Update

We finally had our appointment with the pulmonologist yesterday. I think we might be on track to getting some answers....maybe. We met with Dr. Kang, and it was actually a very pleasant appointment. Primary Children's has a new outpatient extension in South Jordan. It's really nice with a lot of fun toys and activity centers. While talking to the doctor, we had our own little child specialist playing with Miles and keeping him occupied. It made it so much easier without having to wrangle our little monster.

The appointment was pretty basic. Dr. Kang did a physical, but the majority of the appointment was spent discussing Miles' history. I really appreciated this because I've kind of felt that Miles has gotten a lot of diagnosis without really taking all history into consideration. He also pulled up past x-rays and reviewed them with us. He asked a lot of questions, and we did our best to answer.

So, what is his thought? Well, yes, Miles does have asthma. He does not think that he has malacia. He said that while he appreciated the recognizing of a problem in addition to asthma that it would be terribly unlikely that Miles would just now have this problem. He said that typically that is found in very young babies, and is typically gone by 8 months. Where there were no problems with this prior to a year, it doesn't really make sense. What he thinks that happened is that his vocal chord was nicked during surgery (which is very common), but it hasn't healed. What has happened as a result is that when he drinks, because of the injured vocal chord, there remains a slight opening allowing fluid into his lungs. Then his lungs become inflamed. He said that this could be why some medication can seem to be working and some not. Obviously, when the problem is asthma, asthma medication works, but when this is added, not everything does. He said that when steroids are administered they will seem to help because they will also lessen the inflammation.

So, what now? At this point, everything is still speculation, so we've got a lot of testing ahead of us. On the 28th, we will have a swallow study done at Primary. Hopefully, it will be helpful, but it's totally hit and miss depending upon if Miles will eat and how he does if he does. After the swallow study, the results will be sent to a pediatric ENT, and we'll have an appointment. From there, we'll go back to the pulmonologist with the ENT results, and we'll make a game plan. Still pretty up in the air, but at least it's something to start with, and at least something is being done to try to figure this mess out.

Finally Some Answers....Kind Of..

Well, I'm writing, so that must mean Miles is sick again. Unfortunately, that is exactly what it means. Someday, maybe I'll find something happily interesting in our lives to blog about. Late Wednesday night Miles started breathing heavily. It was a little different than our previous attacks because it didn't start with a cold or virus (nothing apparent anyway). We stayed up with him most of the night, giving him his inhaler and keeping him upright, so it was easier to breath. We were determined on staying out of the hospital this time. Sadly, by morning that was looking more and more unlikely.



We took him to his pediatrician's office first thing Thursday morning in hopes that some breathing treatments might get things under control. It ended up actually having positive results....kind of. Typically, when we take Miles to the doctor's office, he sees the PA, Dr. Ditty. We really like him. He's actually the one who first told us about Miles' heart murmur. He took it seriously enough to send us to a cardiologist, and we are certainly grateful for that. This time we saw Dr. Harroutunian (or something like that). He's the Chief of Medicine at the hospital out here (although I don't know that that is saying much). He wasn't really familiar with Miles' history, which would normally be really annoying, but this was kind of nice because it was like a fresh set of eyes....and ears. Despite some of the doctors opinion at Primary, Dr. H. said that there was absolutely no mistaking Miles' asthma. He told us that different breathing problems have very different, very unique breathing sounds. He said that Miles' asthma wheeze was unmistakable. However, different triggers may react differently to different treatments. After 4 typical neb treatments (I think it's called Zopanex), he wasn't really improving. That's the problem that we ran into at Primary, leading some doctors to think that it was something other than asthma. Then Dr. H. tried a different drug, Imotrex(?). After the first treatment, there was a signifigant improvement.

Despite his improved breathing, he certainly wasn't anywhere near 100%. After another treatment and some more careful listening, Dr. H. discovered another reason that the asthma may have been dismissed. He had me listen to Miles with the stethescope. His long wheezy exhalation was much better, but there was still a short whistle with each breath. The doctor explained that this sound was not a result of asthma. It was something else. At the beginning of the visit, he seemed to think that our visit with the pulmonologist next week was unnecessary, but after reviewing his other health problems and listening to him several times, through several treatments, over the course of several hours, he told us that he thought it was a good thing that we were going, and he wanted us to make sure that all of the results of his visit be sent to him. Anyhow, the whistling, he suspects is what is called trachealaryngomalacea. Basically, this is when the muscle in the trachea and or larynx is loose and can get inflamed and flap with breathing. It doesn't sound like it's a very serious problem, but I'm sure we'll know more after our pulmonology appointment on Monday.

