Saturday, February 20, 2010
Monday, February 8, 2010
Never Ending Appointments
Despite what we were told Friday afternoon, we actually ended up being able to go home that night. Thank Heaven! I had so much to do. A couple of unexpected days away from home can really throw you off, especially when you do a little work from home. Anyhow, we were sent home with a long list of instructions. Flovent twice a day, zopanex every six hours, and prelone twice a day, with motrin as needed. In addition, we needed to follow up with the pediatrician, cardiologist, and ENT. Plus, I had to schedule my own fetal echo. That was an instruction from Miles' cardiologist. He wants Primary technicians to do some special ultrasounds to make sure that everything is normal with little Henry's heart. There's not any indication of problems currently, but there likelihood of a second child being born with congenital heart disease is increased about 10% when another child has it, so we're being safe.
Miles was very happy to be able to come home and especially happy that he was no longer tethered to a bunch of machines. He was also excited to get home to his big boy potty. That's definitely still a work in progress though. More of a novelty to him than a rule. He loves that he's able to move around the house, and he's so happy to be back to his "Bird" (Follow that Bird is his new favorite movie).
Things have been relatively relaxed for Miles since we got home, but sadly, I cannot say the same for Ben and I. We're both kind of running on empty right now. It seems like we've been inundated with never ending appointments and commitments and unfortunately the ones that we've had to keep haven't always been the ones that we've wanted to keep (we are so sorry Brooklyn and so proud of your decision to get baptized). Saturday was spent running to different pharmacies, giving treatments, and trying to catch up on a little bit of work, homework, and sleep in between. The plan was to get Miles in to his pediatrician that evening, but I revert back to my previous complaint about our small practice.
Sunday we met with the bishop to discuss our situation and to try to come up with a viable solution to our church-going dilemma. As it is currently, Ben has to be at the 2nd and 3rd hours to teach primary. That gives me the sacrament hour, but Ben needs to be able to do that too, and I would like to be able to go to R.S. and or Sunday School at least sometimes, but for the time being anyway, Miles just can't go to church......not our germy ward anyway. No offense guys. The bishop agreed that something needed to happen so that we at least both had the opportunity to go to sacrament meeting. The solution that he came up with certainly isn't perfect, and I must admit that I kind of have my doubts that it will really be any different than bringing Miles to our ward, but I'm absolutely willing to give it a try. He thought that, assuming that schedules didn't conflict, maybe it would work for all three of us to try attending the singles ward sacrament meeting. Yes, Miles would still be there, but his thought was that there wouldn't be any bugary little kids to infect him, so it might be a little better. Ben would then be able to keep his primary calling. Although, I would still be left without the last two hours. The solution to that would be Ben coming home and giving us his lesson. I actually kind of look forward to that. I was also thinking that maybe prior to his lessons, I would prepare the little extra project (he teaches 4 year olds, so there are a lot of games and art projects) and maybe laminate it to give Miles something physical to play with. Plus, Ben could always use it as the example in his lesson. I guess in order for that to work, this years Primary Partners needs to not be out of stock everywhere. Luckily, the 4 year old lessons are pretty general, so we've been using an old one and adapting where needed.
This morning, I talked to all of the doctor's offices. We're keeping our appointment with the ENT on the 18th. When I called to make the cardiologist appointment, even with the orders from Primary, the soonest they could get us in was March 15th. Ridiculous!! They were the ones that requested we see him within two weeks. Luckily, I already had an appointment scheduled for the 1st. It's definitely not within 2 weeks of discharge, but at least it's not the 15th. I have my fetal echo scheduled the next day, so we're going to be pretty busy up at Primary this coming month. Ben and I also feel pretty strongly that another surgery is coming, so we're gearing up for that too. Kind of sucks that as soon as we get some money saved up for new carpet we have some disaster. I really want my carpet! I guess we'll just see what happens after taxes. Maybe we'll still be able to do it.
This afternoon, we finally got in to his pediatrician. Things are looking pretty good. His oxygen levels were right around 93%, not perfect, but nothing requiring extra. He's gained a little weight, I'm sure because he's eating and drinking much better and not throwing up. He's not dehydrated, and most importantly, he's happy and active. Dr. Ditty told me that he didn't want to get me too scared on Wednesday, but he was very worried about Miles when we took him in. He said that sometimes after working so hard to breath, he's seen kids just give up, and that's what Miles looked like. Like he was too tired to try anymore. Terrifying. It's difficult as a parent of a baby to know when it's time to seek outside help. He was still breathing okay and had no fever, but Miles is really the one that decides when he's done, and unfortunately, he can't verbally communicate that, so we just have to be very aware of his actions.
