I thought I'd add a little humor to my blog since I usually only post when something horrific has happened. I frequently post my conversations with Miles on facebook. He's a pretty hilarious little fellow....which is good because he's also suuuuuuuper naughty (that's why we're making him go to Catholic preschool--if anyone can whip him in to shape, it's them. ha. ha.). Sometimes I feel guilty that I don't post much about my sweet (and also naughty) little Conan, but there's a reason. I can't post conversations with Conan because Conan doesn't really converse. His vocabulary is ever growing though. I just thought I'd share it with you. This is the Conan Pronunciation Guide (you can call it CPG for short).
bottle=bahtoo
Yo Gabba Gabba=GABBY GABBY!!!!!!!
let's go=ee-koh
cookie=quickie
quiet=kwykee
toothpaste=psht
Phoebe=Beebee
baby=beebee
crying=a-kign
Mickey Mouse=Meekee
Minnie Mouse=Meemee
here you go=ah-go
goodnight=nigh-nigh
toothbrush=bush
Miles=Mighs
stove=uh-hot
bathtub=showee
water=wahtoo
milk=mook
iPad=iPad (he even includes the capital P)
hello=uhyoh
door-doy
stairs-shtees
pat-a-cake=(lifting both legs in the air)pee-kay
this little piggy=(sticking a foot in my face)pee-kay
fruit snack=nack
pacifier=pasthi
get dressed=dsht
sippy cup=sip-see
hair=heh
This is but a sampling. I'm sure that I will have more to add as I hear them.
Friday, August 10, 2012
Another One Bites the Dust--car that is
Well, we are officially a one car family. This is actually the first time since Be and I were married that we've only had one car. That's not to say that we haven't gone through a couple of cars, but with those, we'd had time to plan, save and purchase a replacement before getting rid of the previous. Not so much this time.
Even though it was almost 10 years old, our Intrepid had been a good car. We purchased it when it was already 6 years old, but it had low mileage and had been taken good care of, being used to transport visiting authorities for the church. Anyway, we're certainly not perfect in our upkeep, but we try to stay on top of oil changes and the such.
On Sunday, the car started reading hottish when Ben drove it to Zariah's baby blessing in Stockton, but it wasn't a huge deal. He drove my car to work on Monday and was off on Tuesday. The car seemed okay on Wednesday. He just wouldn't run the AC. Unfortunately, it did end up overheating right as he got off the freeway in SL. I went to meet him, and we were going to have the car towed back to Tooele to have our trusted mechanic look at it. The tow truck was about an hour out, and in the meantime, the car cooled down and started up okay. We decided to cancel the tow, and I'd just follow Ben back to Tooele. I got stuck at a light while still in SL, so I was left far behind Ben. I kept a watchful eye on the side of the road though in case he had to pull off. I never saw our car the entire drive back, so I figured he'd made it to Main Street Garage.
Just as I was about to pull in to the mechanic I got a call. It was a UHP officer requesting that I come pick up my husband. He said that his car had caught fire, but he was okay, and I needed to come get him. Fantastic! I didn't assume it was too big of a deal. We'd actually had a car catch fire before, but it was practically nothing, put itself out quickly, and after some work, was perfectly fine. Boy was I in for a surprise.
I headed back to I-80. The officer had told me that he was at the Great Salt Lake lookout, which was a relief to me because I'm always terrified about stopping on the side of the freeway. Just as I got to the freeway entrance, I saw a giant cloud of black smoke. "Oh please don't be my car!! Be some stupid lightning fire somewhere." A selfish thought, I know. A few miles down the freeway proved otherwise when I could make out a burnt up shell of a car on the other side.
A UHP officer met me at the entrance to the lookout, that had been blockaded, and let me through after a few questions. My favorite was, "Do you by chance have an insurance card? I don't think your husband is going to be able to find his." Ha. Ha. He certainly wouldn't have been able to. The contents of the car were completely burned. Even the seats were disintegrated. It's hard to tell in the photos, but if you look hard, you can see that all that is left of the driver's seat is some fluff that had fallen into the back.
Ben was obviously very shaken, but this was his account of what happened....not in his exact words, but you'll get the idea. He was driving home and was quite a bit ahead of me. Even though the car wasn't registering hot, he noticed a little smoke coming out of the hood, so he pulled off at the lookout. He was still in the car and saw a trucker pull in behind him waving his cell phone. Ben said something like "Thanks, it would be great if I could use your phone. I need to call my wife." The response, "Why would you call your wife? You need to get out of your car right now. It's on fire. You need to call 911." Ben hopped out of the car, the smoke turned black and KABOOM! Fiery inferno!
This is a picture that a UHP officer took with his phone and emailed to Ben. Ben said that it was incredible how quickly the entire car was engulfed in flames. He said it was terrifying but kind of cool when the tires exploded and when the air bag exploded and when the can of febreeze that was sitting in the car exploded. The car was in flames for at least a good 20-25 minutes. I had time to get almost home and back to the lookout, and the last of the flames were just barely going out when I got there. Ben said that the fire was incredible, and you can see how black the smoke is. I could see the giant smoke plumes with no problem from a good 10 miles aways and would have seen them from much further if I would've been paying attention and looked up.