For now, luckily, we got sent home with our own nebulizer this time. We're giving Miles a treatment every six hours and will continue that through the weekend. We'll see what the doctor thinks at that point. He's also back on Prednisone, which is always a concern for me, but it is a miracle drug. And he continues his maintainance inhaler, Flovent. He seems to be improving every day, but still isn't great. We're just super happy that we can do something from home rather than living at the hospital. Hopefully, Monday brings even more answers. I am so glad that our appointment is finally here, and I suppose that if Miles had to get sick, this was the time to do it. I'm sure that it will be easier for the Pulmonologist to decifer things when Miles is actually having problems.

Other than Miles, things are pretty okay, very busy. It's been tough getting things done because I have been super sick. For anyone who doesn't already know, Miles is going to be a big brother right around his second birthday. Pregnancy is not treating me kindly. As a result, my house is a mess, and we don't even have a Christmas tree up yet. Things are getting better though, so I'm hoping that I'll get Christmas all ready early next week.

In addition to having a hard time getting things done because of puking, I've had a lot of good stress. Last week, Festival of Trees ended. I love Festival so much! What a wonderful activity, and cause! I've been involved since I was 18, but I've kind of been on a hiatus since I got married. I figured that with all of Miles' time at Primary this year it would be a very appropriate time to pick things back up. I did a heart tree for Miles as a tribute to all the great staff that has helped him. I also did a music wreath.....mainly because I have an entire room full of bins of Festival stuff. One of the bins happened to have a bunch of music stuff in it. They both turned out great (thanks to the help of my mom)! Both sold at auction, which made me feel good. I can't wait until next year. I already know exactly what I'm doing (assuming that I can still get the not so traditional tree I need from Wasatch Shadows). I know it's going to be a big hit, but I'm not going to say anything else. It'll be a surprise. Well, not to the people I've already blabbed to.

My house isn't getting any cleaner on its own, and my keys aren't finding themselves (if you were a 17 month old, where would you hide mommy's keys?), so I'll go for now. Will write again after the appointment.

Keep warm. It's super cold!

4 for 4

Well, we're back in the hospital. That makes four for four for the last four months (that was a lot of four/fors for one sentence). I was getting kind of excited because we were almost through October without a visit. Shouldn't have had the thought, I guess. Anyway, they may as well just have a room set aside for us. Joking of course. I'm not joking when I say that I do keep a backpack in the coat closet ready with scrubs, slippers, underwear, toiletries, and a book. Easy access for when we have to take Miles in.....because he's always admitted, and we're always unprepared.



So, here's how it all went down this time, basically the same story as the other times. Thursday of last week, Miles was acting normal, having a good mischievous day. We were winding down around 8:30 or so, just getting jammied up and watching some good tv. That's when the puking started, violent puking, adult puking.....all over my "dry clean only" bedspread (why I let my 16 month old play on my "dry clean only" bedspread is another issue all together). I got him bathed and in fresh pjs. He was happy and playful, so I figured something just didn't agree with him. We went back to the bedroom (so I could finish watching the Thursday night lineup), and there it went again. He managed to cover the sheets, blanket, and all five pillows that were on the bed at the time. That's talent. He still wasn't really acting very sick, but the vomiting was much more than usual, and urgent care was closing in a half hour, so I thought I'd take him in just in case. It was a pretty good thing I did because he had a positive strep test. I wasn't suspecting that, but at least we got some antibiotics and got it taken care of. I think.



He did fine for the rest of the week and even went to half of church on Sunday. He's gotten quite naughty at church though (it may have something to do with the fact that our church starts at nap time, and he refuses to sleep at church). After he exploded an entire box of Reeses Pieces all over, we thought it would be best for dad to take him home. Monday he seemed fine; a few sneezes, but nothing significant. Tuesday he was a little more sneezy and had a runny nose, but we also got a few inches of snow that day, so a little weather related cold wouldn't have been a surprise. He was still happy and playful. He even took the place of my visiting teaching partner, and we went out on a couple of visits. (Sorry Brackens. I hope your Wii remotes still work.)



