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)
Monday, February 8, 2010
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.
Thursday, January 28, 2010
Such a Big Boy
My baby is so big! As so many of you know, my 18 month old son does not love to wear a diaper. A little while back, I figured that since he was so good at removing his diaper himself, I might as well get a little potty and see what happened. I just grabbed the basic plastic potty chair from Babies R Us. He could sit in the chair, or we could remove the seat and attach it to the big toilet. Although I bought it shortly before Christmas, it sat in my trunk until early this week. We tried it out, and Miles was terrified. I really thought that he would love it. He has a couple of little chairs, and he loves sitting in them. Apparently, the hole in the middle of the seat of this one made a big difference. Ben can attest to our child's pure terror. We tried both the chair and the toilet seat, but neither seemed to agree with little Miles. Well, it was a nice attempt.
While at the bank on yesterday, I decided to swing by the baby aisle (our Chase is inside of Walmart--really most of Tooele is inside of Walmart--very unfortunate) and see if I could come up with any brilliant ideas. I thought that maybe pull-ups would help for a while. Miles is used to undoing the tabs on his diaper, and since these don't have tabs, maybe it would fool him...for a little while anyway. So, I grabbed a package. Coincidentally, not all brands of toddler pants are tabless, including the ones I got. Unfortunately, they were the only brand that went as low as a size 2T. Also, pull-ups are not a good replacement for diapers. If your child pees in a pull-up, you better change it immediately or you will be cleaning up much more than your baby's bottom. Back to the point though. In the aisle, I noticed the cutest little toilet seat attachment that was a football. It was super cushy, and it occurred to me that maybe the other seat was just really uncomfortable since it had no cushion. Why not? It was only $15. It couldn't hurt anything.
We got home and tried it out. Low and behold, Miles thought it was the coolest thing ever. His favorite part were the little handles on either side. He was so proud balancing himself, holding onto the handles, sitting on the big boy potty. He loved it, but no real results. The problem is that my child is only a year and a half and either doesn't recognize when he needs to go to the bathroom, doesn't know how to communicate when he needs to go, or (most likely) doesn't care to communicate when he needs to go. So, we just keep trying. After he woke up from his much appreciated nap, I decided to put him back on the potty. Sure enough, as soon as he got situated, he started to pee. Good, good boy! I was such a proud mommy. He was so cute and smart too. As soon as he finished, he grabbed a little piece (little because I stopped him) of toilet paper and wiped his little pee pee. Unfortunately, he continued to also try to wipe his arm and face with the same piece of tissue. We'll work on that one. I was about to get him down, when he started grunting a little, so I thought I'd better leave him. After a second, he did a little toot, then happily said, "all done".
I was so pleased that I took my big boy to get a big boy Happy Meal (a big boy Happy Meal includes a messy cheeseburger as opposed to a baby Happy Meal that has clean chicken nuggets) and run some errands. After eating his entire (minus one apple wedge (plus the caramel sauce that I conveniently never showed him) and two bites of cheeseburger) Happy Meal, I decided to try again before I put him to bed. So, back on the potty he went. He knows what he's supposed to do. He pushed out a little more potty......and another toot. I can't believe that my baby used the big boy twice in one day! I couldn't be happier.
Obviously, this doesn't mean too much since he's still too young to really express his bathroom needs. Hopefully, that comes with not too much time. I mean, how awesome would it be if I did not have to worry about (or pay for) his diapers when number two (no pun intended) gets here this summer. Now I suppose I have to start working on weaning him off of the 3 or 4 bottles he goes through during the middle of the night. We're going to have a hard time getting rid of diapers if we don't first get rid of all the bedtime drinking.
While at the bank on yesterday, I decided to swing by the baby aisle (our Chase is inside of Walmart--really most of Tooele is inside of Walmart--very unfortunate) and see if I could come up with any brilliant ideas. I thought that maybe pull-ups would help for a while. Miles is used to undoing the tabs on his diaper, and since these don't have tabs, maybe it would fool him...for a little while anyway. So, I grabbed a package. Coincidentally, not all brands of toddler pants are tabless, including the ones I got. Unfortunately, they were the only brand that went as low as a size 2T. Also, pull-ups are not a good replacement for diapers. If your child pees in a pull-up, you better change it immediately or you will be cleaning up much more than your baby's bottom. Back to the point though. In the aisle, I noticed the cutest little toilet seat attachment that was a football. It was super cushy, and it occurred to me that maybe the other seat was just really uncomfortable since it had no cushion. Why not? It was only $15. It couldn't hurt anything.
