just swaying and flailing his arms around but he seems to enjoy it.
Attitude: We're like a broken record in this department - still happy and smiling at least 80% of them time. He has his basic cranky period every night between dinner and bedtime but with a little distraction or a good game of peekaboo all is right with the world. While he's always been overly friendly, I'm not sure I would say he's extra affectionate with hugs and kisses but that seems to be changing this month. Whether it's all the sick time or less nap time, he's been much more cuddly this month and we've been trying to soak up all the snuggles he'll give. He'll come hug us on the leg now and is always trying to hug the dogs and will lay his head down on your shoulder to rest when he's sleepy. If you ask for a kiss he'll lean his cheek into your face or will half way blow you a kiss. My favorite is at bedtime when he smiles up at you and sighs a very contented baby sigh.
Transitions/Milestones: We have been out and about a lot these last two months. To give Scott some time to take care of life stuff, he's been taking Josh to morning care at our church. We thought it was a great way to start socializing him with other kids and he seems to enjoy it. Everytime we go to pick him up he starts crying when he sees us. I guess they have better toys. We've also made weekend trips to Chicago, Ann Arbor and Richmond. While traveling with a squirmy toddler is a little more difficult than it was in his infant days with some careful planning around naptime and some Blue's Clues on the Ipad we made it all in one piece. While we were in Virginia we made our first and hopefully last trip to the ER when J woke up with a temperature of 106. Whether he had pneumonia or a virus it left us with a very sad baby. On the flip side of that for more than a week he just wanted to sleep and he is finally able to put himself to sleep at night. He'd been doing great for naps for the last two months but he still had trouble at night. Now we can read a book, snuggle and rock for 15 minutes or so and put him into bed with his books. He'll cry sometimes but nine times out of ten will fall asleep without any other help. All of this while dropping the bottle for good has been a much easier transition than we thought it would be. His excitement about the bottle was second only to his excitement about his pacifier but we just stopped offering it for drinks and bedtime and it's like he hardly noticed. We're find with him using the pacifier for awhile longer but lets cross our fingers that he takes that in stride as well.
Favorite Toys and Games: Boxes and buckets are still favorites this month for empyting and filling but the kleenex box was found to be even better. Luckily with all the colds and allergies going around between the three of us we have plenty of boxes to fall back on. Balls that he can "throw" and roll that can go in and out of the buckets are also increasing in popularity. While we were in Virginia he discovered Aunty Em's dancing Frankenstein from hallmark last year and had a blast watching it stagger around the floor. So once we were home I made a trip into hallmark for this year's version - the hokey pokey skeleton that flips in and out of his pumpkin. He loves pushing the button so much that the poor skeleton very rarely makes it all the way through his routine but sometimes he'll get distracted dancing and will let it run through. For other Halloween props we got a dancing broom at Grandin Road last year that cackles like a witch and spins around. If he has a safe distance he finds it highly entertaining but if it comes to close to him it's quite scary. Even if he is a little nervous about inanimate objects that suddenly move he has no fear for doing flips, climbing on and sliding off the furniture and games where you pretend you're going to drop him. When he gains another inch in height, I think we're going to go through another period of the constantly bruised forehead like he had when he started walking.
Things we love: We love watching his personality develop while things are still so simple to him. Little things like washing under his chin or playing peek a boo will set off fits of giggles that leave him gasping for breath. We're also loving that we finally ventured into our new basement to create a winter "babypalooza" of play space. Josh has loved having all the room to run around in and with some garage sale finds his play space is starting to rival the one at the church.
These months in pictures
Stats: 21.1 lbs at the pediatrician's last week, He's wearing mostly 12 month tops and we've graduated to mostly 6-12 month sized pants. If he grows much taller we're going to have some real issues because the 6-12 month pants are almost too short so we can't roll them at the waist anymore to help make them tighter. They are still way too big for him and we've started hunting for baby belts. Along those lines he's still in size 3 diapers thanks to a nonexistent butt and the tabs still almost overlap in the middle. He's still wearing his size 4 shoes but we're going to need to go up in the next few weeks.
