So February is a no-go for Clayton's Fontan. Yes, sorry to get you all emotionally worked up and then change the plan on you, but that's the way it is. After consulting with the surgery team at Stanford, they've decided against February because a) it's flu season, and b) they want Clayton to gain a little more weight (the story of his life). Guess who will be force fed all the holiday goodies this year? Rough life.
The plan is to see Clayton's Oklahoma cardiologist again in April, and we'll try to nail down a date at that time. I'm thinking it will be late summer, but that's just a guess at this point.
It's a bit of an emotional rollercoaster. Of course it's nice to put this off, but now again there is still so much unknown looming in the future. We're just praying for God's perfect timing in all this.
Tuesday, November 10, 2009
Thursday, November 5, 2009
Monday, November 2, 2009
February
...is the tenative month for Clayton's Fontan. I think I'll go throw up now.
At least February in Palo Alto will be much more pleasant than February in Oklahoma City. You can say that about practically every month of the year. This has to be the reason why people pay millions of dollars to live in tiny houses on tiny lots out there. No offense if you happen to live there or happen to have lived there in the past.
This is all I can say on this subject for now.
PS If you live near the bay area, visit(s) will be required!
At least February in Palo Alto will be much more pleasant than February in Oklahoma City. You can say that about practically every month of the year. This has to be the reason why people pay millions of dollars to live in tiny houses on tiny lots out there. No offense if you happen to live there or happen to have lived there in the past.
This is all I can say on this subject for now.
PS If you live near the bay area, visit(s) will be required!
Saturday, October 31, 2009
Our Failed Pumpkin Farm Attempt
Our church toddler group all met out at a local farm last Monday. Mom, Meghan, and Lizzie were visiting, so they tagged along too. This place was quite large and looked really cool. They had a wide variety of pumpkins, hay rides, corn maze, hay bale maze, tricycle races, petting zoo, and more. Unfortunately, the weather went from bad to worse, and about an hour in, most of us bailed.
1. Here's the lady who greeted us with a presentation all about pumpkins and gourds. How can I say this halfway nicely? Seriously, this woman was out in left field as she attempted to explain the word origin of pumpkin to a bunch of 3 to 5 year olds. She then described and named no less than 20 different types of pumpkins and squash to our group. She practically demanded audience participation, and not one of these kids had any idea what she was talking about. I don't think she had any toddler experience.
So this was our pumpkin patch experience. We will definitely try to go back next year because the place had serious potential for many hours of fun. We will, however, be going on a much less windy day.
1. Here's the lady who greeted us with a presentation all about pumpkins and gourds. How can I say this halfway nicely? Seriously, this woman was out in left field as she attempted to explain the word origin of pumpkin to a bunch of 3 to 5 year olds. She then described and named no less than 20 different types of pumpkins and squash to our group. She practically demanded audience participation, and not one of these kids had any idea what she was talking about. I don't think she had any toddler experience.
2. We finally moved outside where the winds were starting to pick up. I had packed somewhat thick jackets and hats. I felt prepared. Here's our pumpkin, Clayton.
3. Happy to pose at the "How tall this fall?" sign.
4. Happy to ride the tricyles around the little race track through the corn field. Here's Clayton's Nan lending a hand.
5. Starting to get pretty chilled in the hay maze. Now refusing to smile or even look at the camera. Mom feeling really bad she didn't pack mittens.
6. I usually keep two heavy blankets in the car for the boys in the winter. They can't wear big coats in their carseats, so this is how we keep warm. Somehow, Clayton's blanket had escaped the car, but luckily we had Eli's with us. Here's Eli trying to keep warm.
7. I thought surely a horse tire swing would cheer up my boy. No such luck. He was really getting cold. His circulation is so poor in the winter, and at this point I started to become a little concerned about his hands. From this point on, he had to keep his hands in his pockets.
8. We were about to call it quits when the nice farm folks fired up the hayride. We really debated, but we finally decided to give it a try. At least we'd all be snuggled together. This actually turned out to be the best part of our morning. We covered ourselves with the blanket and hay. Apparently animals are onto something when they nestle down in the hay in the cold. It was slightly warmer. As you can see from the picture, the winds were relentless. I have amazing hair in this picture. The children were a little happier at this point.