We got home and tried it out. Low and behold, Miles thought it was the coolest thing ever. His favorite part were the little handles on either side. He was so proud balancing himself, holding onto the handles, sitting on the big boy potty. He loved it, but no real results. The problem is that my child is only a year and a half and either doesn't recognize when he needs to go to the bathroom, doesn't know how to communicate when he needs to go, or (most likely) doesn't care to communicate when he needs to go. So, we just keep trying. After he woke up from his much appreciated nap, I decided to put him back on the potty. Sure enough, as soon as he got situated, he started to pee. Good, good boy! I was such a proud mommy. He was so cute and smart too. As soon as he finished, he grabbed a little piece (little because I stopped him) of toilet paper and wiped his little pee pee. Unfortunately, he continued to also try to wipe his arm and face with the same piece of tissue. We'll work on that one. I was about to get him down, when he started grunting a little, so I thought I'd better leave him. After a second, he did a little toot, then happily said, "all done".
I was so pleased that I took my big boy to get a big boy Happy Meal (a big boy Happy Meal includes a messy cheeseburger as opposed to a baby Happy Meal that has clean chicken nuggets) and run some errands. After eating his entire (minus one apple wedge (plus the caramel sauce that I conveniently never showed him) and two bites of cheeseburger) Happy Meal, I decided to try again before I put him to bed. So, back on the potty he went. He knows what he's supposed to do. He pushed out a little more potty......and another toot. I can't believe that my baby used the big boy twice in one day! I couldn't be happier.
Obviously, this doesn't mean too much since he's still too young to really express his bathroom needs. Hopefully, that comes with not too much time. I mean, how awesome would it be if I did not have to worry about (or pay for) his diapers when number two (no pun intended) gets here this summer. Now I suppose I have to start working on weaning him off of the 3 or 4 bottles he goes through during the middle of the night. We're going to have a hard time getting rid of diapers if we don't first get rid of all the bedtime drinking.
Wednesday, January 6, 2010
Just a Quick Update
Well, there isn't much to update, but I just wanted to let everyone know that we're not in the hospital or anything. Miles just woke up from his second nap of the day. The first one was probably an hour and a half or two hours. This last one kicked that one's butt though, four and a half hours. Right now, his spirits seem to be up. He's sitting in bed playing with his laptop and daddy's headphones (don't tell). He's eaten a couple of chips and part of my toast, and he's drinking a bottle of milk now. So far, we haven't had to clean up anymore vomit. The milk does make me a little nervous though. I haven't let him have any since yesterday evening. We'll also have to see how his antibiotics go tonight. It doesn't seem to agree with his little tummy very well.
The day has been kind of up and down. Miles didn't have a very good night last night (which I'm sure accounts for the massive amount of sleeping today). He woke up really happy wanting to play, but that only lasted for about a half hour before he started whimpering and wanting to cuddle. He'll get really hot, then cool back down. Pretty typical of pneumonia, I think. Luckily, his breathing sounds pretty good, he's eating a little, and he just overall doesn't seem as bad as last night.
Nothing has happened to follow up my little issue. Hopefully, it was just a one time fluke. I'll let you all know if anything different happens. For now, I have to give my finger back to Miles for his creepy stroking.
The day has been kind of up and down. Miles didn't have a very good night last night (which I'm sure accounts for the massive amount of sleeping today). He woke up really happy wanting to play, but that only lasted for about a half hour before he started whimpering and wanting to cuddle. He'll get really hot, then cool back down. Pretty typical of pneumonia, I think. Luckily, his breathing sounds pretty good, he's eating a little, and he just overall doesn't seem as bad as last night.