All in all, not a great day. Obviously, Ben missed the day of work, our car exploded, we only had liability on it, so no sort of reimbursement, and there's a chance that we could be held liable for road damage. Despite all of the crappiness, we were definitely blessed. Things worked out with Ben's training, so it wasn't a disaster that he wasn't at work. We were lucky enough to have an observant trucker following Ben that got him out of the car just in time. Without even thinking of a reason why, I had told Miles no when he asked if he could ride home with daddy, an enormous blessing since I know that there wouldn't have been time to get a child out of a car seat. Things could have been so much worse, and I know that we were being looked out for. Sure, we're down a car and are not currently in a position to replace it, so that really sucks, but everyone is safe. And I really think that things will be okay. It's looking like Ben will hopefully be able to change shifts, based on the circumstances, so that the car will be home to take Miles to and from school and to get to and from church. And we'll just take other things as they come up. Bad things happen (seems like pretty frequently at the Jackson residence), but life is good, and we've been able to get through everything so far. I don't think that this challenge will be any different.
Even though it was almost 10 years old, our Intrepid had been a good car. We purchased it when it was already 6 years old, but it had low mileage and had been taken good care of, being used to transport visiting authorities for the church. Anyway, we're certainly not perfect in our upkeep, but we try to stay on top of oil changes and the such.
On Sunday, the car started reading hottish when Ben drove it to Zariah's baby blessing in Stockton, but it wasn't a huge deal. He drove my car to work on Monday and was off on Tuesday. The car seemed okay on Wednesday. He just wouldn't run the AC. Unfortunately, it did end up overheating right as he got off the freeway in SL. I went to meet him, and we were going to have the car towed back to Tooele to have our trusted mechanic look at it. The tow truck was about an hour out, and in the meantime, the car cooled down and started up okay. We decided to cancel the tow, and I'd just follow Ben back to Tooele. I got stuck at a light while still in SL, so I was left far behind Ben. I kept a watchful eye on the side of the road though in case he had to pull off. I never saw our car the entire drive back, so I figured he'd made it to Main Street Garage.
Just as I was about to pull in to the mechanic I got a call. It was a UHP officer requesting that I come pick up my husband. He said that his car had caught fire, but he was okay, and I needed to come get him. Fantastic! I didn't assume it was too big of a deal. We'd actually had a car catch fire before, but it was practically nothing, put itself out quickly, and after some work, was perfectly fine. Boy was I in for a surprise.
I headed back to I-80. The officer had told me that he was at the Great Salt Lake lookout, which was a relief to me because I'm always terrified about stopping on the side of the freeway. Just as I got to the freeway entrance, I saw a giant cloud of black smoke. "Oh please don't be my car!! Be some stupid lightning fire somewhere." A selfish thought, I know. A few miles down the freeway proved otherwise when I could make out a burnt up shell of a car on the other side.
A UHP officer met me at the entrance to the lookout, that had been blockaded, and let me through after a few questions. My favorite was, "Do you by chance have an insurance card? I don't think your husband is going to be able to find his." Ha. Ha. He certainly wouldn't have been able to. The contents of the car were completely burned. Even the seats were disintegrated. It's hard to tell in the photos, but if you look hard, you can see that all that is left of the driver's seat is some fluff that had fallen into the back.
Ben was obviously very shaken, but this was his account of what happened....not in his exact words, but you'll get the idea. He was driving home and was quite a bit ahead of me. Even though the car wasn't registering hot, he noticed a little smoke coming out of the hood, so he pulled off at the lookout. He was still in the car and saw a trucker pull in behind him waving his cell phone. Ben said something like "Thanks, it would be great if I could use your phone. I need to call my wife." The response, "Why would you call your wife? You need to get out of your car right now. It's on fire. You need to call 911." Ben hopped out of the car, the smoke turned black and KABOOM! Fiery inferno!
All in all, not a great day. Obviously, Ben missed the day of work, our car exploded, we only had liability on it, so no sort of reimbursement, and there's a chance that we could be held liable for road damage. Despite all of the crappiness, we were definitely blessed. Things worked out with Ben's training, so it wasn't a disaster that he wasn't at work. We were lucky enough to have an observant trucker following Ben that got him out of the car just in time. Without even thinking of a reason why, I had told Miles no when he asked if he could ride home with daddy, an enormous blessing since I know that there wouldn't have been time to get a child out of a car seat. Things could have been so much worse, and I know that we were being looked out for. Sure, we're down a car and are not currently in a position to replace it, so that really sucks, but everyone is safe. And I really think that things will be okay. It's looking like Ben will hopefully be able to change shifts, based on the circumstances, so that the car will be home to take Miles to and from school and to get to and from church. And we'll just take other things as they come up. Bad things happen (seems like pretty frequently at the Jackson residence), but life is good, and we've been able to get through everything so far. I don't think that this challenge will be any different.
Monday, June 4, 2012
The Newest Jackson
I should have posted something while we were in the hospital, but I guess I forgot I had a blogg. We finally had our little girl on Tuesday (5/8) Her name is Phoebe Veralyn Jackson. She was born at 4:09pm and was 5 lbs 14 oz., 19" long. Everything went really smoothly for both baby and mommy.
I was blessed with an OBGYN that, like me, prefers the convenience of a scheduled delivery as opposed to being woken up in the middle of the night with a surprise, so I was able to be induced a little less than a week prior to my due date. Worked out really great for me because one of my biggest fears was the possibility of going into labor naturally, having to try to get a hold of Ben at work, wait 45 mins. for him to come home only to have to drive for another hour to get to the hospital. I've heard too many delivery on the freeway nightmare stories, so I appreciated being induced a little early.