Wednesday was when things got a little more concerning. He added a mucousy cough to his sneezing, and his breathing seemed to be a little labored. We went into the pediatrician, and his oxygen levels were still in the high nineties. He didn't have a fever or anything, so there really wasn't anything to do at that point that I wasn't already doing (we started the inhaler every couple of hours when the runny nose started). To help wipe things out a little quicker, we got a prescription of baby prednisone to add to his smorgasbord of medicines. His breathing progressively got worse, so we went back to the pediatrician around 7:30, but his oxygen was still at 96, so again, there wasn't anything else to do other than let him rest and let the prednisone do its job. That night was not good though. Of course, right around the time that his doctor's office closed, it got really bad. Luckily, Ben got home a little early, around 10:00. We had decided to really try to keep him out of the hospital, but I needed Ben home to help me make the decision of what was "too bad". We kept giving him his inhaler and tried to calm him down and get him to sleep. That didn't work too well, and around 1:30 or so he started coughing hard enough to throw up. Back in the tub for him.....and back in the wash for all my bed linens. He calmed down quite a bit in the tub, so we tried going back to sleep. Again, he started coughing and threw up. We had another bath, then Ben gave him a blessing. Things didn't seem to be getting any better, so we gave in.



We decided to bypass Mountain West Hospital this time. All it is is an extra co-pay, so we just brought him straight to Primary. When we got here, his oxygen was only in the mid 70s. We (mostly me, Ben left after a couple of hours because he had school in the morning) were in the ER from about 3:45 to 8:00. While we were there, Miles was put on 2% oxygen, got suctioned and had a super neb. We got moved into a private room despite the busy flu season (one of the few benefits of having heart disease--private room priority). Thank Heaven! None of us had slept at all in the past 36+ hours.



Since then, it's been business as usual....except a little less of it.....and a little more of it. A little less treatment and a little more examination. He's only had a couple of nebulizers because the doctors are starting to doubt the effectiveness of the albuterol treatment for him. They are keeping him on some steroid maintenance treatment though. What the doctors are seeing and what they are hearing seems a little contradictory. Miles' oxygen has been low, and he has had very fast labored respirations, but his lungs are basically clear, making the doctors once again think that this is not asthma. Great! Only problem is, what is it? The closest thing to an answer I've been able to get is, "this may just be the way that his body is reacting to being sick". If this is how his body reacts to sickness, then the question returns, how can we prevent ending up here every time he gets a cold. Haven't really gotten any definitive answers to that one. Just the standard: wash hands frequently, keep him away from sick people, etc. We do have the maintenance steroid now that should hopefully help us through the winter season. We've also kind of come to the conclusion that unless we can get Miles to wear a surgical mask, church is just out the question for a while. Anyway, we're kind of back where we started.

For the short term update, he's doing great. They just took him off of oxygen completely. We're doing a little experiment now to see if he can keep his levels up without it while he's asleep. We were told that if he can, we might be able to go home today. That's one requirement. The other is that he eats something and keeps fluids down. (I forgot to mention that Miles had thrown up yesterday and had massive diarrhea last night and had to have an iv to replace fluids.) Well, he's asleep right now, and his oxygen is at 95. Beautiful! He wouldn't eat any of his breakfast this morning, but he did eat about a quarter of my bagel. Of course. He's still having a little drinking problem though. He's only had about an ounce of milk since he woke up, so I guess we'll see.

Anyhow, grug.....

I'm sorry to anyone who was planning on coming to my Halloween party. I was super excited about it, and Miles has about the greatest costume in the world that I was really looking forward to you all seeing. Hopefully, he'll be well enough to make a couple of costumed visits tomorrow. I'm sure that if we don't get out today, we will tomorrow. We better. Even the Halloween party here was cancelled. I feel so bad for all of those sick little kids that are going to miss all the festivities now.

Well, I guess that's about it. Long enough to make up for my last month and a half of nothing. I'll try to post a little more often. With the holidays on their way, I should have some fun and happy things to write. 'Til then...