Nothing has happened to follow up my little issue. Hopefully, it was just a one time fluke. I'll let you all know if anything different happens. For now, I have to give my finger back to Miles for his creepy stroking.
Tuesday, January 5, 2010
More? Really?
It's been a very interesting and eventful past 24. It all started last night around 8:30ish. Miles was laying on the bed having a bottle and coughing as usual. Then the puking started. Nothing terribly new, but this time it was particularly nasty. Maybe it was because I'm pregnant, or perhaps it was because I had just eaten an entire mixing bowl of salad (something that anyone who knew me during my first pregnancy knows that I really shouldn't have done), but at first sight (and smell), I had to run to the bathroom myself. After losing the entire mixing bowl, I thought I was good, but I had barely lifted my head when it had to go back down. Only this time, no salad. Blood. Yikes! That's not normal. At first I thought it must be something else, but I was kind of messy, and it got all over my arm. It was blood. Weird though because I never felt sick. I went back to clean up my pukey child, and at first wipe, there it went again. Right on the bed, more blood. Now this wasn't like gallons or anything, but it also wasn't like a little stream from a raw throat. Still, I felt completely fine, just a little concerned. After talking to my sister and a maternity nurse at the local hospital, I decided to just watch it through the night. In the morning, I called my OBGYN (because my real concern was with the pregnancy since, let's be honest, I really don't know that much about it), and I was instructed to go the ER and get checked out. Honestly, I was hoping that they would want me to go into their offices because I just don't love the hospital out here (or much else). I did as I was told though. Ben was off to work, so Miles and I got to sit in the ER for about 3 1/2 hours by ourselves. Poor Miles. He tried so hard to be good. Anyhow, I had a checkup, including all sorts of blood tests and a sonogram to make sure that baby is okay. Everything looked good. For now, I'm back to watching it until my next appointment with my OBGYN in a week or so. If it happens again, I'm supposed to go back to have a surgeon do some sort of scope. In the meantime, I'm supposed to take Prevacid to help with any reflux or potential ulcers.
This is ironic, Prevacid, I mean. Here's why. I was woken up this morning at about 8:00 by a phone call. It was Miles' pulmonologist. A little early, but I certainly appreciated the call, especially since he personally took the time to make it. He was following up on the study (that seemed kind of pointless) that we had last week. He kind of seemed to think that this particular study just wasn't very successful, but he still believes that the problem is a nicked or paralyzed vocal chord. He also said that the study did show some pooling (I don't know what that means). He told me that he was placing the order with Primary's ENT to have more testing done. Miles gets to have a camera shoved down his nose. Good times! But I digress, the irony. Another purpose of the call was to tell me that he was sending in a prescription of Prevacid to help with the reflux while we're trying to get this whole thing figured out. Thank Heaven because I have had to do 3 laundry loads of sheets in the past day (I'll explain why in the next paragraph). Odd, isn't it? Neither of us have ever taken this before, and we both get instructed to take it in the same day. Oooooohhhhh.....
After a long boring stint at the ER, Miles was ready for a nap. We came home, and he slept for about an hour, hour and half, not nearly as long as I had expected or hoped. When he woke up, he was really whimpery and irritable. All he wanted to do was lay on my lap and stroke my finger (something he does to soothe himself...a little creepy). Around 6 or 6:30, up came the bottle again. Luckily, I was able to maintain my composure this time. Another load. After a bath and fresh sheets, I tried giving him some medicine. Then up it came. Perfect, right after changing the sheets again (now I've got a towel under him). I took his temperature and was surprise when the thermometer still hadn't beeped at 103.8. I tried again on him to make sure the reading was the same then tried on myself to make sure the thermometer wasn't broken. Nope. I was only 98. We went to PM Pediatrics since they were still open in hopes that his regular doctor would be there. Luckily, he was. After a short listen, he said, "I could send you over to radiology for an x-ray if you'd like, but Miles has pneumonia". Super. Now if it were the ER telling me this, I probably wouldn't believe it because they've told me that twice before and been wrong. However, this is Miles' doctor that sees him almost weekly and has never accused him as having pneumonia before, so I believe him. He gave him a breathing treatment while we were there because he really thought that he needed it, and I left the nebulizer in Ben's car. Oops! We get to continue that every 6 hours for......I don't know.....forever probably. Miles also has to take a few antibiotics and some more steroids, and we have to go back to be checked up. Dr. Ditty told me that he was going to send us home because in his words, "You're an expert". I can do everything at home that they would do there, and Miles will be a lot more comfortable here. Of course, if anything gets worse, we'll go back. Dr. Ditty told me that he'd be there the entire day tomorrow, and he'd have his pager if anything happened while he wasn't there. It's kind of nice having the only really seriously ill child at a practice. We get so much special attention, everyone knows us, and we always have priority when we walk in the office, regardless of if we have an appointment or not. I guess if we have to deal with all the crap, we kind of deserve it. Aren't I entitled?!