I headed into the hospital at 11:00am. After about 20 minutes of admissions and paperwork, I was given the iv of petosin. Maybe a half hour later, Dr. Tanner came in to break my water. This may be (probably is) more than anyone wants to know, but I thought it was kind of interesting. They usually use a thin hooked device to break waters. I was induced with both of my boys, and that's how it was done, with no problem. This time it just wasn't happening, and he ended up having to use a scalpel, and that even took some effort.
We just hung out for an hour or so. I think I watched some "Swamp People". I was feeling quite a bit of pain, so I asked for the epidural pretty early. That was Ben's favorite part. I kind of wish that there were a mirror or something behind me, so I could see what was going on because it sounds pretty cool. I'm sure it would hurt a lot more if I saw it though. I could tell that things weren't going normal with this epidural because it was taking a pretty long time, and I could feel several "pops", and I think there is usually only one. When I thought that it was finished, the doctor administering it said nervously, "Sometimes when you get an epidural, the needle hits a pocket of fat or a blood vessel and has to be redone. It looks like I've hit a blood vessel, so I'll have to redo it. The good news is about 75% of it is okay, so this shouldn't take long". I didn't really care because I couldn't really feel it anyway, but Ben said that when he put the catheter in, blood started spurting out of my back like I sprung a leak. I think I would have liked to see that.
It wasn't too long before, even with the epidural, the contractions got pretty painful. This was a new experience for me because I really felt almost nothing at all with the boys. The nurse came in to check me, and in less than an hour I'd gone from a 2 1/2 to a 9 1/2. This was about a seven hour process with the boys. The nurse had me do a practice push, and when I did, baby's heartrate dropped drastically, so she told me to stop pushing. She suspected the cord may be around the neck a little bit, but she was fine as long as I wasn't pushing, and I was on oxygen. Dr. Tanner came down and must have fixed the problem right away because he had me start pushing again. After the second push, he told me to look down. I said "gross" and told him that I didn't want to see anything, and he again, a little annoyed, told me to look down. I looked down, and he was holding a baby. Weird. Two pushes. I didn't even know that she was out. She was so little, tiny headed, and didn't look anything like the boys. I think that Dr. Tanner may have just smuggled a baby in with him, and I'm actually still pregnant.
Luckily, we started seeing some of Miles in her mouth and some of me in her nose and a whole lot of Conan in her mannerisms, so I'm pretty sure she's ours. She's just so tiny! And her head is not a giant globe (I suspect the reason for the quick delivery). Everything looked good with her, and we got to spend most of the two days in the hospital with her in the room. With the exception of the regular blood sugar testing (that returned to normal by the time we were discharged), and a couple of hours I asked them to take her to the nursery, so I could sleep, she was always with us. Good practice for real life.
Now, we're home and trying to get adjusted to life with 3 kids. The boys love her, but we have to keep a close eye on them to make sure they don't accidentally jump on her while she's laying on the bed or to avoid Conan trying to carry her by her head. I think this will be our challenge. I'm glad that they like her and aren't too jealous as of yet.
P.S. This is a very old post that I just never actually posted. Sorry. I will try to be more diligent. Also, remember when looking at that lovely family picture that I had just birthed out a baby. Certainly not my lovliest picture, but those babies sure are cute.
I was blessed with an OBGYN that, like me, prefers the convenience of a scheduled delivery as opposed to being woken up in the middle of the night with a surprise, so I was able to be induced a little less than a week prior to my due date. Worked out really great for me because one of my biggest fears was the possibility of going into labor naturally, having to try to get a hold of Ben at work, wait 45 mins. for him to come home only to have to drive for another hour to get to the hospital. I've heard too many delivery on the freeway nightmare stories, so I appreciated being induced a little early.
I headed into the hospital at 11:00am. After about 20 minutes of admissions and paperwork, I was given the iv of petosin. Maybe a half hour later, Dr. Tanner came in to break my water. This may be (probably is) more than anyone wants to know, but I thought it was kind of interesting. They usually use a thin hooked device to break waters. I was induced with both of my boys, and that's how it was done, with no problem. This time it just wasn't happening, and he ended up having to use a scalpel, and that even took some effort.
We just hung out for an hour or so. I think I watched some "Swamp People". I was feeling quite a bit of pain, so I asked for the epidural pretty early. That was Ben's favorite part. I kind of wish that there were a mirror or something behind me, so I could see what was going on because it sounds pretty cool. I'm sure it would hurt a lot more if I saw it though. I could tell that things weren't going normal with this epidural because it was taking a pretty long time, and I could feel several "pops", and I think there is usually only one. When I thought that it was finished, the doctor administering it said nervously, "Sometimes when you get an epidural, the needle hits a pocket of fat or a blood vessel and has to be redone. It looks like I've hit a blood vessel, so I'll have to redo it. The good news is about 75% of it is okay, so this shouldn't take long". I didn't really care because I couldn't really feel it anyway, but Ben said that when he put the catheter in, blood started spurting out of my back like I sprung a leak. I think I would have liked to see that.
