Tuesday, March 29, 2011
Another Month Full of Doctor's Visits
It's been a busy month as far as medical visits are concerned, and we still have quite a few scheduled that we have yet to attend. We've all been sick here and there, but the majority of the appointments have just been check-ups and those visits for the little things that have been bothering you for a long time but you just procrastinate scheduling. Yesterday was Conan's 9 month well-child check-up. I love those because I always forget that there are no co-pays for preventative visits, so it's like a special treat when I get reminded at the window. When I got Coney undressed, everybody commented on what a big chubby boy he was, and he is. Surprisingly, he was only in the 25% for weight and 10% for height. Still, he is 2 1/2 times as fat as tall, but he just seems so much bigger to me. When compared to other babies his age, he doesn't seem small to me. In fact, when Dr. Ditty saw the numbers, he first thought a mistake was made, but the measurements were right. He's just short and round. Everything looks good for Coney. We still have to keep on top of his eczema and have to pay attention to what food we give him because of his allergies, but all in all, he is healthy. Fat and healthy. Conan's motor skills seemed to be a little behind what I remember Miles' being at that time, but he's finally starting to do stuff. He doesn't crawl, but he's rolling all over the place. I know if I put him on a bed at all, he'll just be on the floor within a couple of minutes. He's also started pulling himself up on his knees. I usually find him up on his knees, peeking over the edge of his crib, after his naps or in the morning. It's very cute. He's not too in to standing, but I'm hoping that the kneeling will turn into him standing while holding onto something. That's always a nice ability to have while in church. Just let him stand on the bench and let the people behind us entertain him. :) Conan's also gotten pretty good with his hands the past week or so. He loves to sit on the floor of his bedroom and play with toys. And he loves finding whatever he can reach and stick it in his mouth. That's a pretty awful thing most of the time, but it is nice that he can feed himself snacks. Now, I just have to find some snacks that he's not allergic to. So, me, I'm pretty much just falling apart. Seriously, you would think I was 65. I went in to the doctor last week to talk to him about some knee problems that I've been having. He asked if I'd injured my knee. I said no. He asked if I was athletic or if I did a lot of sports when I was younger. I laughed and then said no. I just have unexplained pain in my right knee. It's intermittent and seems to get worse when it's stormy. When it hurts, it's sometime bad enough that I basically can't use my stairs. My doctor told me that I sounded like an old person. Yes. Yes, I do. He checked my ligaments, and they were good, so he did some lab work and referred me to an orthopedic. I went to the orthopedic, and they started with some x-rays. The doctor (who may I add was probably younger than I--that feels weird) brought the x-ray in and explained the problem, that was pretty evident on the film. Apparently, my right knee cap doesn't fit into the joint correctly. It's kind of off to the side. He said that this happens sometimes when a person has stronger muscles on the outside of the leg but the inside is weaker. Anyway, for now, all I need to do is take some anti-inflammatory medication when needed and go the physical therapy. I go on Thursday, I think. It's not something that I have to do regularly, just once or twice to learn some exercises to help remedy my situation. Hopefully, that's all it will take. If that doesn't do it, then they'll try some injections, and if that still doesn't take care of it, then they'd do surgery, but it's really unlikely that would ever be necessary. That was old person issue number one. I went to take care of number two today. In my old age, my snoring has gotten a little out of hand, and I'm not getting a good sleep, and Ben's not getting any sleep. I went to get checked out by the ENT today to see if there was something I could do. I thought that I'd maybe need my tonsils or adenoids removed, but the ENT said that they didn't look quite bad enough to necessitate removal. However, he said that my nasal septum is super super crooked, so much so that he didn't suggest surgery, he just started telling me what would happen during the surgery that he was going to do. So, I'll have that done, I think it's the first Friday in May. I don't think it's too big of a deal. The surgery itself takes about a half hour, but I do have to be totally put out for it, and I'm not sure what recovery is like. Dr. Ventura said that he usually splints the nose after surgery and packs it, and apparently, that's a pretty unpleasant thing. The receptionist that scheduled me asked if I'd prefer morning or afternoon for my follow-up the Monday following the surgery. Before I could answer, she told me that usually, even if people scheduled for afternoon, they'd call and see if they could get in earlier because the packing was so uncomfortable, so that sounds like all sorts of fun. I'm sure it will be just fine. The only concern that I have is that my nose will look different afterward. Dr. Ventura said that it shouldn't affect the shape of my nose, and I really hope that it doesn't because that is the one part of my body that I don't want to change the appearance of. I am super excited to not snore though. I was told that the first thing that people say after this surgery is how much better their sleep is afterward. Oh, how I look forward to that! While I was there, I mentioned to him that my hearing was starting to not be the best, old person issue number three. It's not anything too concerning, but I do have a little bit of a hard time focusing on a sound when there is a lot of background noise. I'm doing a lot of, "What was that?" and "Say that again". It's especially bad in the car, and I know that it really annoys Ben. He hates repeating himself. I've also been hearing a lot of ringing in my ears. I know that that isn't a normal