Conversations: Well unfortunately his most favorite word for much of last month was of of the four letter starts with "s" ends with "t" variety. While we may not have the cleanest language we do try to be careful about what we say around him but I guess we need to be more careful. Obviously he doesn't know what it means so we'll call it his favorite sound because I think he likes the way his tongue feels against his teeth. He definitely draws it out with multiple syllables in his best redneck drawl - "She ee it". We're trying to "reroute" the word and have tried "See it", "Shoes" or "Sheep" with some success. He'll at least bring you shoes if they're around when he says it now. He'll sign now for "more" and "please" which have been good additions. His "all done" sign also has a new nuance because he'll use it when he's all done because all the food is gone but also when he's just done. Trying to figure out the difference has led to some wasted food but I think he's starting to get it. We've been trying to get him to sign drink for when he's thirsty but that doesn't seem to be taking. Wordwise, his favorite word is "nana" and the chorus of nana, nana, nana can usually be followed all the way into the pantry where he'll grab the first banana he sees. If you're not quick enough he'll even take a big bite out of it peel and all. His second favorite food is cheese and when he sees it he'll say "Cheee". Our favorite word has to be "yum-yum". He's always enjoyed eating and after every bite/sip he'll say "yum, yum, yum". Not sure where he picked that up but it's really cute. What's not so cute is the "Uh-oh" that prefaces every drop of food/cup/toy etc. We've been working on reinforcing the concept that it's not an "uh-oh" when you do it on purpose but so far we're not getting anywhere.
Accomplishments: He's steady enough with his walking now that we've been able to move the baby gates to only block the stairs. Of course with free run of the downstairs, he quickly figured out how to get into all the kitchen cabinets so another round of baby-proofing went into effect. He's not quite running yet since he doesn't really pick his knees up but he can scuttle pretty well. He loves to get going and will yell at you over his shoulder to chase him but you have to go really slow or you can try to lap him and get him on the next pass. He's not going to be winning any dance contests unless they're for "white boy dancing" but he does love to "dance" now if music plays from his toys or on the TV. This mostly consists of just swaying and flailing his arms around but he seems to enjoy it.
Attitude: We're like a broken record in this department - still happy and smiling at least 80% of them time. He has his basic cranky period every night between dinner and bedtime but with a little distraction or a good game of peekaboo all is right with the world. While he's always been overly friendly, I'm not sure I would say he's extra affectionate with hugs and kisses but that seems to be changing this month. Whether it's all the sick time or less nap time, he's been much more cuddly this month and we've been trying to soak up all the snuggles he'll give. He'll come hug us on the leg now and is always trying to hug the dogs and will lay his head down on your shoulder to rest when he's sleepy. If you ask for a kiss he'll lean his cheek into your face or will half way blow you a kiss. My favorite is at bedtime when he smiles up at you and sighs a very contented baby sigh.
Transitions/Milestones: We have been out and about a lot these last two months. To give Scott some time to take care of life stuff, he's been taking Josh to morning care at our church. We thought it was a great way to start socializing him with other kids and he seems to enjoy it. Everytime we go to pick him up he starts crying when he sees us. I guess they have better toys. We've also made weekend trips to Chicago, Ann Arbor and Richmond. While traveling with a squirmy toddler is a little more difficult than it was in his infant days with some careful planning around naptime and some Blue's Clues on the Ipad we made it all in one piece. While we were in Virginia we made our first and hopefully last trip to the ER when J woke up with a temperature of 106. Whether he had pneumonia or a virus it left us with a very sad baby. On the flip side of that for more than a week he just wanted to sleep and he is finally able to put himself to sleep at night. He'd been doing great for naps for the last two months but he still had trouble at night. Now we can read a book, snuggle and rock for 15 minutes or so and put him into bed with his books. He'll cry sometimes but nine times out of ten will fall asleep without any other help. All of this while dropping the bottle for good has been a much easier transition than we thought it would be. His excitement about the bottle was second only to his excitement about his pacifier but we just stopped offering it for drinks and bedtime and it's like he hardly noticed. We're find with him using the pacifier for awhile longer but lets cross our fingers that he takes that in stride as well.