I think that for now we're doing pretty well. I do wish that we could get some things figured out sooner that I have them scheduled, but I guess that's life. Now it's time to get back on track. I have a very messy house that isn't cleaning itself, and I think we're just about out of clean underwear, so I better get on that too.
Until next time, everyone have a happy Valentine's Day! I'm sure you'll all be thinking of poor bored little us while you're all in Mexico or Las Vegas or wherever you may be celebrating. Jk. (I could use some suggestions for something creative and fun that I could do for Ben--and I think it probably needs to include Miles too)
Miles was very happy to be able to come home and especially happy that he was no longer tethered to a bunch of machines. He was also excited to get home to his big boy potty. That's definitely still a work in progress though. More of a novelty to him than a rule. He loves that he's able to move around the house, and he's so happy to be back to his "Bird" (Follow that Bird is his new favorite movie).
Things have been relatively relaxed for Miles since we got home, but sadly, I cannot say the same for Ben and I. We're both kind of running on empty right now. It seems like we've been inundated with never ending appointments and commitments and unfortunately the ones that we've had to keep haven't always been the ones that we've wanted to keep (we are so sorry Brooklyn and so proud of your decision to get baptized). Saturday was spent running to different pharmacies, giving treatments, and trying to catch up on a little bit of work, homework, and sleep in between. The plan was to get Miles in to his pediatrician that evening, but I revert back to my previous complaint about our small practice.
Sunday we met with the bishop to discuss our situation and to try to come up with a viable solution to our church-going dilemma. As it is currently, Ben has to be at the 2nd and 3rd hours to teach primary. That gives me the sacrament hour, but Ben needs to be able to do that too, and I would like to be able to go to R.S. and or Sunday School at least sometimes, but for the time being anyway, Miles just can't go to church......not our germy ward anyway. No offense guys. The bishop agreed that something needed to happen so that we at least both had the opportunity to go to sacrament meeting. The solution that he came up with certainly isn't perfect, and I must admit that I kind of have my doubts that it will really be any different than bringing Miles to our ward, but I'm absolutely willing to give it a try. He thought that, assuming that schedules didn't conflict, maybe it would work for all three of us to try attending the singles ward sacrament meeting. Yes, Miles would still be there, but his thought was that there wouldn't be any bugary little kids to infect him, so it might be a little better. Ben would then be able to keep his primary calling. Although, I would still be left without the last two hours. The solution to that would be Ben coming home and giving us his lesson. I actually kind of look forward to that. I was also thinking that maybe prior to his lessons, I would prepare the little extra project (he teaches 4 year olds, so there are a lot of games and art projects) and maybe laminate it to give Miles something physical to play with. Plus, Ben could always use it as the example in his lesson. I guess in order for that to work, this years Primary Partners needs to not be out of stock everywhere. Luckily, the 4 year old lessons are pretty general, so we've been using an old one and adapting where needed.
This morning, I talked to all of the doctor's offices. We're keeping our appointment with the ENT on the 18th. When I called to make the cardiologist appointment, even with the orders from Primary, the soonest they could get us in was March 15th. Ridiculous!! They were the ones that requested we see him within two weeks. Luckily, I already had an appointment scheduled for the 1st. It's definitely not within 2 weeks of discharge, but at least it's not the 15th. I have my fetal echo scheduled the next day, so we're going to be pretty busy up at Primary this coming month. Ben and I also feel pretty strongly that another surgery is coming, so we're gearing up for that too. Kind of sucks that as soon as we get some money saved up for new carpet we have some disaster. I really want my carpet! I guess we'll just see what happens after taxes. Maybe we'll still be able to do it.