thing, but I hadn't even thought about it until the doctor asked if I'd had ringing. Anyway, Ben and I both thought that I should just go in because I probably needed to have my ear canals cleaned out. No such luck. Dr. Ventura said that they are completely clear, so he's having me go in to the audiologist next week for some testing. In the meantime, I'm trying to pay attention to sounds and see if one ear hears better than the other. It really is getting annoying, but maybe this is just what happens the older you get. Lastly, I have to make an appointment with the optometrist. While I was sitting in the waiting room for Coney's appointment, I was grabbed a magazine to read. I opened it, and I honestly could not read it at all. It was like the words were jumping off the page. It was so weird. I felt like I had 3-d glasses on, and I still kind of do while I'm typing this. I think I haven't noticed how bad my eyes have gotten because I honestly never read. I may actually start having to wear my glasses. It's probably about time we all had eye appointments. I think it's been over a year anyway. Ben's been kind of sick lately too, but he hates to discuss his health issues, so I don't know if he's sick or good or what. He does have a doctor's appointment next week though, so he must need some sort of doctor's assistance, but I will leave it at that since I know nothing. The big appointment is a week from Friday. That is Miles' echo. I've been killing myself with "what ifs" for the past 3 weeks, and I honestly don't know if I can make it another week and a half. I will make a serious effort though. I've been noticing Miles' symptoms a lot since his cardiology appointment, and it seems like everywhere I go heart failure is popping out at me. Whether it be a random article or commercial or billboard, I'm noticing little things everywhere. I was even at a Relief Society enrichment night the other week, and my friend gave a lesson that included a faith-promoting story about a valve replacement. I keep running into checklists and "5 signs of heart failure", and I hate that I can relate all of those checkpoints and signs to Miles. Right now, I just expect that he is suffering from Mitral Valve Stenosis or Prolapse or Regurgitation. I don't know what I'll do with myself if the echo turns out normal. Until that happens, I'll probably just keep researching valve repair and replacement, reading about how to prepare a child for a major surgery, making lists in my head to plan for potential time in the hospital and get teary-eyed thinking about all the things that might be wrong. Oh, curse you neurotic mind and excessive emotions. I don't know if I'll really have anything to post for the next week, but definitely stay tuned for the echo update.
Friday, March 11, 2011
And We're Still Going
I just sat down in bed to relax for the first time today, and I thought to myself, "I don't remember waking up this morning." Then I realized why. I didn't go to sleep last night. True story. Ben went in to work some overtime late last night. I opened the computer right after he left, a little before eleven and saw the breaking news of the earthquake in Japan. I thought that the report of 8.9 must have been a mistake because I had been watching tv, and their hadn't been any news interruptions. The local news had just ended, so I turned to CNN and became glued to the tv. What a horrific thing! My heart aches for all of those who are affected by the earthquakes and tsunamis. I am amazed though at how little damage was done in Tokyo (all things considered) and at how prepared they were. I definitely think that we could all learn a lesson from the Japanese.
I watched CNN until Ben got home at 4am. We watched a little more together then watched the entire recorded Thursday night lineup. By the time that was all over, it was morning and kids were awake.
After a very noisy night, Miles seems to be doing well. Coney is still really congested though, so I decided I better take him in. If Miles had strep, I at least wanted to get Coney tested, so he could get on antibiotics if necessary. For once, the symptoms did not disappear the second that I walked into the doctor's office. In fact, Conan hadn't had a fever until we got to the doctor's office. Plus, he had a hacking cough to prove his sickness with. After Dr. Ditty examined him and did some tests, he determined that Conan does not have either strep or pneumonia like brother. He has an upper respiratory infection. Unfortunately, there's not too much to do for that. They did give Coney his first breathing treatment. He's had albuterol via inhaler, but this was his first, first-hand experience with a nebulizer. He was actually really good at it. They didn't use the mask. Rather, I think the goal was just the blow by method. That's basically just the adult method with the far end of the tubing plugged. Conan held the percolator himself and even kept the mouthpiece in his mouth. What a smart baby! The treatment did improve things immediately. He's asleep now though, and he's not sounding so good. When he wakes up maybe I'll try another treatment.
As I was about to leave the doctor's office, Dr. Ditty said, "Hey, you have my cell phone number, don't you?" I didn't know that mom's could have doctors' cell phone numbers. That sounds like the best day ever for me and a giant mistake for Dr. Ditty. I'm already paranoid about my children's' health. Now I have their doctor at my disposal all the time. Just kidding. I'll be nice. I think that he made sure that I had it since we're going into the weekend, and I think that he knows that I don't feel entirely comfortable with other doctors that aren't well-versed in my children's' health problems. He knows what it up, and he knows that we've been burned by doctors that just don't get it. Anyway, he told me to give him a call if things get worse with either baby. And "tell Miles hi for me". What a nice guy.
Well, I think it's time for me to finally go to sleep. It's been a while.
I watched CNN until Ben got home at 4am. We watched a little more together then watched the entire recorded Thursday night lineup. By the time that was all over, it was morning and kids were awake.