Favorite Toys and Games: Boxes and buckets are still favorites this month for empyting and filling but the kleenex box was found to be even better. Luckily with all the colds and allergies going around between the three of us we have plenty of boxes to fall back on. Balls that he can "throw" and roll that can go in and out of the buckets are also increasing in popularity. While we were in Virginia he discovered Aunty Em's dancing Frankenstein from hallmark last year and had a blast watching it stagger around the floor. So once we were home I made a trip into hallmark for this year's version - the hokey pokey skeleton that flips in and out of his pumpkin. He loves pushing the button so much that the poor skeleton very rarely makes it all the way through his routine but sometimes he'll get distracted dancing and will let it run through. For other Halloween props we got a dancing broom at Grandin Road last year that cackles like a witch and spins around. If he has a safe distance he finds it highly entertaining but if it comes to close to him it's quite scary. Even if he is a little nervous about inanimate objects that suddenly move he has no fear for doing flips, climbing on and sliding off the furniture and games where you pretend you're going to drop him. When he gains another inch in height, I think we're going to go through another period of the constantly bruised forehead like he had when he started walking.
Things we love: We love watching his personality develop while things are still so simple to him. Little things like washing under his chin or playing peek a boo will set off fits of giggles that leave him gasping for breath. We're also loving that we finally ventured into our new basement to create a winter "babypalooza" of play space. Josh has loved having all the room to run around in and with some garage sale finds his play space is starting to rival the one at the church.
These months in pictures
Sunday, October 30, 2011
Fall in Ohio
Given our excursions in Ann Arbor and Richmond we hadn't been too motivated (or free - I've been on call every weekend we've been home) to get out to the local fall festivities. But we did at least try a few weeks ago to go out for a pumpkin. Initially, J was not super excited about being contained in the backpack for the trip out to the pumpkin patch.
The tractor ride out there was a little more exciting
But running through the dust and dirt was the best part
Unfortunately more than 80% of the field pumpkins were rotten so that left us little hope for the rest lasting the two weeks until Halloween. So we left a little dirtier and empty handed. But at least there was the tractor ride back to the car to round out the trip.
But running through the dust and dirt was the best part
Thursday, October 27, 2011
Fall in Virginia
For our next trip we set out for Virginia to visit with Chris, Emily, Sam and Nate. Very early Saturday morning J woke up very cranky and a little warm but we just chalked it up to teething and being uncomfortable in the pack and play. After a dose of Ibuprofen he seemed a little flat but wasn't too sad looking so off we went for some apple picking in the mountains.
We stopped to check out the pumpkins too but we figured it would definitely put our checked bag over the weight limit so we didn't try to take one home.
While on the hayride, J seemed a bit down and he would not let go of the pacifier but since he's been teething so much we just added another dose of medicine.
Once we got to the vineyard he seemed back to his regular self and he had a great time running around in the grass while we had a gourmet picnic and some wine tasting.
Back in the car he passed out quickly and by the time we made it home he had a fever of 104. Well we knew then that it wasn't teething and despite constant meds by 2am his temperature was up to 106.4. We were lucky he didn't have a febrile seizure but he was shaking and lethargic and just very sad. So, while we made it 15 and half months without an extra call to our pediatrician or hospital visits, now we were off in the middle of the night for our first ER visit. Luckily Aunty Em knew right where to take him and with some more tylenol and IV fluids he seemed to feel better. His labs didn't look bad but they thought he might have pneumonia on his chest xray even though he had no cough or other symptoms. They gave him one dose of IV antibiotics and were leaning towards admitting him for observation but since we had a flight to catch the next day and I could watch him closely, they let us go home. Strangly by that afternoon he seemed to feel fine again and we were even able to enjoy some play room time with Sam and Nate and make a trip to the park. The only remnant he had of being sick is the hemangioma birthmark on his left cheek that flares when he is stressed or has fevers.
The fevers came back that night but he did great at the airport and on the ride home. A visit to our pediatrician and some new labs and xrays showed that their pneumonia diagnosis was likely an overcall and more than likely he had some sort of virus. After another 24 hours his fever finally stayed away and although he was extra sleepy for the rest of the week his happy personality returned.
We stopped to check out the pumpkins too but we figured it would definitely put our checked bag over the weight limit so we didn't try to take one home.
While on the hayride, J seemed a bit down and he would not let go of the pacifier but since he's been teething so much we just added another dose of medicine.
Once we got to the vineyard he seemed back to his regular self and he had a great time running around in the grass while we had a gourmet picnic and some wine tasting.