Everything Stinks...Literally

I have the cutest, sweetest, brightest little baby, and I love him so much. That said, he has been nothing but naughty the past couple of days. It's been pretty rough because some of the meds that he is on are stimulants, so he has been totally wired for the past few weeks. And of course, my little Miles is terribly advanced, so I'm thinking that he's entering his terrible twos a little ahead of schedule. I suppose that saying he's been naughty is a little harsh. Let's just say that he is mischievious. He's really into emptying drawers, cupboards, and closets. He loves unmaking beds, and throwing food. He's into breaking things, and I can't let him have a bottle unsupervised because it's an awesome trick to squirt it all out over everything. I know that this is all normal baby stuff, but I'm a new mom, so it's all new to me. Plus, our sleep schedule is a little screwed up due to daddy's unconventional work schedule. We haven't quite gotten into a good groove yet.

Miles is like me and gets really restless being at home all day. It's usually not too much of a problem because we're frequently running errands, going to the post office, bank, or the grocery store. The car's in the shop this week, and the part still hasn't come in, so we've been stuck here. We've tried to play outside a little bit, but summer keeps being here, and I can't take the heat for too long. Plus, Miles is afraid of grass, and we don't have a swingset or anything, so there's not too much for him to do either. Anyway, I think that's kind of added to his wildness.

He was being particularly stinkery tonight while I was trying to get him to sleep. He kept throwing everything off the bed and messing with the computer. He was yelling and hitting me, and he wasn't about to stop anytime soon. It was time to go to the crib. He's good at napping in his crib. Not so good at sleeping the night there. After about 20 minutes of eardrum shattering screaming, I gave in and went to get him. He was so upset and crying so hard that he was choking himself. About one step into my bedroom, and he exploded with vomit, adult vomit. He was covered. I was covered. My floor was covered. I set him in the empty bathtub while I quickly cleaned the floor. Then I stripped him down and filled the tub. As soon as the diaper started coming off, the poop came out. It was a disgusting smelly ordeal to say the least.

Miles seems totally fine since I cleaned him up and brought him back in with me. Right now, he's still awake (in my bed of course) watching some Chinese cartoon that I've never heard of. I don't think that he's sick. I think that he just upset himself....which might be even worse. At least when you are sick, you eventually get better. In recent days, Miles has taught himself how to throw up. I'm not really sure how to fix that one.

The Not Quite as Big 2 8

I have to just start by saying that I am so sick of getting a paragraph typed just to accidentally brush the touchpad and delete it all. This happens almost every post. To all you techies out there, is there any way to avoid this? I'm terrible at not using a mouse. Anyhow.....

Today is Ben's big day, his 28th birthday. I went for a young one. (Marinda's got me beat though, so it's okay) Ben isn't much of a celebrator. Last night he told me that his only birthday wish was to sleep as late as he wanted today. Easy enough. He took the day off work today, so he was set. He did sleep until about noon, really not very late since he doesn't get home from work until after midnight. Then it was homework for a couple of hours. What a way to spend a birthday. Guh! After getting tired of that, we woke up Miles, so he could help daddy open presents. Miles got him a Pink Floyd t shirt and a Pink Floyd sweatshirt. I went and bought all of his favorite snacks and a football serving tray. I printed up a "gift certificate" good for a full day of uninterrupted football watching. Ben's not too big on presents, so I had to be a little creative. I thought that this was something that he could appreciate.

Right now, Ben is enjoying the cool night air at the Australian Pink Floyd concert at Usana. Pink Floyd is one of the very few musical groups that Ben likes, so it was kind of a no brainer when the concert landed on his birthday. Plus, it's kind of a tradition for his dad and siblings to go every year. I guess the date was just a little extra bonus. I hope he is having fun and hope that his birthday was super great.

The Big 3 0

For the past year, I've been telling Ben that he better plan something for my thirtieth birthday. When it comes to celebrating, Ben and I are polar opposites. I love big get-togethers. Lots of food. Lots of family and friends. And I plan things months in advance....long enough to change my mind on absolutely everything at least twelve times. Ben's ideal birthday would be an uninterrupted day of watching football alone in the basement with a bag of Ruffles and some dip. For this reason, I told Tami and Jenn and I'm sure others to make sure that Ben planned something for my birthday. Well, I'll have you all know that it's not Ben's fault that we're not doing anything (right now anyway). It's all me. With everything that's been going on these past couple of months, there has just been no time (or resources for that matter) to plan anything. And I didn't want to just throw something together last minute. I am determined on having a nice get-together sometime though, so stay tuned. I owe myself a party. Maybe Halloween.....I love making Halloween food.... Plus, I have all those fantastic pumpkin serving dishes. Man, I love fall!!!!