After a very noisy night, Miles seems to be doing well. Coney is still really congested though, so I decided I better take him in. If Miles had strep, I at least wanted to get Coney tested, so he could get on antibiotics if necessary. For once, the symptoms did not disappear the second that I walked into the doctor's office. In fact, Conan hadn't had a fever until we got to the doctor's office. Plus, he had a hacking cough to prove his sickness with. After Dr. Ditty examined him and did some tests, he determined that Conan does not have either strep or pneumonia like brother. He has an upper respiratory infection. Unfortunately, there's not too much to do for that. They did give Coney his first breathing treatment. He's had albuterol via inhaler, but this was his first, first-hand experience with a nebulizer. He was actually really good at it. They didn't use the mask. Rather, I think the goal was just the blow by method. That's basically just the adult method with the far end of the tubing plugged. Conan held the percolator himself and even kept the mouthpiece in his mouth. What a smart baby! The treatment did improve things immediately. He's asleep now though, and he's not sounding so good. When he wakes up maybe I'll try another treatment.
As I was about to leave the doctor's office, Dr. Ditty said, "Hey, you have my cell phone number, don't you?" I didn't know that mom's could have doctors' cell phone numbers. That sounds like the best day ever for me and a giant mistake for Dr. Ditty. I'm already paranoid about my children's' health. Now I have their doctor at my disposal all the time. Just kidding. I'll be nice. I think that he made sure that I had it since we're going into the weekend, and I think that he knows that I don't feel entirely comfortable with other doctors that aren't well-versed in my children's' health problems. He knows what it up, and he knows that we've been burned by doctors that just don't get it. Anyway, he told me to give him a call if things get worse with either baby. And "tell Miles hi for me". What a nice guy.
Well, I think it's time for me to finally go to sleep. It's been a while.
Thursday, March 10, 2011
I have to remind myself all the time that my child is not the only one with serious health problems. I get so frustrated when his issues don't take top priority because I feel like they should. Deep inside, I think that I do feel like he'll be just fine waiting the four weeks, but I just don't feel like he should have to. I can't stop wondering about it, and I just want it done. Man, this is going to be a really long four weeks. I really need something else to concentrate my thoughts on.
I had a pretty strange experience today. Actually, I don't know if strange is the right word. Let's just say it was probably really beneficial for all involved that I was in a good mood otherwise because it had the potential to be a completely maddening experience. After days of argument, I finally conceded and agreed to take Ben's car in to get inspected and registered. The registration had expired in February. Even though they charge more, I took it to Jiffy Lube because they can actually print the stickers on site, and I just wanted to get it all done. I had some errands to run inside of Walmart, and they share a parking lot with Jiffy Lube, so I just dropped the car off and walked over. I had some business to do at my bank, which is inside of Walmart. I used to work at that bank, so I also took the time to visit with one of my friends who is still there. Then I picked up a few things for craft night. I wasn't there long, but I did take my time. When I got back to Jiffy Lube, I paid for the service and somehow got into a conversation with one of the guys about a tattoo that the drummer for Motley Crue (which would be Tommy Lee, and that seems a little odd) for a few minutes, but that really has nothing to do with the story other than to take time. When it was time to leave, a guy pointed to some keys as if to ask, "these yours?" I nodded my head no. He pointed to another. Another nod, no. Not good. Those were the only two sets of keys there. Everyone kind of got a weird look on their faces, and one guy said, "Well, maybe Dustin left them in the car. Why don't you go check." That didn't sound very reassuring. Why didn't they just ask Dustin what he did with them? I'll tell you why--because Dustin went home. To West Jordan. Of course, my keys were not in my car because they were in Dustin's pocket. At home. In West Jordan. Just a reminder, I live in Tooele. That's 45 mins. away, on a good day. They called Dustin and told him to get back. I called Ben to bring me another set of keys, so I wouldn't have to wait. I'm sure that he wasn't thrilled since he was at home with two, undressed, sleeping, sick children. Surprisingly, Dustin pulled into the parking lot just before Ben did. Also, surprisingly....or maybe not, he offered no apology or even the decency of delivering the keys to me himself. I did, however, get a free oil change for a future visit. I guess that's something.
I had a pretty strange experience today. Actually, I don't know if strange is the right word. Let's just say it was probably really beneficial for all involved that I was in a good mood otherwise because it had the potential to be a completely maddening experience. After days of argument, I finally conceded and agreed to take Ben's car in to get inspected and registered. The registration had expired in February. Even though they charge more, I took it to Jiffy Lube because they can actually print the stickers on site, and I just wanted to get it all done. I had some errands to run inside of Walmart, and they share a parking lot with Jiffy Lube, so I just dropped the car off and walked over. I had some business to do at my bank, which is inside of Walmart. I used to work at that bank, so I also took the time to visit with one of my friends who is still there. Then I picked up a few things for craft night. I wasn't there long, but I did take my time. When I got back to Jiffy Lube, I paid for the service and somehow got into a conversation with one of the guys about a tattoo that the drummer for Motley Crue (which would be Tommy Lee, and that seems a little odd) for a few minutes, but that really has nothing to do with the story other than to take time. When it was time to leave, a guy pointed to some keys as if to ask, "these yours?" I nodded my head no. He pointed to another. Another nod, no. Not good. Those were the only two sets of keys there. Everyone kind of got a weird look on their faces, and one guy said, "Well, maybe Dustin left them in the car. Why don't you go check." That didn't sound very reassuring. Why didn't they just ask Dustin what he did with them? I'll tell you why--because Dustin went home. To West Jordan. Of course, my keys were not in my car because they were in Dustin's pocket. At home. In West Jordan. Just a reminder, I live in Tooele. That's 45 mins. away, on a good day. They called Dustin and told him to get back. I called Ben to bring me another set of keys, so I wouldn't have to wait. I'm sure that he wasn't thrilled since he was at home with two, undressed, sleeping, sick children. Surprisingly, Dustin pulled into the parking lot just before Ben did. Also, surprisingly....or maybe not, he offered no apology or even the decency of delivering the keys to me himself. I did, however, get a free oil change for a future visit. I guess that's something.