9. After the hayride we practically ran (as much as you can run with a double stroller on dirt) to the parking lot. I was sad about not having any pumpkin pictures, so I paused to get just one picture of the boys with these white pumpkins, but this was all they gave me. Clayton was not in a happy place by this time.
So this was our pumpkin patch experience. We will definitely try to go back next year because the place had serious potential for many hours of fun. We will, however, be going on a much less windy day.
Wednesday, October 28, 2009
Still Missing Preschool
I kept Clayton home from preschool again yesterday (two weeks now). I had intended to send him, but he woke up at 6am coughing terribly, and then he threw up four times before 8am. Clayton's gag reflex is soooo sensitive, so when he's been coughing a lot it's not uncommon for him to throw up. Either way, I decided he was still coughing too much to go to preschool and enough to warrant another trip to the pediatrician.
Apparently Clayton now has a sinus infection, possibly caused by all the congestion from the flu last week. We made another big trip to the pharmacy and then headed home. Clayton seems to be doing better today than yesterday. He's still hacking up a lung every now and then, but he's better overall. I really want him to get healthy once and for all. He's so sick of being sick. Hopefully he'll make it to school on Friday.
In the meantime my mom, sister, and niece have been visiting this week, and we've been trying to work in a little fun while they've been here. We went out to a local farm for a pumpkin patch on Monday, but we nearly froze to death, seriously. Oklahoma winds can be brutal. What few pictures we took will be posted later. Yesterday was a stay at home kind of day, due to the sick-o. Today we got a little shopping done. Who knows what we're doing tomorrow, probably just relaxing and letting the kids play together.
Apparently Clayton now has a sinus infection, possibly caused by all the congestion from the flu last week. We made another big trip to the pharmacy and then headed home. Clayton seems to be doing better today than yesterday. He's still hacking up a lung every now and then, but he's better overall. I really want him to get healthy once and for all. He's so sick of being sick. Hopefully he'll make it to school on Friday.
In the meantime my mom, sister, and niece have been visiting this week, and we've been trying to work in a little fun while they've been here. We went out to a local farm for a pumpkin patch on Monday, but we nearly froze to death, seriously. Oklahoma winds can be brutal. What few pictures we took will be posted later. Yesterday was a stay at home kind of day, due to the sick-o. Today we got a little shopping done. Who knows what we're doing tomorrow, probably just relaxing and letting the kids play together.
Saturday, October 24, 2009
Swine Flu Update
So, I think this is the lightest case of swine flu in the history of the virus. I can't explain it, but I've been telling everyone that the Lord has had mercy on me because I've been through a lot in my life, and I just would not be able to survive if Clayton became seriously ill with this virus.
When we were at the pediatrician last Tuesday, neither of us could assess how long Clayton had actually had the flu, as he'd had the runny nose for a month, but the fever last Friday led us to believe that was possibly the onset of the flu. That would mean that Clayton didn't start the Tamiflu until four days into the illness, and Tamiflu is most effective if started within about 48 hours of the onset of symptoms.
Long story short, maybe the Tamiflu has helped. Maybe he didn't really need it after all. I don't know, but what I do know is that besides putting himself down for a nap two days this week, this boy hasn't acted sick at all.
To make the light flu story even stranger, just the weekend before all this Eli and I ran fevers for about 48 hours with runny noses and coughing. I never thought it was the flu because you're supposed to feel bad, and we didn't feel great, but we didn't feel that bad either. Could we have had it? I don't know. Our cases seem pretty similar to Clayton's.
Enough rambling... the update:
1. Clayton has been fever free one week now.
2. Clayton still has a slightly runny nose (much improved) and a slightly junky cough, especially in the mornings after he's been laying down all night.
3. Clayton is still on the Tamiflu through Sunday evening.
4. After much debate and research, Clayton will still most likely get a second dose of the H1N1 vaccine, as he's had such a light case, there's the possibility he has not built enough immunity to make it through the season. This is assuming we can locate a second dose for him, which was difficult the first time around.
(His original dose was last week, so he was most likely infected before the vaccine had time to take effect, usually 10 to 14 days after the shot. Clayton has to have the inactivated virus because of his condition, so there is not a possibility of contracting the virus from the vaccine.)