It wasn't too long before, even with the epidural, the contractions got pretty painful. This was a new experience for me because I really felt almost nothing at all with the boys. The nurse came in to check me, and in less than an hour I'd gone from a 2 1/2 to a 9 1/2. This was about a seven hour process with the boys. The nurse had me do a practice push, and when I did, baby's heartrate dropped drastically, so she told me to stop pushing. She suspected the cord may be around the neck a little bit, but she was fine as long as I wasn't pushing, and I was on oxygen. Dr. Tanner came down and must have fixed the problem right away because he had me start pushing again. After the second push, he told me to look down. I said "gross" and told him that I didn't want to see anything, and he again, a little annoyed, told me to look down. I looked down, and he was holding a baby. Weird. Two pushes. I didn't even know that she was out. She was so little, tiny headed, and didn't look anything like the boys. I think that Dr. Tanner may have just smuggled a baby in with him, and I'm actually still pregnant.
Luckily, we started seeing some of Miles in her mouth and some of me in her nose and a whole lot of Conan in her mannerisms, so I'm pretty sure she's ours. She's just so tiny! And her head is not a giant globe (I suspect the reason for the quick delivery). Everything looked good with her, and we got to spend most of the two days in the hospital with her in the room. With the exception of the regular blood sugar testing (that returned to normal by the time we were discharged), and a couple of hours I asked them to take her to the nursery, so I could sleep, she was always with us. Good practice for real life.
Now, we're home and trying to get adjusted to life with 3 kids. The boys love her, but we have to keep a close eye on them to make sure they don't accidentally jump on her while she's laying on the bed or to avoid Conan trying to carry her by her head. I think this will be our challenge. I'm glad that they like her and aren't too jealous as of yet.
Monday, March 5, 2012
Miles had his annual cardiology appointment today. I didn't have too many concerns. This year hasn't been terribly eventful, well not too much out of the usual anyway. He still has asthma exacerbation's all the time, and he still typically gets pneumonia one or more times a month, but that was all going on prior to his last visit. And in the past year, he's only been hospitalized once (I think).
The paperwork today asked if there were any new symptoms. I did have two. Over the past couple of months, Miles has been vomiting on a pretty regular basis, maybe 3 or 4 times a week, for no particular reason. He has had reflux issues in the past, but that was always preceded by coughing. Now, it's just out of the blue. Number two, there have been a few times, also in the past couple of months, where Miles has come to me complaining that he needed a treatment. There weren't any signs of respiratory distress, so I'd tell him no he didn't. You see, because Miles has been taking so much medicine for so long, he's actually likes it, so I thought he just "wanted" a treatment. After some insistence on his part, though, I'd take his oxygen levels and find them in the low to mid '80s. Very strange since there wasn't wheezing or retracting, so I was curious about that.
As I suspected, the appointment did go very well. Dr. Puchalski said that Miles's mitral valve sounded great. That is kind of the biggest concern of his problems. Last year, there was some worry that the reason for all of the respiratory problems and clouding in Miles's lungs was because of mitral valve stenosis. The mitral valve can become hardened and move as it should, and it can allow blood to pool in the chamber or leak into the lung. Even though, Dr. Puchalski couldn't hear anything that pointed in that direction, last year, he ordered an echo to check it out because a separate condition just seemed too unlikely. As he put it, lightening did strike twice, and the respiratory issues were not heart related. In fact, he thought that the mitral valve actually looked healthier than it had when Miles was first diagnosed, which is almost impossible, improvement, I mean. Anyway, mitral valve still sounded great.
He did hear some leaking from the aortic valve. The typical heart has a tricuspid aortic valve (with three leaflets). In many Shone's kids, the aortic valve is only bicuspid. This is the case with Miles. I believe it's a relatively common issue, and usually doesn't cause problems, but the valve can become narrow and restrict blood flow, or can become leaky, as is the case with Miles. It still isn't anything to cause too much worry at this point. It just has to monitored (with only a yearly check-up unless something worsens), but I was told that it would have to be monitored for the rest of his life. I'm not sure why, but I just thought it was a little funny that the doctor added that last part.
Dr. Puchalski did address my concerns, but really didn't have any super helpful answers. He seemed a little perplexed by both issues. He didn't think that the vomiting would have any relation to his heart problems, but he did think that it would be a good idea to visit a GI specialist since it is such a frequent problem. I didn't really think that this was a result of Shone's, but since I'm certainly not an expert, I'm going to bring up any weird thing that happens. I think that this could just be the result of genetics. Ben has a real issue with throwing up too, so the males in this family may just have very weak stomachs. Dr. Puchalski did suggest something that I found a little interesting though. He said that there is a disease (not a serious disease) where people just throw up a lot. He told me the name, and it was something super hilarious that sounds made up, but I can't remember it. That's part of the reason that he thought that it may be advantageous to see a GI specialist.
As far as the mysterious low oxygen levels go, Dr. Puchalski didn't have a real explanation for that either. He said that it was very strange for that to happen without obvious signs, but he also said that Miles compensates very well. We know that by the fact that he wasn't diagnosed with Shone's until he was one. It's usually diagnosed in utero. By the time he was diagnosed, his coarc was so bad, that it required surgery within weeks. I saw the portion of his aorta that was removed. There was even a pinhole left. The surgeon seemed a little shocked but also excited to show us what Miles had overcome. Without any major blood canal to his extremities, Miles still did not have any obvious symptoms. Most kids would have had swollen hands and feet and blue fingers and toes. Not Miles though. His lesser passageways must have taken control and compensated for the practically useless aorta. Pretty amazing how the body can do that. He did give some recommendations for additional things to watch for. He said that even if I was not seeing bluing around Miles's lips, to check the inside of his mouth. When oxygen levels are particularly low, the interior part of the lips will almost always blue. He also told me to be aware of the color of his lower nail beds. They will usually get a bluish tint as well.