Wednesday, March 9, 2011
Not Too Much New Today
Things are moving along as normal. I think that everyone is about where I would have expected them to be after yesterday. Miles has been playing all day but sounds like a freight truck right now as he sleeps. It sounds so painful. I feel bad for him. Conan has been a little irritable and has had some pretty bad diarrhea. And my head still feels like it's going to explode. Yeah, I think we're right where we should be.
Unfortunately, pulling mommy rank didn't work. I thought that maybe if I pestered cardiology enough with my concern about the four week wait for Miles' echo, we'd get it moved up a bit. Worked with his surgery. Sadly, the call back that I got today was to tell me that the 4 week wait after having pneumonia could not be negotiated. For safety reasons, sedation will not budge on this one, and Dr. Puchalski said that the wait would be just fine. Nuts! (that's what I'm going to go over the next month)
Hopefully, we're all in a little better health tomorrow. My house is a disaster since I haven't done a thing the past two days. I predict that Miles and I might be improved, Conan will probably be a little worse and Ben will begin his sickness. Let's see how clairvoyant I am, shall we?
Unfortunately, pulling mommy rank didn't work. I thought that maybe if I pestered cardiology enough with my concern about the four week wait for Miles' echo, we'd get it moved up a bit. Worked with his surgery. Sadly, the call back that I got today was to tell me that the 4 week wait after having pneumonia could not be negotiated. For safety reasons, sedation will not budge on this one, and Dr. Puchalski said that the wait would be just fine. Nuts! (that's what I'm going to go over the next month)
Hopefully, we're all in a little better health tomorrow. My house is a disaster since I haven't done a thing the past two days. I predict that Miles and I might be improved, Conan will probably be a little worse and Ben will begin his sickness. Let's see how clairvoyant I am, shall we?
Tuesday, March 8, 2011
Part 2
Just wanted to let you all know that Conan just showered me (literally every inch of body) and his bedroom carpet in vomit. And I just cried a little bit because I want brownies, and I only have one egg. It's a good day. Good day...
One Day Without Sickness Would be Awesome
Seriously!? We can't have just one day? I always get a little leery when things seem to fall into place too easily. Call me a pessimist, but I always assume that something will happen to debunk just about anything that I get too excited for. Now I'm not saying that I was excited for Miles' echo, but I was looking forward to the possibility of answers. And the sooner the better. Getting in same week is not something that is easy to do, and I even got a time that Ben could join us without taking time off work, almost unheard of. Of course it was because it's not going to happen now.
I had a feeling when Miles was acting so staid during his cardiology appointment yesterday that something was up. I chalked it up to the early hour (we had to be there at 8:15am), and put it in the back of my mind. When we returned home at about 1:00 yesterday afternoon, Miles went straight to bed. While he slept, his breathing quicken, he became very hot and his heart was beating rapidly, which doesn't necessarily mean anything for Miles, but I could tell he was sick. Every hour or so I'd take his temperature. It generally read between 100 and 102 but did get up to 104 in the middle of the night, so I took him into his doctor late this morning. Miles seemed much better, but I wanted to do everything possible to make sure that we kept our appointment on Thursday.
At first, Dr. Ditty thought that it was nothing serious. He'd seen a ton of flu, so he did a swab (it was negative). He started listening to his lungs and immediately said, "His lungs are sounding great." He spoke a little too soon though because when he changed the position of his stethoscope his face kind of changed, and he said, "Uh oh, I'm hearing rattling in his upper right (weird, it's usually the left) lung. I think he's got pneumonia." So, we headed over to radiology and got a quick x-ray. When we returned, Dr. Ditty was actually gone to his own doctor's appointment, so Dr. Haroutunian (the chief of medicine at the hospital out here--not saying much-- and Miles' actual pediatrician--don't love him though) took a quick look at Miles and the x-ray results. According to him, he didn't think that there was any indication of pneumonia, but he was concerned with how high Miles temperature had gotten. He decided to run a strep test, despite there being no really strong indications, but it was a good thing because it came back positive.
I was concerned about this because since Miles is a little kid that like to squirm around, he has to be completely put under for echocardiograms. There are certain medications that have to be avoided when being sedated and in general, you can't be sick. I talked to Dr. H about this, and he said that there shouldn't be any issue with the antibiotics, and that in his opinion, unless his symptoms weren't improving, he'd be just fine to keep the echo appointment for Thursday. I had talked to sedation this morning, and I told them that I would call after his appointment to let them know if we needed to reschedule. I explained that Miles was being treated for strep, but he'd have been on antibiotics for more than 48 hours by the appointment. They told me that as long as he was breathing okay and wasn't too congested, he should be okay to continue with the echo. There would, of course, always be the possibility that after the doctor administering the sedative examined him, that he could be sent home. I was willing to take that risk.