This afternoon, we finally got in to his pediatrician. Things are looking pretty good. His oxygen levels were right around 93%, not perfect, but nothing requiring extra. He's gained a little weight, I'm sure because he's eating and drinking much better and not throwing up. He's not dehydrated, and most importantly, he's happy and active. Dr. Ditty told me that he didn't want to get me too scared on Wednesday, but he was very worried about Miles when we took him in. He said that sometimes after working so hard to breath, he's seen kids just give up, and that's what Miles looked like. Like he was too tired to try anymore. Terrifying. It's difficult as a parent of a baby to know when it's time to seek outside help. He was still breathing okay and had no fever, but Miles is really the one that decides when he's done, and unfortunately, he can't verbally communicate that, so we just have to be very aware of his actions.
I think that for now we're doing pretty well. I do wish that we could get some things figured out sooner that I have them scheduled, but I guess that's life. Now it's time to get back on track. I have a very messy house that isn't cleaning itself, and I think we're just about out of clean underwear, so I better get on that too.
Until next time, everyone have a happy Valentine's Day! I'm sure you'll all be thinking of poor bored little us while you're all in Mexico or Las Vegas or wherever you may be celebrating. Jk. (I could use some suggestions for something creative and fun that I could do for Ben--and I think it probably needs to include Miles too)
Thursday, February 4, 2010
No More Nursery
Well, here we are. Our second night at Primary. Sadly, things got quite a bit worse following that last post. We toughed it out until morning then squoze ourselves in to see Dr. Ditty. Although Miles' oxygen levels definitely weren't the worst he'd ever seen, Dr. Ditty was pretty discouraged. He said he didn't feel comfortable treating Miles because he thought that he needed constant one-on-one care this time. In his words, Miles looked like "he had just given up", and that really worried Dr. Ditty. And he did look that way. He was totally lethargic and had no reaction to anything. Dr. Ditty has seen Miles at his worst (speaking in terms of health), but he'd always maintained some activity and personality. Not this time. So, he sent us around the corner to the ER (his practice is attached to the hospital). Of course, the plan was to stabilize to an extent and cart (or ambulance) us off to Primary. And that's just what they did. That makes number three ride for me, much to Ben's disappointment since he still hasn't ridden in an ambulance. I assured him that this ride would have been disappointing though. No lights. No sirens. I don't think that we were even going any faster than traffic. I'm sure that that was because by the time we pulled out of the parking lot, Miles was very calm, sounding good, and fast asleep.
I always hate it when there's an emergency, but by the time you get to the hospital, everything is almost fine. I feel like I have to justify my being there to the doctors. "I promise. He sounded much worse an hour ago. When I gave him the treatments, they didn't seem to help...." Clearly they took us seriously because we're still here, and there seems to be no end in sight. Possibly tomorrow....although no one with any authority has given me cause to believe that. Anyway, here's the scoop. Those follow-up surveys must really work because the only complaint that I've ever had about Primary is that there never seemed to be any communication with the cardiologist when we'd been admitted despite how many requests I made. Well, this time, they took the communication with both the cardiologist and pulmonologist very seriously. The team that has been working with Miles has basically been taking their orders directly from Dr. Kang, the pulmonologist. He's extending all of his efforts to get Miles seen by the ENTs while we are still here. That would be great and impressive because when I made his appointment a month ago (and it's still two weeks away) I was told that they only do these particular test one day a week. They want to do a fees study (no idea what that is) and a throat scope. It would be so nice to get it all done here now.
Additionally, there have been a few little heart concerns since we've been here. I think that's probably why there hasn't really been talk of release yet. Yesterday, while we were being checked in, one of the residents brought up Miles' heart murmur. I guess it was pretty pronounced. This morning, the same resident checked him out, but just during the night, the murmur had gotten louder, and his blood pressure is a little high. This was confirmed by the head doctor (I can't remember what to call her). This could very possibly be caused by all the medication, but it could also be an indication that the coarc has returned or that one of the other problems had gotten worse. After talking to Dr. Puchalski, his cardiologist, they were directed to have an echo done. We tried that today, but they decided to do it without sedation. Unfortunately, that didn't work with my little pill. We're going to try again in the morning. We can't completely sedate since he's on oxygen and is being treated for some viruses, so they're going to try a local anesthetic. Hopefully, it works out. I would love to get it done while we're still here. Plus, poor little Miles has to fast for it, so it would suck if it were all for nothing.
I guess the moral of this whole adventure is that when a doctor suggests that you don't put your child in nursery for a while because of medical problems, you listen to him.