Anyhow, I was assured that this, too, was strictly a respiratory issue, not a cardiac one. He told me that the only reason something like that would happen from a cardiac stance would be if blue blood was mixing with red blood, and right now, that is not happening. It's nice--well, kind of--to know definitively, that the respiratory problems are a separate issue. I say kind of because it would also be really nice to have an explanation because we still know that it's not all asthma. I suppose we'll just continue to see a million different doctors for a million different issues. Right now, Miles has his regular pediatrician, his cardiologist, his pulmonologist, his allergist, he sees a respiratory therapist pretty regularly (although it's not the same person each time), and now, I guess we get to add a GI specialist. You know, many Shone's patients also have neurology and ADHD problems, so maybe down the road, we'll get to add a few more.
The paperwork today asked if there were any new symptoms. I did have two. Over the past couple of months, Miles has been vomiting on a pretty regular basis, maybe 3 or 4 times a week, for no particular reason. He has had reflux issues in the past, but that was always preceded by coughing. Now, it's just out of the blue. Number two, there have been a few times, also in the past couple of months, where Miles has come to me complaining that he needed a treatment. There weren't any signs of respiratory distress, so I'd tell him no he didn't. You see, because Miles has been taking so much medicine for so long, he's actually likes it, so I thought he just "wanted" a treatment. After some insistence on his part, though, I'd take his oxygen levels and find them in the low to mid '80s. Very strange since there wasn't wheezing or retracting, so I was curious about that.
As I suspected, the appointment did go very well. Dr. Puchalski said that Miles's mitral valve sounded great. That is kind of the biggest concern of his problems. Last year, there was some worry that the reason for all of the respiratory problems and clouding in Miles's lungs was because of mitral valve stenosis. The mitral valve can become hardened and move as it should, and it can allow blood to pool in the chamber or leak into the lung. Even though, Dr. Puchalski couldn't hear anything that pointed in that direction, last year, he ordered an echo to check it out because a separate condition just seemed too unlikely. As he put it, lightening did strike twice, and the respiratory issues were not heart related. In fact, he thought that the mitral valve actually looked healthier than it had when Miles was first diagnosed, which is almost impossible, improvement, I mean. Anyway, mitral valve still sounded great.
He did hear some leaking from the aortic valve. The typical heart has a tricuspid aortic valve (with three leaflets). In many Shone's kids, the aortic valve is only bicuspid. This is the case with Miles. I believe it's a relatively common issue, and usually doesn't cause problems, but the valve can become narrow and restrict blood flow, or can become leaky, as is the case with Miles. It still isn't anything to cause too much worry at this point. It just has to monitored (with only a yearly check-up unless something worsens), but I was told that it would have to be monitored for the rest of his life. I'm not sure why, but I just thought it was a little funny that the doctor added that last part.
Dr. Puchalski did address my concerns, but really didn't have any super helpful answers. He seemed a little perplexed by both issues. He didn't think that the vomiting would have any relation to his heart problems, but he did think that it would be a good idea to visit a GI specialist since it is such a frequent problem. I didn't really think that this was a result of Shone's, but since I'm certainly not an expert, I'm going to bring up any weird thing that happens. I think that this could just be the result of genetics. Ben has a real issue with throwing up too, so the males in this family may just have very weak stomachs. Dr. Puchalski did suggest something that I found a little interesting though. He said that there is a disease (not a serious disease) where people just throw up a lot. He told me the name, and it was something super hilarious that sounds made up, but I can't remember it. That's part of the reason that he thought that it may be advantageous to see a GI specialist.
As far as the mysterious low oxygen levels go, Dr. Puchalski didn't have a real explanation for that either. He said that it was very strange for that to happen without obvious signs, but he also said that Miles compensates very well. We know that by the fact that he wasn't diagnosed with Shone's until he was one. It's usually diagnosed in utero. By the time he was diagnosed, his coarc was so bad, that it required surgery within weeks. I saw the portion of his aorta that was removed. There was even a pinhole left. The surgeon seemed a little shocked but also excited to show us what Miles had overcome. Without any major blood canal to his extremities, Miles still did not have any obvious symptoms. Most kids would have had swollen hands and feet and blue fingers and toes. Not Miles though. His lesser passageways must have taken control and compensated for the practically useless aorta. Pretty amazing how the body can do that. He did give some recommendations for additional things to watch for. He said that even if I was not seeing bluing around Miles's lips, to check the inside of his mouth. When oxygen levels are particularly low, the interior part of the lips will almost always blue. He also told me to be aware of the color of his lower nail beds. They will usually get a bluish tint as well.