So, I gave Miles his amoxycilin, fed him some lunch (since he's eaten almost nothing in the past 24 hours and has lost 2 lbs. in the past week) and he went back to bed. Unfortunately, just as Ben was leaving for work I got a call. "Hey, Stephanie, it's Bryan..." Who? What Bryan do I know with a 435 number? Ah, crap! It's Dr. Ditty. "Hey, I just spoke with radiology, and they did read the x-rays as pneumonia. I talked to Dr. H, and he hadn't heard the rattling when he listened to miles, but Ii definitely did, and radiologist read pneumonitis and pneumonia in the upper right lung where I heard it. The antibiotic that he prescribed for the strep should take care of it. I'm sorry, but you really need to call Primary's and reschedule that echo." And this is why I don't trust good easy things...
I called sedation back and spoke with the same woman that I had originally spoken with early this morning. She was very nice and sympathetic, but she did assure me that I would definitely have to reschedule. Not only that. Protocol dictates that I have to wait 4 weeks following the disappearance of symptoms. A month. We have to wait another month. I can't be thinking about this for a month. Sedation transferred me to cardiology to set the new appointment, and we scheduled it for April 8th. I asked the receptionist to please leave a note for Dr. Puchalski about the situation because I was under the impression that this was something that he wanted done soon.
When Miles went to the hospital unexpectedly for breathing difficulties prior to his surgery, we ran into the same problem. They wanted us to wait at least 6 weeks before they would do the surgery following his discharge. The problem was his surgery was scheduled for 3 days later. I was super upset about the idea of waiting another month and a half, especially because Dr. Puchalsi had said at the initial diagnosis, "Your son has pretty serious heart disease and is going to require heart surgery within a couple of weeks." We had already waited a couple of weeks. I didn't know if we even could wait another 6. I called cardiology and explained the dilemma. Dr. Puchalski wasn't in, but i was so impressed that another cadiologist called me back, himself within about a half hour. He sat on the phone with me for a good 15 minutes. He told me that he had reviewed Miles' charts, as well as all of the notes from his hospital stay. He told me that he could find no reason to delay the surgery 6 weeks, that he had already spoken to anesthesiology, and we'd be able to go ahead with the surgery in a week and a half. That is why I love Primary Children's. Miles wasn't even his patient, but this doctor took the time to thoroughly review his case, call me and spend considerable time talking to me then pull strings to accommodate us.
I'm hoping that if Dr. Puchalski knows about what is going on, maybe he'll so something similar. I don't know though. Maybe the immediacy of this echo isn't nearly as important as I feel like it is. Maybe 4 weeks is just fine. What I really wish would happen is that Dr. Puchalski would see that Miles has pneumonia and have us come in right now, so he could examine him, himself. If Miles really does have mitral valve stenosis, I think that he is frequently misdiagnosed with pneumonia (or it's the cause) because fluid is seen in the lungs, when it's actually blood that is leaking in. I guess the problem this time is that it's in the wrong lung. Anyway, I have more than doubts that that will ever happen. I think, more likely, we will wait 4 weeks, and have the echo.....assuming that he is not sick again in 4 weeks. And that's a pretty big assumption.
This is all so frustrating and discouraging. i just want one day of healthiness and maybe a few answers. I'm so tired. Plus, what is wrong with my family? I'm just going to assume, now, that anytime anyone is sick, among whatever other ailment, they have strep. The other week Coney had strep and influenza. Right now miles has strep and pneumonia. When I was little I had strep and the chicken pox, then when I was a little older, I had strep and pneumonia (which made me miss the auditions for my school play which ruined the rest of the year). Can't we just all have something removed or something, so we don't keep getting strep? Maybe we could have antibiotics added to our drinking water? I don't know, but this is getting ridiculous, and I just know that I'm going to wake up with a sore throat tomorrow.
I had a feeling when Miles was acting so staid during his cardiology appointment yesterday that something was up. I chalked it up to the early hour (we had to be there at 8:15am), and put it in the back of my mind. When we returned home at about 1:00 yesterday afternoon, Miles went straight to bed. While he slept, his breathing quicken, he became very hot and his heart was beating rapidly, which doesn't necessarily mean anything for Miles, but I could tell he was sick. Every hour or so I'd take his temperature. It generally read between 100 and 102 but did get up to 104 in the middle of the night, so I took him into his doctor late this morning. Miles seemed much better, but I wanted to do everything possible to make sure that we kept our appointment on Thursday.
At first, Dr. Ditty thought that it was nothing serious. He'd seen a ton of flu, so he did a swab (it was negative). He started listening to his lungs and immediately said, "His lungs are sounding great." He spoke a little too soon though because when he changed the position of his stethoscope his face kind of changed, and he said, "Uh oh, I'm hearing rattling in his upper right (weird, it's usually the left) lung. I think he's got pneumonia." So, we headed over to radiology and got a quick x-ray. When we returned, Dr. Ditty was actually gone to his own doctor's appointment, so Dr. Haroutunian (the chief of medicine at the hospital out here--not saying much-- and Miles' actual pediatrician--don't love him though) took a quick look at Miles and the x-ray results. According to him, he didn't think that there was any indication of pneumonia, but he was concerned with how high Miles temperature had gotten. He decided to run a strep test, despite there being no really strong indications, but it was a good thing because it came back positive.