Since all of my posts seem to be pretty much downers, I will end on a good note. Amidst all of this chaos today, Ben and I snuck away for our ultrasound. It's a Henry! Yes. That will be his name. You can love it or hate it, but it's still going to be his name. Miles can't wait to have a little brother to beat up.....even though he may not realize it yet.
I always hate it when there's an emergency, but by the time you get to the hospital, everything is almost fine. I feel like I have to justify my being there to the doctors. "I promise. He sounded much worse an hour ago. When I gave him the treatments, they didn't seem to help...." Clearly they took us seriously because we're still here, and there seems to be no end in sight. Possibly tomorrow....although no one with any authority has given me cause to believe that. Anyway, here's the scoop. Those follow-up surveys must really work because the only complaint that I've ever had about Primary is that there never seemed to be any communication with the cardiologist when we'd been admitted despite how many requests I made. Well, this time, they took the communication with both the cardiologist and pulmonologist very seriously. The team that has been working with Miles has basically been taking their orders directly from Dr. Kang, the pulmonologist. He's extending all of his efforts to get Miles seen by the ENTs while we are still here. That would be great and impressive because when I made his appointment a month ago (and it's still two weeks away) I was told that they only do these particular test one day a week. They want to do a fees study (no idea what that is) and a throat scope. It would be so nice to get it all done here now.
Additionally, there have been a few little heart concerns since we've been here. I think that's probably why there hasn't really been talk of release yet. Yesterday, while we were being checked in, one of the residents brought up Miles' heart murmur. I guess it was pretty pronounced. This morning, the same resident checked him out, but just during the night, the murmur had gotten louder, and his blood pressure is a little high. This was confirmed by the head doctor (I can't remember what to call her). This could very possibly be caused by all the medication, but it could also be an indication that the coarc has returned or that one of the other problems had gotten worse. After talking to Dr. Puchalski, his cardiologist, they were directed to have an echo done. We tried that today, but they decided to do it without sedation. Unfortunately, that didn't work with my little pill. We're going to try again in the morning. We can't completely sedate since he's on oxygen and is being treated for some viruses, so they're going to try a local anesthetic. Hopefully, it works out. I would love to get it done while we're still here. Plus, poor little Miles has to fast for it, so it would suck if it were all for nothing.
I guess the moral of this whole adventure is that when a doctor suggests that you don't put your child in nursery for a while because of medical problems, you listen to him.
Since all of my posts seem to be pretty much downers, I will end on a good note. Amidst all of this chaos today, Ben and I snuck away for our ultrasound. It's a Henry! Yes. That will be his name. You can love it or hate it, but it's still going to be his name. Miles can't wait to have a little brother to beat up.....even though he may not realize it yet.
Tuesday, February 2, 2010
It Gets Pretty Frustrating
I really like Miles' pediatrician, his pa even more so. It's nice going to a relatively small practice with a child with so many curious problems. He becomes a bit of a celebrity. Everyone in the office knows us, and we definitely get preferential treatment. I'm sure that it wouldn't be like that at any big office in Salt Lake. That said, smallish practices have their disadvantages too.
I better start a little earlier than the doctor's visit, but I'll get back to it. Many of you have heard that Ben got a new calling in the ward, a Sunday calling. Finally, something that he can actually do. Ward missionary and employment specialist aren't very concussive with a 2:30 pm to 11:00 pm work schedule, especially when that work is an hour away when traffic is good. His calling is pretty hilarious though, not exactly something that "fits" him. He was called to teach the 4 year old primary class. As great as the calling is, it's a little tough for me because it makes it very difficult for me to be able to go to the 2nd or 3rd hour of church. Miles has a very consistent track record of getting sick every time we try to take him back to church, so after our last hospital stay, we were told that we'd better keep him away for a while. Until now, Ben and I had kind of been switching off schedules, but now he's required to always be there for the last two hours. Well, Sunday, I told Ben that I wanted to take Miles to sacrament meeting, so we could all go. Ben decided that he wanted to take it a step further and let Miles go to nursery. As nervous as I was, I knew that Miles would love going. He always likes being around other kids and doesn't get the opportunity very often. Long story short, he went, had a great time, but about half of the kids in his class ended up being sick, so now Miles is too. I guess nursery just isn't an option for us right now. I really wish that people would learn that going to church sick isn't being more diligent. It's putting everyone else in a bad position.