Anyhow, I was assured that this, too, was strictly a respiratory issue, not a cardiac one. He told me that the only reason something like that would happen from a cardiac stance would be if blue blood was mixing with red blood, and right now, that is not happening. It's nice--well, kind of--to know definitively, that the respiratory problems are a separate issue. I say kind of because it would also be really nice to have an explanation because we still know that it's not all asthma. I suppose we'll just continue to see a million different doctors for a million different issues. Right now, Miles has his regular pediatrician, his cardiologist, his pulmonologist, his allergist, he sees a respiratory therapist pretty regularly (although it's not the same person each time), and now, I guess we get to add a GI specialist. You know, many Shone's patients also have neurology and ADHD problems, so maybe down the road, we'll get to add a few more.
Thursday, November 3, 2011
Back to the usual, blogging because of a hospital visit. This one wasn't the usual visit though.
Last night, Miles and I were downstairs watching Ben play his new video game (the new Uncharted game is really cool). Conan was already up in bed since it was probably close to 9:00pm. Ben started complaining that a couple of sunflower seeds he had eaten were giving him really bad heart burn. I thought it was really funny because he had literally only eaten maybe five seeds. Apparently, they give him heart burn though. He went upstairs to get some antacids, and Miles and I waited and waited for him to come back down. A few minutes later, from the basement, we could hear Ben vomiting violently in the bathroom upstairs. That lasted for a good ten minutes. Ben's always had a pretty weak stomach, so i didn't think too much of it, although it did last a lot longer than normally. A few minutes later, I heard some screaming, then Ben yelled for me. I ran upstairs and found him writhing on the floor in the entryway. I asked if he wanted to go to the hospital, and he told me to give him a half hour. He only lasted about 5 minutes though.
We all threw some clothes on since we'd already gotten ready for bed. I called Alex to see if I could drop the kids off, and he quickly answered that he was at the Gateway, but he was on the way home. He said that he would call as soon as he got home. I was so grateful that they were willing to take them even though they weren't at home....and especially because I didn't think about it at the time, but it was Jenn's birthday. Man, I'm a jerk. Anyway, I loaded the kids in the car, and Ben hobbled out. He was definitely in pain when we left, but he seemed okay enough to just take him to Urgent Care. As we drove down Main Street it just got worse and worse though. Every minute or so, he'd clench his chest and scream for about 30 seconds. It got to the point where he was instructing me to run red lights, and obviously, we went straight to the ER.
In all the chaos, I had set my phone down by my purse after talking to Alex and left it at the house. I was a little concerned because how was I supposed to arrange babies without being able to get a hold of him? Whoops! Luckily, I have great in-laws that didn't even go home before coming to the ER. Not long after taking the kids into the waiting area, I saw their van pull up in front of the doors. I don't even know how they got there so fast. Thank you so much Alex and Jenn! You guys are the best!
Not too much happened at the hospital. They gave him morphine, and that really seemed to calm Ben down (and make him a little silly). They did an EKG, x-ray, and a ct, along with blood work. Nothing showed anything terribly telling. I guess one of his kidneys is a little small, but that wouldn't have caused these problems. They narrowed it down to gall bladder problems and/or ulcers, but they ultimately sent us home and told us to come back if it came back. Not super helpful. Although, I'm very glad that it wasn't a heart issue, it would have been so nice to have some sort of answer.
Ben hasn't had any more of those "episodes" since we got back from the hospital, but he did say that he felt like his chest had been run over by a dump truck. Today, he followed up with his regular doctor. I stayed home with the kids, so I honestly don't know what happened. I was asleep when he got home, and he was asleep, and still is, when I woke up. I did gather that he was referred to a gi specialist, and he was given nexium. I'm pretty anxious for Ben to go to a specialist because I've thought that he has ulcers for a long time. I'd definitely like to get it all under control. Our family has enough medical issues as is.
Last night, Miles and I were downstairs watching Ben play his new video game (the new Uncharted game is really cool). Conan was already up in bed since it was probably close to 9:00pm. Ben started complaining that a couple of sunflower seeds he had eaten were giving him really bad heart burn. I thought it was really funny because he had literally only eaten maybe five seeds. Apparently, they give him heart burn though. He went upstairs to get some antacids, and Miles and I waited and waited for him to come back down. A few minutes later, from the basement, we could hear Ben vomiting violently in the bathroom upstairs. That lasted for a good ten minutes. Ben's always had a pretty weak stomach, so i didn't think too much of it, although it did last a lot longer than normally. A few minutes later, I heard some screaming, then Ben yelled for me. I ran upstairs and found him writhing on the floor in the entryway. I asked if he wanted to go to the hospital, and he told me to give him a half hour. He only lasted about 5 minutes though.
We all threw some clothes on since we'd already gotten ready for bed. I called Alex to see if I could drop the kids off, and he quickly answered that he was at the Gateway, but he was on the way home. He said that he would call as soon as he got home. I was so grateful that they were willing to take them even though they weren't at home....and especially because I didn't think about it at the time, but it was Jenn's birthday. Man, I'm a jerk. Anyway, I loaded the kids in the car, and Ben hobbled out. He was definitely in pain when we left, but he seemed okay enough to just take him to Urgent Care. As we drove down Main Street it just got worse and worse though. Every minute or so, he'd clench his chest and scream for about 30 seconds. It got to the point where he was instructing me to run red lights, and obviously, we went straight to the ER.
In all the chaos, I had set my phone down by my purse after talking to Alex and left it at the house. I was a little concerned because how was I supposed to arrange babies without being able to get a hold of him? Whoops! Luckily, I have great in-laws that didn't even go home before coming to the ER. Not long after taking the kids into the waiting area, I saw their van pull up in front of the doors. I don't even know how they got there so fast. Thank you so much Alex and Jenn! You guys are the best!