I was concerned about this because since Miles is a little kid that like to squirm around, he has to be completely put under for echocardiograms. There are certain medications that have to be avoided when being sedated and in general, you can't be sick. I talked to Dr. H about this, and he said that there shouldn't be any issue with the antibiotics, and that in his opinion, unless his symptoms weren't improving, he'd be just fine to keep the echo appointment for Thursday. I had talked to sedation this morning, and I told them that I would call after his appointment to let them know if we needed to reschedule. I explained that Miles was being treated for strep, but he'd have been on antibiotics for more than 48 hours by the appointment. They told me that as long as he was breathing okay and wasn't too congested, he should be okay to continue with the echo. There would, of course, always be the possibility that after the doctor administering the sedative examined him, that he could be sent home. I was willing to take that risk.
So, I gave Miles his amoxycilin, fed him some lunch (since he's eaten almost nothing in the past 24 hours and has lost 2 lbs. in the past week) and he went back to bed. Unfortunately, just as Ben was leaving for work I got a call. "Hey, Stephanie, it's Bryan..." Who? What Bryan do I know with a 435 number? Ah, crap! It's Dr. Ditty. "Hey, I just spoke with radiology, and they did read the x-rays as pneumonia. I talked to Dr. H, and he hadn't heard the rattling when he listened to miles, but Ii definitely did, and radiologist read pneumonitis and pneumonia in the upper right lung where I heard it. The antibiotic that he prescribed for the strep should take care of it. I'm sorry, but you really need to call Primary's and reschedule that echo." And this is why I don't trust good easy things...
I called sedation back and spoke with the same woman that I had originally spoken with early this morning. She was very nice and sympathetic, but she did assure me that I would definitely have to reschedule. Not only that. Protocol dictates that I have to wait 4 weeks following the disappearance of symptoms. A month. We have to wait another month. I can't be thinking about this for a month. Sedation transferred me to cardiology to set the new appointment, and we scheduled it for April 8th. I asked the receptionist to please leave a note for Dr. Puchalski about the situation because I was under the impression that this was something that he wanted done soon.
When Miles went to the hospital unexpectedly for breathing difficulties prior to his surgery, we ran into the same problem. They wanted us to wait at least 6 weeks before they would do the surgery following his discharge. The problem was his surgery was scheduled for 3 days later. I was super upset about the idea of waiting another month and a half, especially because Dr. Puchalsi had said at the initial diagnosis, "Your son has pretty serious heart disease and is going to require heart surgery within a couple of weeks." We had already waited a couple of weeks. I didn't know if we even could wait another 6. I called cardiology and explained the dilemma. Dr. Puchalski wasn't in, but i was so impressed that another cadiologist called me back, himself within about a half hour. He sat on the phone with me for a good 15 minutes. He told me that he had reviewed Miles' charts, as well as all of the notes from his hospital stay. He told me that he could find no reason to delay the surgery 6 weeks, that he had already spoken to anesthesiology, and we'd be able to go ahead with the surgery in a week and a half. That is why I love Primary Children's. Miles wasn't even his patient, but this doctor took the time to thoroughly review his case, call me and spend considerable time talking to me then pull strings to accommodate us.
I'm hoping that if Dr. Puchalski knows about what is going on, maybe he'll so something similar. I don't know though. Maybe the immediacy of this echo isn't nearly as important as I feel like it is. Maybe 4 weeks is just fine. What I really wish would happen is that Dr. Puchalski would see that Miles has pneumonia and have us come in right now, so he could examine him, himself. If Miles really does have mitral valve stenosis, I think that he is frequently misdiagnosed with pneumonia (or it's the cause) because fluid is seen in the lungs, when it's actually blood that is leaking in. I guess the problem this time is that it's in the wrong lung. Anyway, I have more than doubts that that will ever happen. I think, more likely, we will wait 4 weeks, and have the echo.....assuming that he is not sick again in 4 weeks. And that's a pretty big assumption.
This is all so frustrating and discouraging. i just want one day of healthiness and maybe a few answers. I'm so tired. Plus, what is wrong with my family? I'm just going to assume, now, that anytime anyone is sick, among whatever other ailment, they have strep. The other week Coney had strep and influenza. Right now miles has strep and pneumonia. When I was little I had strep and the chicken pox, then when I was a little older, I had strep and pneumonia (which made me miss the auditions for my school play which ruined the rest of the year). Can't we just all have something removed or something, so we don't keep getting strep? Maybe we could have antibiotics added to our drinking water? I don't know, but this is getting ridiculous, and I just know that I'm going to wake up with a sore throat tomorrow.
Monday, March 7, 2011
Annual Cardiology Appointment
We made our long awaited, about a year, trip to the cardiologist today. We got up bright and shiny to make our 8:30am appointment. I think that scheduling that early is just cruel. Luckily, we had to go to my parents' house yesterday for Tami and my mom's birthday dinner, so the kids and I just stayed over. It also worked out nicely because then my mom could come to the appointment too and wrangle Conan while I attempted to listen to the doctor.