Answers to other questions I've received:
1. Clayton was diagnosed in the pediatrician's office. There's a rapid swab test (about 15 to 20 minutes) a doctor's office can run that tests for influenza virus. This test cannot determine whether a person has seasonal or swine flu; however, the state of Oklahoma has been testing hundreds of random samples each week, and at this time, 98% of the influenza they've tested has been swine flu, so Clayton's doctor is assuming that all positive influenza tests are H1N1 at this time. This will probably change as we come into November, but it doesn't really change how a patient will be treated because flu is flu.
2. Clayton was prescribed Tamiflu. I did not ask if he was prescribed this because he was a heart patient or because he was a young child or because that's just what they do. So if Clayton was a heart healthy child, I don't know if they would have prescribed Tamiflu or not.
3. Clayton cannot take decongestants or cough suppressants because of his heart condition. He has been on plain old Mussinex, which apparently is neither. It seems to have helped his tight cough turn nice and "productive" to put it nicely. We also try to avoid Tylenol (his triscupid valve issues cause some back up in his liver) and Motrin (because he's on aspirin as a blood thinner); however, desperate times call for desperate measures, and he did take these around the clock the first few days to try to ease the workload on his heart. He is on none of these now.
4. Keeping Eli and Clayton seperated is nearly impossible. I considered it, but keeping a child who doesn't feel sick confined to his room or my room is just not feasible in my house. I would have of course taken more precautions if Clayton had actually acted halfway sick. Who knows? This is probably the wrong approach, but I just go with my gut and do the best I can. Maybe Eli actually had the flu the week before.
This post has become way too long now, so I will close. Thanks for all your prayers. We appreciate it.
When we were at the pediatrician last Tuesday, neither of us could assess how long Clayton had actually had the flu, as he'd had the runny nose for a month, but the fever last Friday led us to believe that was possibly the onset of the flu. That would mean that Clayton didn't start the Tamiflu until four days into the illness, and Tamiflu is most effective if started within about 48 hours of the onset of symptoms.
Long story short, maybe the Tamiflu has helped. Maybe he didn't really need it after all. I don't know, but what I do know is that besides putting himself down for a nap two days this week, this boy hasn't acted sick at all.
To make the light flu story even stranger, just the weekend before all this Eli and I ran fevers for about 48 hours with runny noses and coughing. I never thought it was the flu because you're supposed to feel bad, and we didn't feel great, but we didn't feel that bad either. Could we have had it? I don't know. Our cases seem pretty similar to Clayton's.
Enough rambling... the update:
1. Clayton has been fever free one week now.
2. Clayton still has a slightly runny nose (much improved) and a slightly junky cough, especially in the mornings after he's been laying down all night.
3. Clayton is still on the Tamiflu through Sunday evening.
4. After much debate and research, Clayton will still most likely get a second dose of the H1N1 vaccine, as he's had such a light case, there's the possibility he has not built enough immunity to make it through the season. This is assuming we can locate a second dose for him, which was difficult the first time around.
(His original dose was last week, so he was most likely infected before the vaccine had time to take effect, usually 10 to 14 days after the shot. Clayton has to have the inactivated virus because of his condition, so there is not a possibility of contracting the virus from the vaccine.)
Answers to other questions I've received:
1. Clayton was diagnosed in the pediatrician's office. There's a rapid swab test (about 15 to 20 minutes) a doctor's office can run that tests for influenza virus. This test cannot determine whether a person has seasonal or swine flu; however, the state of Oklahoma has been testing hundreds of random samples each week, and at this time, 98% of the influenza they've tested has been swine flu, so Clayton's doctor is assuming that all positive influenza tests are H1N1 at this time. This will probably change as we come into November, but it doesn't really change how a patient will be treated because flu is flu.
2. Clayton was prescribed Tamiflu. I did not ask if he was prescribed this because he was a heart patient or because he was a young child or because that's just what they do. So if Clayton was a heart healthy child, I don't know if they would have prescribed Tamiflu or not.