Miles had been pretty good until this evening. He'd had a runny nose and a little cough, nothing that would seem too concerning. Unfortunately, that's how it always starts. Knowing this, I tried to gear up. I called to get refills for his nebulizer, but apparently, I didn't have any, so the pharmacy had to contact the doctor, and they never got back to me. As the evening got later, Miles' breathing started getting bad. I gave him a couple of treatments, but they didn't seem to do too much. Back to my original thoughts about our doctor's office. Around 8:30 pm, I thought I'd better run to the doctor's before they closed (they take walk-ins from 5-9pm, very convenient). Here's my problem with a small practice. When I got there there was a note on the door that read, "due to provider illness, we will not be open today". Perfect.
I decided to take him to a new night time pediatrics office that was only a couple of blocks away. I really thought I should get him somewhere before it got too bad, and I was also almost out of nebulizer treatments, so I was kind of hoping for some samples too. It's hard for me to take Miles somewhere where they aren't aware of his history. It gets pretty frustrating hearing over and over again that "he sounds fine; probably just a virus" when I know from great experience where this leads. Yes. He may not sound that bad right now. That's why I'm here. Because I don't want to end up at Primary again. I so often feel like doctor's aren't listening to anything I say, whether it be concerning Miles, or myself, or Ben. I feel like they've made their decisions in the first 30 seconds in the office. Finally, I just kind of told the doctor what I needed. Just give me some Zopanex samples and a prescription for Prelone. So, that's exactly what I got. Hopefully, it gets us through this episode.
I better start a little earlier than the doctor's visit, but I'll get back to it. Many of you have heard that Ben got a new calling in the ward, a Sunday calling. Finally, something that he can actually do. Ward missionary and employment specialist aren't very concussive with a 2:30 pm to 11:00 pm work schedule, especially when that work is an hour away when traffic is good. His calling is pretty hilarious though, not exactly something that "fits" him. He was called to teach the 4 year old primary class. As great as the calling is, it's a little tough for me because it makes it very difficult for me to be able to go to the 2nd or 3rd hour of church. Miles has a very consistent track record of getting sick every time we try to take him back to church, so after our last hospital stay, we were told that we'd better keep him away for a while. Until now, Ben and I had kind of been switching off schedules, but now he's required to always be there for the last two hours. Well, Sunday, I told Ben that I wanted to take Miles to sacrament meeting, so we could all go. Ben decided that he wanted to take it a step further and let Miles go to nursery. As nervous as I was, I knew that Miles would love going. He always likes being around other kids and doesn't get the opportunity very often. Long story short, he went, had a great time, but about half of the kids in his class ended up being sick, so now Miles is too. I guess nursery just isn't an option for us right now. I really wish that people would learn that going to church sick isn't being more diligent. It's putting everyone else in a bad position.
Miles had been pretty good until this evening. He'd had a runny nose and a little cough, nothing that would seem too concerning. Unfortunately, that's how it always starts. Knowing this, I tried to gear up. I called to get refills for his nebulizer, but apparently, I didn't have any, so the pharmacy had to contact the doctor, and they never got back to me. As the evening got later, Miles' breathing started getting bad. I gave him a couple of treatments, but they didn't seem to do too much. Back to my original thoughts about our doctor's office. Around 8:30 pm, I thought I'd better run to the doctor's before they closed (they take walk-ins from 5-9pm, very convenient). Here's my problem with a small practice. When I got there there was a note on the door that read, "due to provider illness, we will not be open today". Perfect.
I decided to take him to a new night time pediatrics office that was only a couple of blocks away. I really thought I should get him somewhere before it got too bad, and I was also almost out of nebulizer treatments, so I was kind of hoping for some samples too. It's hard for me to take Miles somewhere where they aren't aware of his history. It gets pretty frustrating hearing over and over again that "he sounds fine; probably just a virus" when I know from great experience where this leads. Yes. He may not sound that bad right now. That's why I'm here. Because I don't want to end up at Primary again. I so often feel like doctor's aren't listening to anything I say, whether it be concerning Miles, or myself, or Ben. I feel like they've made their decisions in the first 30 seconds in the office. Finally, I just kind of told the doctor what I needed. Just give me some Zopanex samples and a prescription for Prelone. So, that's exactly what I got. Hopefully, it gets us through this episode.
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