Everything was pretty standard. The nurse started by taking his blood pressure, which as always, took a few tries. It was about where it should have been though. The numbers were about reversed from pre-surgery, so that's good, I guess. She did a quick EKG, and I have no idea what it said, but nobody said anything about it, so I guess that's also good.
Dr. Puchalski came in, and the first thing out of his mouth was, "So what's up with all of the asthma?" I don't know. He has asthma. Then, "All the times you were hospitalized, where was that?" Well, all but one time, we were at Primary. I always made sure to tell the treating doctors about Miles' situation, and they always had said that they would inform cardiology. Dr. Puchalski said that what most likely happened was that they would send a note to inform that a patient was admitted for something unrelated but was doing well, so it probably would never make it to him. I will make sure that in the future I let them know that Miles' cadiologist has requested to notified with details that Miles is there. I think that on both my part and the hospital's part, we've probably been a little more concerned about notifying the pulmonologist rather than the cardiologist since it is breathing problems that he's always admitted for.
Anyhow, Dr. Puchalski does think that the breathing difficulties could be related to the Shone's syndrome. In his words, "Lightning does strike twice," meaning, I think, that having unrelated breathing problems could be a second strike. He continued to basically say that he wasn't going to ignore something that could very possibly be a real problem. He said that he definitely thought that we needed to do an echocardiogram, so that he could look at things.
He listened to Miles thoroughly and said that his heart SOUNDED great. Where his coarc was repaired, it sounded just as it should. His murmur sounded just as expected. However, he said that, even then, he could hear Miles wheezing in both front and in back. I've learned something throughout this that I had never realized having asthma myself. Asthma has a very specific wheez. It has something to do with the inhalation or exhalation. I wish I could remember exactly. The point is, Miles does have that, meaning that he does have asthma. He has more though that goes along with it that is not asthma. That's what we've been working with the pulmonologist and ent dept to try to figure out. I think that was what Dr. Puchalski was referring to when he said that.
Shone's Syndrome is characterized by 4 or more abnormalities, basically blockages in the left side of the heart. We've already taken care of the aortic coarctation (narrowing of the aorta--massive, massive narrowing in Miles' case). There were some slight abnormalities with his mitral valve (the valve that separates the left atrium from the left ventricle), but they were very minute. It is Dr. Puchalski's thinking that, if I understand correctly, that the mitral valve is not functioning properly, thickening and not allowing the blood to flow out of the upper left chamber of the heart. The blood gets backed up and leaks into the left lung causing it to be inflamed. I believe that what he was describing is mitral valve stenosis, but I don't remember him actually using that phrase. I have a hard time really concentrating on what the doctor's saying though, so he may have. I did go out and buy a couple of planners this afternoon, so I can record instructions for both of the babies. Believe it or not, this all makes a lot of sense to me (assuming that I interpreted things correctly). Doctor's always think that Miles has pneumonia because his left lungs rattles constantly. When he is given x-rays, his left lung always shows slightly cloudy but doesn't really show pneumonia. To date, the thought was that an underdeveloped swallow reflex was allowing liquid into his lungs, and that would inflame them. I think that this scenario makes much more sense. I've always felt like his breathing problems were related to his heart problems, and it's kind of nice to have that validated.......even though it pretty much sucks at the same time.
What Dr. Puchalski was describing wouldn't really be able to be heard through a stethoscope, so, as before mentioned, he ordered an echocardiogram, so he could actually look at his mitral valve. He said that he may even go as far as to order a cardiac catheter. I interpret that to mean, "if I cannot see what I assume is causing the problem with the echo, we'll do a cath to really make sure it's not happening". He sounds pretty serious about this all.
Dr. Puchalski did not give any idea of possible treatment. I think that that was probably intentional since we don't know if this is even a problem yet. Why worry about something prematurely. I would assume that if this is the problem, depending upon the severity, another heart surgery would be in order. I think in mild cases, this is treated with medication, but from what I've read, that's typically in adults. I don't know about small children. I think it would be more likely, that they would try to do a valve repair or replacement. Again, I have absolutely no idea. This is all just speculation.
Of course I always have concern for my baby, but right now, I feel pretty positive about everything. I do not doubt that this may be partially to blame for Miles' respiratory problems, but in a way, I think that that's a good thing. We've expected, from the beginning, that Miles' heart problems would worsen, requiring more surgeries. It's hard playing the waiting game. I would rather something be found now, at a regular cardiology visit, than have something terrible and unexpected happen in the future because I didn't realize that things were getting worse. So, I look at it this way: either Miles is suffering from mitral valve stenosis, we'll do what we can to correct it and his breathing improves-- or his mitral valve is fine, and we won't have to have surgery right away. Win. Win.
We'll know more on Thursday. We're taking Miles in for a sedated echo (echocardiogram with full sedation is pretty typical for little guys that can't hold still) at 2:30. I was instructed to make sure that Dr. Puchalski was there, so he could review the results and talk to us about further testing or treatment or whatever. I will try to get some blogging in that night, but I'm not promising anything. That's a pretty late appointment, and those things are so stinking long and tiring. I may just not feel like doing it. I'll get it in there sometime though, so stay tuned......