This is ironic, Prevacid, I mean. Here's why. I was woken up this morning at about 8:00 by a phone call. It was Miles' pulmonologist. A little early, but I certainly appreciated the call, especially since he personally took the time to make it. He was following up on the study (that seemed kind of pointless) that we had last week. He kind of seemed to think that this particular study just wasn't very successful, but he still believes that the problem is a nicked or paralyzed vocal chord. He also said that the study did show some pooling (I don't know what that means). He told me that he was placing the order with Primary's ENT to have more testing done. Miles gets to have a camera shoved down his nose. Good times! But I digress, the irony. Another purpose of the call was to tell me that he was sending in a prescription of Prevacid to help with the reflux while we're trying to get this whole thing figured out. Thank Heaven because I have had to do 3 laundry loads of sheets in the past day (I'll explain why in the next paragraph). Odd, isn't it? Neither of us have ever taken this before, and we both get instructed to take it in the same day. Oooooohhhhh.....
After a long boring stint at the ER, Miles was ready for a nap. We came home, and he slept for about an hour, hour and half, not nearly as long as I had expected or hoped. When he woke up, he was really whimpery and irritable. All he wanted to do was lay on my lap and stroke my finger (something he does to soothe himself...a little creepy). Around 6 or 6:30, up came the bottle again. Luckily, I was able to maintain my composure this time. Another load. After a bath and fresh sheets, I tried giving him some medicine. Then up it came. Perfect, right after changing the sheets again (now I've got a towel under him). I took his temperature and was surprise when the thermometer still hadn't beeped at 103.8. I tried again on him to make sure the reading was the same then tried on myself to make sure the thermometer wasn't broken. Nope. I was only 98. We went to PM Pediatrics since they were still open in hopes that his regular doctor would be there. Luckily, he was. After a short listen, he said, "I could send you over to radiology for an x-ray if you'd like, but Miles has pneumonia". Super. Now if it were the ER telling me this, I probably wouldn't believe it because they've told me that twice before and been wrong. However, this is Miles' doctor that sees him almost weekly and has never accused him as having pneumonia before, so I believe him. He gave him a breathing treatment while we were there because he really thought that he needed it, and I left the nebulizer in Ben's car. Oops! We get to continue that every 6 hours for......I don't know.....forever probably. Miles also has to take a few antibiotics and some more steroids, and we have to go back to be checked up. Dr. Ditty told me that he was going to send us home because in his words, "You're an expert". I can do everything at home that they would do there, and Miles will be a lot more comfortable here. Of course, if anything gets worse, we'll go back. Dr. Ditty told me that he'd be there the entire day tomorrow, and he'd have his pager if anything happened while he wasn't there. It's kind of nice having the only really seriously ill child at a practice. We get so much special attention, everyone knows us, and we always have priority when we walk in the office, regardless of if we have an appointment or not. I guess if we have to deal with all the crap, we kind of deserve it. Aren't I entitled?!
Sunday, January 3, 2010
Swallow Study and More
On the 28th, we took Miles in for the much awaited swallow study at PCMC. This was done with the expectation of discovering why he has been having trouble drinking without coughing constantly and hopefully give some insight into his breathing issues. In a nutshell, the pulmonologist suspected that it was due in part to a nicked vocal chord. For more info, read the previous post. For the study, Miles was basically strapped into a car seat looking device. He was fed three different substances (something like pudding, juice, and something milky) mixed with something that shows nicely under radiation. Then they x-rayed his upper body while eating. I was surprised that he didn't put up too much of a fight while being fed. Usually, he'll only eat if it's off of my plate. Because I'm pregnant, I couldn't be in the room, so I stood behind the lead wall where the screens were. It was really interesting to watch.