I woke up today kind of having a pity party for myself inside my head. I was a little disappointed that we weren't having a party, and we hadn't been able to really go out for our anniversary last weekend, and I had just found out that that extra $800 medical bill was not a mistake. I had kind of set myself up for a disappointing day. However, it turned out to be pretty good. After Ben left for work, Miles and I headed to the post office and then to the bank. In Tooele, everything lives in Walmart, including Chase Bank. I really do not love Walmart even a little bit, but out here it's kind of the only option you have. And, on occasion, they have some cute stuff. Really cheap stuff, but sometimes cute. I noticed that they were having a massive summer clearance sale. I always take a peak at the baby clearance stuff because Miles goes through clothes like it's nobodies business. They had a bunch of little hats on sale for $1, two of which I had almost bought a couple of weeks ago (at regular price). I picked them up. One was actually a 2-pack, so it was actually three hats for $2. Sweet! There was also a sun dress that I'd kind of had my eye on since the beginning of summer. It's just a really simple jersey dress that I thought looked really comfy and would work for church or everyday wear. It was on clearance for $7. I definitely deserved a $7 birthday dress. I also needed a 10-key. I'm having a really hard time functioning with the numbers at the top of the laptop keypad. I'd kind of pushed back buying one because they're about $20, and it just wasn't something I wanted to spend money on. Luckily, with school starting, they had cheap little $5 10-keys. Perfecto! It gets better though. After grabbing a little mini birthday cake (Miles and I are having our own little party tonight), I went to pay. When I got my total, I thought that my dress had been missed. Nope. It was $3, a $3 dress!!! I happily paid, and went to Redbox for a movie. They even had the movie that I had been trying every couple days to rent for the past month. The birthday gods have really been smiling down on me today.

Well, there's my silly birthday saga. Right now, I'm just waiting for my baby to wake up, so we can have our birthday party. We're going to eat hot dogs and birthday cake then watch 17 Again. Yes. That is the movie that I have been trying to rent. Embarrassing, I know. Zach Efron's cute though.

Home Again

Well, we're back. We'll see how long this time. I have a feeling that we're going to become regulars at PCMC. My "cousin" James joked that we've joined the PCMC frequent flyers club. Miles is already starting to feel somewhat comfortable there. He knows what's going on when we get there. He knows that he has to sleep in a crib, and he knows that he'll get poked and prodded and eat lots of medicine. He is quite the trooper. In the beginning of this whole ordeal, he wasn't very fond of the nurses, but now he smiles and says "hi" when he sees them. There is one in particular that he reaches for and really seems to like. I believe her name is Heather. A couple people there are starting to recognize us too.

So, what can we expect in the future? You know, I really can't say for sure. We're (including the doctors) all pretty sure that this will be an ongoing issue. They are officially calling this asthma. Not much of a surprise considering his family history. I asked a respiratory specialist if this was going to happen every time Miles gets a cold. That is esentially what has caused these past two episodes. He basically told me yes. Eventually, he will most likely be put on an inhaled steroid as a controller medicine. Why not put him on it now? Part of the reason is because they still want to observe him. There is the possibility that this was worsened because he was already in a fragile state due to his recent surgery. They also want me to meet with his physician about options. That will happen either tomorrow or Sunday evening (yes, Sunday, weird huh?). For now, I have been instructed to keep him away from anyone who is, could possibly be getting, or has recently been sick. I have to kick into Nazi mode again. If he gets a runny nose, wheezes, or even coughs, he has to have albuterol every 2 hours for at least 48. Crazy. If it keeps us out of the hospital, we'll take it though.