Everything was pretty standard. The nurse started by taking his blood pressure, which as always, took a few tries. It was about where it should have been though. The numbers were about reversed from pre-surgery, so that's good, I guess. She did a quick EKG, and I have no idea what it said, but nobody said anything about it, so I guess that's also good.
Dr. Puchalski came in, and the first thing out of his mouth was, "So what's up with all of the asthma?" I don't know. He has asthma. Then, "All the times you were hospitalized, where was that?" Well, all but one time, we were at Primary. I always made sure to tell the treating doctors about Miles' situation, and they always had said that they would inform cardiology. Dr. Puchalski said that what most likely happened was that they would send a note to inform that a patient was admitted for something unrelated but was doing well, so it probably would never make it to him. I will make sure that in the future I let them know that Miles' cadiologist has requested to notified with details that Miles is there. I think that on both my part and the hospital's part, we've probably been a little more concerned about notifying the pulmonologist rather than the cardiologist since it is breathing problems that he's always admitted for.
Anyhow, Dr. Puchalski does think that the breathing difficulties could be related to the Shone's syndrome. In his words, "Lightning does strike twice," meaning, I think, that having unrelated breathing problems could be a second strike. He continued to basically say that he wasn't going to ignore something that could very possibly be a real problem. He said that he definitely thought that we needed to do an echocardiogram, so that he could look at things.
He listened to Miles thoroughly and said that his heart SOUNDED great. Where his coarc was repaired, it sounded just as it should. His murmur sounded just as expected. However, he said that, even then, he could hear Miles wheezing in both front and in back. I've learned something throughout this that I had never realized having asthma myself. Asthma has a very specific wheez. It has something to do with the inhalation or exhalation. I wish I could remember exactly. The point is, Miles does have that, meaning that he does have asthma. He has more though that goes along with it that is not asthma. That's what we've been working with the pulmonologist and ent dept to try to figure out. I think that was what Dr. Puchalski was referring to when he said that.
Shone's Syndrome is characterized by 4 or more abnormalities, basically blockages in the left side of the heart. We've already taken care of the aortic coarctation (narrowing of the aorta--massive, massive narrowing in Miles' case). There were some slight abnormalities with his mitral valve (the valve that separates the left atrium from the left ventricle), but they were very minute. It is Dr. Puchalski's thinking that, if I understand correctly, that the mitral valve is not functioning properly, thickening and not allowing the blood to flow out of the upper left chamber of the heart. The blood gets backed up and leaks into the left lung causing it to be inflamed. I believe that what he was describing is mitral valve stenosis, but I don't remember him actually using that phrase. I have a hard time really concentrating on what the doctor's saying though, so he may have. I did go out and buy a couple of planners this afternoon, so I can record instructions for both of the babies. Believe it or not, this all makes a lot of sense to me (assuming that I interpreted things correctly). Doctor's always think that Miles has pneumonia because his left lungs rattles constantly. When he is given x-rays, his left lung always shows slightly cloudy but doesn't really show pneumonia. To date, the thought was that an underdeveloped swallow reflex was allowing liquid into his lungs, and that would inflame them. I think that this scenario makes much more sense. I've always felt like his breathing problems were related to his heart problems, and it's kind of nice to have that validated.......even though it pretty much sucks at the same time.
What Dr. Puchalski was describing wouldn't really be able to be heard through a stethoscope, so, as before mentioned, he ordered an echocardiogram, so he could actually look at his mitral valve. He said that he may even go as far as to order a cardiac catheter. I interpret that to mean, "if I cannot see what I assume is causing the problem with the echo, we'll do a cath to really make sure it's not happening". He sounds pretty serious about this all.
Dr. Puchalski did not give any idea of possible treatment. I think that that was probably intentional since we don't know if this is even a problem yet. Why worry about something prematurely. I would assume that if this is the problem, depending upon the severity, another heart surgery would be in order. I think in mild cases, this is treated with medication, but from what I've read, that's typically in adults. I don't know about small children. I think it would be more likely, that they would try to do a valve repair or replacement. Again, I have absolutely no idea. This is all just speculation.
Of course I always have concern for my baby, but right now, I feel pretty positive about everything. I do not doubt that this may be partially to blame for Miles' respiratory problems, but in a way, I think that that's a good thing. We've expected, from the beginning, that Miles' heart problems would worsen, requiring more surgeries. It's hard playing the waiting game. I would rather something be found now, at a regular cardiology visit, than have something terrible and unexpected happen in the future because I didn't realize that things were getting worse. So, I look at it this way: either Miles is suffering from mitral valve stenosis, we'll do what we can to correct it and his breathing improves-- or his mitral valve is fine, and we won't have to have surgery right away. Win. Win.
We'll know more on Thursday. We're taking Miles in for a sedated echo (echocardiogram with full sedation is pretty typical for little guys that can't hold still) at 2:30. I was instructed to make sure that Dr. Puchalski was there, so he could review the results and talk to us about further testing or treatment or whatever. I will try to get some blogging in that night, but I'm not promising anything. That's a pretty late appointment, and those things are so stinking long and tiring. I may just not feel like doing it. I'll get it in there sometime though, so stay tuned......
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