3. Clayton cannot take decongestants or cough suppressants because of his heart condition. He has been on plain old Mussinex, which apparently is neither. It seems to have helped his tight cough turn nice and "productive" to put it nicely. We also try to avoid Tylenol (his triscupid valve issues cause some back up in his liver) and Motrin (because he's on aspirin as a blood thinner); however, desperate times call for desperate measures, and he did take these around the clock the first few days to try to ease the workload on his heart. He is on none of these now.
4. Keeping Eli and Clayton seperated is nearly impossible. I considered it, but keeping a child who doesn't feel sick confined to his room or my room is just not feasible in my house. I would have of course taken more precautions if Clayton had actually acted halfway sick. Who knows? This is probably the wrong approach, but I just go with my gut and do the best I can. Maybe Eli actually had the flu the week before.
This post has become way too long now, so I will close. Thanks for all your prayers. We appreciate it.
Wednesday, October 21, 2009
Swine Flu
Yes, lucky us. Clayton, the member of this family least in need of the swine flu, tested positive for it yesterday. Urggg... I've been working to keep him hand sanitized up, and out of public as much as possible without giving up church and preschool, but he's got it anyway. Funny thing is, I was completely shocked by the test results.
Clayton has had a runny nose for over a month now. I creditted this to preschool, his first time being with multiple other children for more than an hour at church on Sundays. Last Friday afternoon he started running a low grade fever, which came and went over the weekend. Monday morning there was a pretty significant cough, but no fever. On Tuesday morning I thought I'd take him to the pediatrician, just to mention the everlasting runny nose and new cough. She wanted to swab him for swine flu, and I consented, but neither of us felt this was the flu, as he just hasn't been sick enough, especially for a heart kid.
Well, we were wrong. The test came back positive. She prescribed Tamiflu, which he's been taking, and so far, so good. He hasn't had any fever since Sunday morning (two days pre-Tamiflu). He still has a pretty junky cough and the runny nose, and he's more a little more tired than usual, but other than that, he seems to be fine.
Eli didn't have any flu symptoms, but the pediatrician did look him over, and found two "pretty significant" ear infections. Mom of the Year, right here. Who knew? No fever, no cranky. I'm not sure what else could have tipped me off. By the way, Clayton and I have never had an ear infection, so this is new territory for me.
Anyway, a million prescriptions and over the counter meds later, we made it out of the pharmacy and home, where we've been ever since.
Clayton is doing really well with this, and I really hope he's building enough antibodies to fight off this thing the rest of the year. I've had nightmares about swine flu since last spring, and recently reading about a child with HLHS dying from swine flu has not lessened my anxiety. Keep your fingers crossed, and say a little prayer for Clayton's healing. Please also say a little prayer for the rest of us, as we have zero desire to get the flu.
Clayton has had a runny nose for over a month now. I creditted this to preschool, his first time being with multiple other children for more than an hour at church on Sundays. Last Friday afternoon he started running a low grade fever, which came and went over the weekend. Monday morning there was a pretty significant cough, but no fever. On Tuesday morning I thought I'd take him to the pediatrician, just to mention the everlasting runny nose and new cough. She wanted to swab him for swine flu, and I consented, but neither of us felt this was the flu, as he just hasn't been sick enough, especially for a heart kid.
Well, we were wrong. The test came back positive. She prescribed Tamiflu, which he's been taking, and so far, so good. He hasn't had any fever since Sunday morning (two days pre-Tamiflu). He still has a pretty junky cough and the runny nose, and he's more a little more tired than usual, but other than that, he seems to be fine.
Eli didn't have any flu symptoms, but the pediatrician did look him over, and found two "pretty significant" ear infections. Mom of the Year, right here. Who knew? No fever, no cranky. I'm not sure what else could have tipped me off. By the way, Clayton and I have never had an ear infection, so this is new territory for me.
Anyway, a million prescriptions and over the counter meds later, we made it out of the pharmacy and home, where we've been ever since.
Clayton is doing really well with this, and I really hope he's building enough antibodies to fight off this thing the rest of the year. I've had nightmares about swine flu since last spring, and recently reading about a child with HLHS dying from swine flu has not lessened my anxiety. Keep your fingers crossed, and say a little prayer for Clayton's healing. Please also say a little prayer for the rest of us, as we have zero desire to get the flu.
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