However, it was pretty discouraging when I kept hearing the techs and doctors whisper to each other, "I don't see anything." "It looks normal." I was told that everything seemed fine, which to most people might seem like a good thing. Unfortunately, I, along with my family and Miles and his doctors all know that there is something wrong. It would be nice to at least know what it is. Anyhow, the doctor said that it is still a possibility that the vocal chord could be the problem. The study isn't always reliable. Miles could have just been lucky eating that time. That said, she also said that they "provoked" him quite a bit during the study in hopes of seeing the difficulty.
I'm not completely positive what the plan is from here. The pulmonologist said that really regardless of the outcome of this test, the next step would be going to an ENT. From there, I think it's back to the pulmonologist. I don't know what kind of timeline we're looking at. I called and left a message with the pulmonology clinic after the appointment. Of course, I haven't heard back. I'll try again tomorrow. Hopefully, we get some things figured out soon because the problems do seem to be getting more regular. It's already just about time for a refill on the neb vials, and we started out with 30 last month.
I was a little surprised (pleasantly) when I only had to give him one treatment while we were at the cabin this week. I had to take my inhaler about ten thousand times. I usually have a hard time with really cold air. Doesn't seem to bother Miles though. He really liked riding on the snowmobiles and sledding down the driveway. He looked so cute in his new snow clothes! I really wish that we had taken pictures. He looked just like the little brother on "A Christmas Story". He had a really hard time walking and would frequently fall over onto his back and squirm like an upside down turtle. We couldn't spend too much time in the snow though because his boots kept falling off. I'll have to find some others. What I bought was a really stupid design for a toddler's boots. Anyway, I'm really glad to see that he enjoys the cabin in the winter. He also had a lot of fun playing with his cousins and pushing all the buttons he could find in the cabin (I'll have to figure some way out to better Miles-proof the cabin).....I hope that everything is still working with Kevin's WII.
However, it was pretty discouraging when I kept hearing the techs and doctors whisper to each other, "I don't see anything." "It looks normal." I was told that everything seemed fine, which to most people might seem like a good thing. Unfortunately, I, along with my family and Miles and his doctors all know that there is something wrong. It would be nice to at least know what it is. Anyhow, the doctor said that it is still a possibility that the vocal chord could be the problem. The study isn't always reliable. Miles could have just been lucky eating that time. That said, she also said that they "provoked" him quite a bit during the study in hopes of seeing the difficulty.
I'm not completely positive what the plan is from here. The pulmonologist said that really regardless of the outcome of this test, the next step would be going to an ENT. From there, I think it's back to the pulmonologist. I don't know what kind of timeline we're looking at. I called and left a message with the pulmonology clinic after the appointment. Of course, I haven't heard back. I'll try again tomorrow. Hopefully, we get some things figured out soon because the problems do seem to be getting more regular. It's already just about time for a refill on the neb vials, and we started out with 30 last month.
I was a little surprised (pleasantly) when I only had to give him one treatment while we were at the cabin this week. I had to take my inhaler about ten thousand times. I usually have a hard time with really cold air. Doesn't seem to bother Miles though. He really liked riding on the snowmobiles and sledding down the driveway. He looked so cute in his new snow clothes! I really wish that we had taken pictures. He looked just like the little brother on "A Christmas Story". He had a really hard time walking and would frequently fall over onto his back and squirm like an upside down turtle. We couldn't spend too much time in the snow though because his boots kept falling off. I'll have to find some others. What I bought was a really stupid design for a toddler's boots. Anyway, I'm really glad to see that he enjoys the cabin in the winter. He also had a lot of fun playing with his cousins and pushing all the buttons he could find in the cabin (I'll have to figure some way out to better Miles-proof the cabin).....I hope that everything is still working with Kevin's WII.
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