Back in the car he passed out quickly and by the time we made it home he had a fever of 104. Well we knew then that it wasn't teething and despite constant meds by 2am his temperature was up to 106.4. We were lucky he didn't have a febrile seizure but he was shaking and lethargic and just very sad. So, while we made it 15 and half months without an extra call to our pediatrician or hospital visits, now we were off in the middle of the night for our first ER visit. Luckily Aunty Em knew right where to take him and with some more tylenol and IV fluids he seemed to feel better. His labs didn't look bad but they thought he might have pneumonia on his chest xray even though he had no cough or other symptoms. They gave him one dose of IV antibiotics and were leaning towards admitting him for observation but since we had a flight to catch the next day and I could watch him closely, they let us go home. Strangly by that afternoon he seemed to feel fine again and we were even able to enjoy some play room time with Sam and Nate and make a trip to the park. The only remnant he had of being sick is the hemangioma birthmark on his left cheek that flares when he is stressed or has fevers.
The fevers came back that night but he did great at the airport and on the ride home. A visit to our pediatrician and some new labs and xrays showed that their pneumonia diagnosis was likely an overcall and more than likely he had some sort of virus. After another 24 hours his fever finally stayed away and although he was extra sleepy for the rest of the week his happy personality returned.
Tuesday, October 25, 2011
Fall in Michigan
Including our trip to Chicago we've been on the road quite a bit in the last month. Early in October we headed up to Ann Arbor to check in on some things with our rental house there and as luck would have it we were able to catch up with some old friends who were also in town.
We got a later start than we wanted but J took it in stride and eventually fell asleep in the back seat. Then he was the life of the party in our hotel room until after midnight. Maybe we should feel bad about keeping him up so late but he was having a great time playing "trot to Boston" with Jenna and running around the room exploring all the new cabinets and places to hide things. Once the party was over, he was out like a light but even the black out curtains didn't keep in bed any later than normal the next day.
After a few runs to Home Depot and some maintenance at our old house we all set out for the fall festival at the orchard.
The petting zoo was a hit at first
But then the goat actually touched him and he wasn't so sure
So it was onto climb up the haybale mountain
It was a good time
After a "ride" on the tractor and then a real ride on an antique fire truck, we went on a hayride through the woods. Turns out a "car ride" at naptime leads to a nap no matter what the vehicle.
After a good hour snooze in the backpack it was snack time and J had his first taste of apple fritter.
It was also a hit.
We rounded out the day by having dinner with our former neighbors and had a great time catching up. We had planned to go to the children's museum on Sunday but J was up and at 'em before 6 so after brunch and a trip to the bookstore to get everyone some new U of M gear, he passed out in the car. So we took advantage and headed back to Ohio. While our trip was short, it was fun to show Josh his first "home" even if he was only there for about a half hour before we moved. All in all we had a great time back in our old stomping ground with good friends and we'll definitely have to go back soon so we can see everyone else.
We got a later start than we wanted but J took it in stride and eventually fell asleep in the back seat. Then he was the life of the party in our hotel room until after midnight. Maybe we should feel bad about keeping him up so late but he was having a great time playing "trot to Boston" with Jenna and running around the room exploring all the new cabinets and places to hide things. Once the party was over, he was out like a light but even the black out curtains didn't keep in bed any later than normal the next day.
After a few runs to Home Depot and some maintenance at our old house we all set out for the fall festival at the orchard.
The petting zoo was a hit at first
But then the goat actually touched him and he wasn't so sure
So it was onto climb up the haybale mountain
It was a good time
After a "ride" on the tractor and then a real ride on an antique fire truck, we went on a hayride through the woods. Turns out a "car ride" at naptime leads to a nap no matter what the vehicle.
After a good hour snooze in the backpack it was snack time and J had his first taste of apple fritter.
It was also a hit.
We rounded out the day by having dinner with our former neighbors and had a great time catching up. We had planned to go to the children's museum on Sunday but J was up and at 'em before 6 so after brunch and a trip to the bookstore to get everyone some new U of M gear, he passed out in the car. So we took advantage and headed back to Ohio. While our trip was short, it was fun to show Josh his first "home" even if he was only there for about a half hour before we moved. All in all we had a great time back in our old stomping ground with good friends and we'll definitely have to go back soon so we can see everyone else.
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