While at PCMC, I was required to go to a respiratory therapy class. Ben thought that it was kind of stupid of me to go because what was someone going to teach me about asthma? It was very informative though. I learned a lot that I should be doing that will not only help Miles, but will probably really help Ben and I as well. For one, it turns out that a swamp cooler is about the worst thing ever for an asthmatic. That's something that will take a little while to correct. In the meantime, we use a wall unit air conditioner and the super awesome fans that we got from Costco a couple of years ago. Luckily, we're going into fall, so that's good. I also learned that I need to put filters in my heat vents. I didn't even know that that existed. Makes sense though. Apparently, they sell them at Walmart and are pretty cheap. It's also really bad to use a humidifier. Interesting. And if we can avoid much carpet, that would be best. It would be especially important to not have carpet in Miles bedroom. Everyone knows that our flooring needs to be replaced. I'm all for limited carpet. I hate carpet. Too hard to keep clean. My question is this though, is there a way to transition from wood to tile without it looking stupid? I could use advice on this one. We also have to wash all bedding at least weekly in water at least 130 degrees. I also have to get hypoallergenic covers for the mattresses and box springs. In addition to those things, we have to test for triggers by slowly and systematically removing things from his environment like scented candles and hairspray. The biggest thing that they really hammered down was that he cannot be around people who are or have been sick, regardless of severity. In the therapists words, "I don't care if it is Christmas day. If there is a sick family member there, you stay home. You'll probably offend people, but you'll avoid this (referring to being in the hospital)". With all of this in mind, I hope that you will all understand (and I know that you already do) if we are not able to be at everything. We want to be. Believe me when I say I'd much rather be with family and friends than home alone-ish all day every day. And family, I hope that you all understand that with all of the household changes that have been strongly suggested, a big vacation has pretty much been bumped to the bottom of the list. A cabin trip is about where our vacation budget is right now. We just have to prioritize I guess.

Anyhow, this is what we're up against. We'll keep you informed of any changes.

On a super happy note, Miles is starting to wals. I can't even tell you how excited I was yesterday. He yelled, "Hey, mom.." I looked over, and he smiled big and walked about 5 or 6 steps to me. He knew what he was doing. Such a good boy!

Back Again

We might as well sell our house and move in here. This will be our third stay at Primary Children's in just over a month. Let's do a count. in the past 2 months, we've been to PCMC 7 times, admitted three. We've had 6 appointments with the pediatrician. He's had 7 chest x rays (and will most likely have another this afternoon). We've been to the ER in Tooele twice and the urgent care once. He's had 15 nebulizer treatments (that I remember) and has been suctioned 8 or 9 times. And let's not forget that little open-heart surgery. Poor little baby.

I suppose I should give you all an explanation for this morning's text. Basically, it's the same story as last time. Miles had a runny nose and a little cough yesterday. I was really hoping that it was just allergies, but I had a feeling that we'd end up back here. He was a little grouchy but mostly fine yesterday. Last night was a really bad night. He was super upset and wouldn't sleep. I could tell that he was very uncomfortable, and he was grunting, but he wasn't wheezing. This morning, his breathing was very labored. I gave him a bath in hopes that I could kind of calm things down until the urgent care opened. After his bath, things got worse, and Ben decided that we should just go straight to the ER. On the way out, he vomitted all sorts of mucous. That was the only thing different from last time. At the hospital, he vomitted more mucous and bile (I'll tell you a funny story later). It didn't take long for them to decide that he'd be safer coming to PCMC. Again, we were transported by ambulance, but this time we got the sirens. They were driving so fast! It was a little scary. Kind of felt like we'd tip over every time we made a turn. Anyway, we were admitted into a room about an hour and a half ago. Right now we're watching "Emporer's New Groove". He's continuing to have oxygen and occaissional nebulizers. I'm guessing he'll get suctioned again soon too. Sounds like he needs it. They're thinking of getting him on an inhaled steroid to avoid a hospital stay every time he gets a cold. It's still pretty up in the air though as to what is actually going on. So, that's what we know. We'll keep you posted on any changes. Hopefully, we'll just be here the night.

Now for the funny part. We were sitting in the ER at Mountain West talking to the doctor. He caught me glimpsing into the window. He asked me if I was checking my hair. I wasn't completely concious I was doing it, but I was. Then he came over, put his arm around me and said, "You're covered in vomit. I really don't think you need to worry about your hair". It brought a little bit of humor to an otherwise stressful situation.