Not too much happened at the hospital. They gave him morphine, and that really seemed to calm Ben down (and make him a little silly). They did an EKG, x-ray, and a ct, along with blood work. Nothing showed anything terribly telling. I guess one of his kidneys is a little small, but that wouldn't have caused these problems. They narrowed it down to gall bladder problems and/or ulcers, but they ultimately sent us home and told us to come back if it came back. Not super helpful. Although, I'm very glad that it wasn't a heart issue, it would have been so nice to have some sort of answer.
Ben hasn't had any more of those "episodes" since we got back from the hospital, but he did say that he felt like his chest had been run over by a dump truck. Today, he followed up with his regular doctor. I stayed home with the kids, so I honestly don't know what happened. I was asleep when he got home, and he was asleep, and still is, when I woke up. I did gather that he was referred to a gi specialist, and he was given nexium. I'm pretty anxious for Ben to go to a specialist because I've thought that he has ulcers for a long time. I'd definitely like to get it all under control. Our family has enough medical issues as is.
Saturday, October 29, 2011
Typically, I remember to write when Miles is sick, and although he is having a few problems today, I really just thought it was time for an update. It's been a good three months, and a lot has happened. Trying to fit everything in would take much longer than anyone would ever be willing to read, so I'll give the condensed version.
We were so excited that mid August marked not only the two year anniversary of Miles' OHS, but also marked a full year without being admitted to the hospital. That's not to say we didn't have our problems, and their were even ER visits, but we were able to basically control things "in house". Quite an accomplishment considering the previous year we averaged almost a stay a month. Unfortunately, our streak lasted only that year because within a couple of weeks, we were back at Primary. Miles had had a particularly bad asthma episode and being that it was either late or the weekend (it was a while ago, so I don't exactly remember), we visited the Instacare. Little was done there other than an x-ray that showed he probably had pneumonia. We were sent home for more treatments and with a prescription of zithromax. Things just seemed to get worse, so we made a second trip, this time to the Urgentcare later that night. They gave him a super-neb and a prescription for prednisone. The doctor told me that he really couldn't do anything more than I was already doing at home, so if things got any worse, he needed to go to the ER. Things seemed to improve though, so we didn't do anything else that night.
The next morning, I took him to his pediatrician, just for a follow up. He sounded so much better, so I was really surprised when his oxygen levels never exceeded 80, even after a few treatments. I think Dr. Ditty was pretty surprised too, thought his pulse/ox machine wasn't working, but a second gave readings just as bad. He looked at me and said, "I'm really sorry, but I really can't legally let you take him home this low. You're going to have to take him up the hill". Even though his office is connected to Mountain West Medical Center, he would never send me there. He just grabbed an oxygen tank from his closet, set it, hooked him up and told me to go straight to Primary.
I was surprised when after the car ride on over 2 liters of oxygen, his levels were still super low when read at PCMC. I was even more surprised when I was told that not only would Miles need to certainly stay for a few days, but that the doctors were debating on whether he'd stay in the medical unit or in the ICU. The only time he'd stayed in the ICU was right after his surgery.
Luckily, we avoided the ICU, but it did take three days before Miles was able to start being weened off of oxygen. His treatment was basically the same as in the past. And, like in the past, the exacerbation is still kind of unexplained. We've managed to stay out of the hospital since then, so I guess that's good though. Now, it's time to gear up for cold and flu season. I have a feeling it might be a tough one.
Well, that wasn't very condensed, now was it? I'll try to do better with the rest.
The week after Miles was released, we headed to Southern California with Rod, Cathy and Aubrey. It was our first time flying with the kids, and while they were really good, and it saved a lot of time, with a relatively short trip like CA, I think it was more hassle than just driving. We stayed in an amazing condo, thanks to Cathy and Marriott Resorts. It was nice to be able to stay together but still have our own room, and a kitchen was priceless. We spent the first couple of days with the animals at the San Diego Zoo and Sea World. I always love going to those places because we just don't have anything of that level here. Don't get me wrong. I do love Hogle Zoo, but we don't have a Sun Bear. The next three days were spent at my favorite place on the planet. Disneyland. It really is my favorite place, and I've been all over the world. It was so fun to see that Miles really did remember things from last year. This time he understood so much more and was so excited about everything. Conan even got excited by things. He was particularly fascinated by the big Buzz robot in Astro Blasters. We had so much fun at Disneyland that we're thinking that instead of a lot of toys and things, we're going to ask Santa to send us back to Disneyland in January. Our final vacation day we went to Universal Studios. It's been years (like 20) since I've been to Universal, so most of it was new to me. I did not remember them having so much. I know that I disappointed Ben because I am not a thrill ride person, so I skipped some of those. I loved the backlot tour though. So much cooler than I remembered it! And I thought that the Simpson's ride was really fun. It was too bad that Miles was about an inch and a half too short to ride it because he would have loved it. We're hoping that we can stretch him a little by January because he just missed out on some great rides at Disneyland too. Anyhow, it was an awesome trip, and having family there always makes it so much fun!
Because of the hospital stay and our vacation, Miles missed his first two weeks of Joy School. Luckily, we have really great neighbors that brought over a bunch of what he missed out on. I was super excited when some of the gals in the ward invited me to participate. I really wanted to Miles into some form of pre-school, mainly to get him around the other kids on a regular basis. It's been so much fun for Miles, and I just completed my first two classes. The first was on the letter "G". We based it on gardens and ghosts. The next lesson was the letter "H". I told the story of the little red hen and talked about helping, then we did some h is for Halloween activities. On Thursday, we had our Halloween party, and I think that all the kids had a lot of fun. The only complaint that I've had so far is that I have the worst child ever to wake up, and even though school isn't that early at 9:30, Miles always seems to pick those days to want to sleep in. Stinker.
Conan had a major milestone a couple of weeks ago. Literally, while I was in the process of complaining to my family about him not being able to walk, he walked across the cabin living room. I guess he showed me, eh? He's just gotten better since then. I have to say that he really doesn't have very good balance. He's very wobbly. It might have something to do with little tiny feet and legs and a great big fat body and head. He compensates very well though. Just when he's so slanted you think he's going to hit the floor, he wobbles in the other direction. It's very cute. Now that we've got the walking down, we need to work on the talking.
I've been busy the past week trying to figure out Festival of Trees. My mother pointed out that i have less than a month, and I'm getting a little frantic because I'm super disorganized. I think that my small tree and wreath are basically ready to assemble, and I have a relatively clear vision for them. my large tree is another story. After last year, I'm just not sure if this can measure up. It always seems to come together in the end though. I'm sure it will be great. Even if it's not, I know that it will sell because it's a Disney themed tree, and they always do.
Something kind of special happened a couple of days ago. I got an email from one of the publicity heads for Festival of Trees asking permission to share our story in their advertising in the next coming weeks. It wasn't a very specific email, so I wondered if it was kind of a mass email, but I did give permission. I pretty immediately got a response that said that Miles story really touched her, and she was excited to share it. I thought that that was really neat. I still don't know what exactly it all means. I replied and told her that if she needed anything further (pictures, etc.) to let me know. I basically did that hoping I could get more info on what would be happening. I haven't heard back, but that was only last night, so we'll see. My guess is that they may refer to it in one of there radio interviews or something. I'd love to know though. I was curious why they wanted our story since I'm sure it's not the most interesting, but my sister made a good point. Miles is a success story. Doctor's at PCMC caught his problems in the nick of time and corrected what they could at that moment. He gets continued treatment at the hospital, but it really is a positive story.
I can hear my kids trying to murder each other, so I'd better stop for now. I'll try to be back before another few months pass.....hopefully for good news, so stay tuned.
Sunday, July 24, 2011
I was on facebook this evening, and I just happened to click on the blog link for a high school friend. I thought it was a blog link anyway. It turns out that it was more of a carepage/journal of her son's fight with cancer. I haven't kept in touch with this friend in a meaningful way at all since high school, and I did not know that she had a child with cancer. I read a little bit, and I believe he was diagnosed with brain cancer when he was 7. After excessive treatment, it was all but taken care of. Unfortunately, it later returned, but after more treatment, a routine mri showed it had disappeared. However, his last mri, earlier this month, showed it had come back really aggressively, and there is no treatment for it. Her little boy was put on hospice and given 1-2 months to live. I think it took me about a half hour to read the page long post because I was crying so hard.
Since Miles was diagnosed with CHD, we've known that there is that possibility that he wouldn't always be with us. Shone's kids do not have super great life expectancies. Thankfully, Miles' condition has not progressed (negatively) much at all since his initial OHS. For a Shone's baby, he is relatively healthy. Still, Ben and I have had a lot of talks that parents don't want to have, planning for what ifs and what thens. It's never been easy, but it's been manageable....at this point anyway. I can't imagine being told that my child has only a certain amount of time left to live. What would you do? I can't think of anything worse.
When I read my friend's post, she was happy. They had been in Legoland and Disneyland, I think a last big family trip. She didn't talk about her son's sickness or how much she was going to miss him. She just wrote about the fun time they were having and the silly things her little boy had done that day. I really admire her for her attitude and bravery. I know I couldn't do that. My heart goes out to her.
I am so grateful for my boys and for their health. When I hear things like that, it makes those little things like dumping out all of the toy bins or spraying Capri Suns all over the house seem pretty insignificant. I love my babies!
Since Miles was diagnosed with CHD, we've known that there is that possibility that he wouldn't always be with us. Shone's kids do not have super great life expectancies. Thankfully, Miles' condition has not progressed (negatively) much at all since his initial OHS. For a Shone's baby, he is relatively healthy. Still, Ben and I have had a lot of talks that parents don't want to have, planning for what ifs and what thens. It's never been easy, but it's been manageable....at this point anyway. I can't imagine being told that my child has only a certain amount of time left to live. What would you do? I can't think of anything worse.
When I read my friend's post, she was happy. They had been in Legoland and Disneyland, I think a last big family trip. She didn't talk about her son's sickness or how much she was going to miss him. She just wrote about the fun time they were having and the silly things her little boy had done that day. I really admire her for her attitude and bravery. I know I couldn't do that. My heart goes out to her.
I am so grateful for my boys and for their health. When I hear things like that, it makes those little things like dumping out all of the toy bins or spraying Capri Suns all over the house seem pretty insignificant. I love my babies!
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