Lazy Sunday

Not too much going on today, but I did want to post a funny little story. I think that everyone knows that Miles loves the telephone. Whenever I'm on the phone with you, you can probably hear Miles in the background freaking out. Or if he ever sees your telephone, he'll probably freak out until you give it to him. Over time it has progressed from just the house phone and cell phone to remote controls and the baby monitor. I get that. They kind of look like phones. He'll hold them up to his ear and say, "Hi" and pretend to have a conversation. He'll pass it to me and want me to talk into it and say that it's for him and give it back. Well, it's gotten a little out of hand lately. We're not just limited to phones, remotes, and monitors anymore. Now, everything is a telephone. Rubber ducky, phone. Bottle of medicine, phone. My very favorite was this morning. Miles had found a bag that had my old primary stuff in it (I taught sunbeams). There were a bunch of pictures from the "I am Thankful for my House" (or something) lesson. My silly little baby had a paper cutout of a dog in a doghouse up to his ear, talking on it. What a weirdo!

Quick Update

Today Miles had his first follow-up since his surgery last week. This one was just with his pediatrician, but things are looking great. His blood pressure is just about normal (92/67 I think), a big jump from where it was a week ago. His incision is healing very nicely, and all the bruising and blistering on his neck is almost completely gone. He is still on blood pressure medication as well as a diuretic. I understood the blood pressure meds, but I was curious about the other, so I asked today. Dr. Ditty told me that by taking the diuretic to help him pee, it takes some stress off the heart, doesn't have to work quite as hard. I would have never really made the connection. He could still hear a murmur, which I am assuming is due to his other issues. And he still won't eat much, but the doctor and I both think that that is more behavioral than medical. I'll keep trying new things. It was much easier when he wanted to eat everything. He's gotten quite picky these past few weeks. Anyhow, that's what's going on for now. He'll have another appointment at PCMC next week. They'll do an EKG along with a chest x-ray, so we should have a little more information then.

Bittersweet

It is truly amazing how resiliant little kids are. Miles is almost completely back to normal, even better than normal in some areas. And to think that only a week ago he was laying sedated in the pediatric ICU with a drainage tube sewn into his side, an iv in each wrist, one in his left foot, and one in his neck (not to mention the missing section of aorta). The human body is incredible!

I mentioned that in some areas Miles is better than normal. I think that he is very close to walking. In fact, he has actually taken a few steps (without noticing). I think that he is perfectly capable of taking more steps, but he won't do it when he is aware of it. He's really great at at walking while holding hands though, even just one hand.

He's also been talking quite a bit. Today, we were in the grocery store. He literally said hi to every single person we passed, regardless of if we had passed them before. It was an extra friendly day I guess. At one point he even reached out his arms to the woman behind us in line to pick him up. Luckily, she was holding her groceries, so her arms were full. I'm sure that she was a lovely woman, perfectly capable of cuddling a baby, but I feel a little funny about strangers picking up my child.

I have to admit that Miles' perfect recovery has been a little bittersweet. I had mentioned before that while we were in the hospital I spent quite a bit of time with my "cousins" James and Val whose daughter was awaiting a heart transplant. On Sunday night, I was checking my facebook, and I saw that my cousin Mindy had written on her wall that she was heartbroken for her cousin. My heart just sank. I hoped so badly that it was just general empathy. It was too late to call anyone to see if something had happened, so I just hoped and prayed all night. Unfortunately, I got a call from my sister the next morning to tell me that Vittoria had passed away the evening before. I think that that was amongst my saddest moments. She had overcome so much, and I just really had hoped for a happy ending. James and Val are some of the best people that I know. I hope that they know how much they are loved and how greatful I am to them for the advice, support, and the special time that they shared with me. It's such a blessing to know that families are forever.

The First Day Home

So, we're at home. We got released yesterday evening. I was very nervous about the idea of taking him home so soon. I mean, really, his surgery was only on Monday. I guess the doctors know best though. Luckily, Ben recognized my major anxiety, so he took a vacation day today, so we wouldn't be home by ourselves.

Things have been surprisingly normal today. Miles has been playing and is extremely excited to be home. He's been eating, which is great. That was one thing that we had some trouble with while in the hospital. I think that maybe the nervousness from being in an uncomfortable place made him lose his appetite. He also seems to be talking a lot more. It's really cute too because he's hoarse from the surgery, so everything is very quiet. It's not because he had any throat tubes (he didn't). It's actually because the nerves for the vocal chords are near the heart, and they had to be pulled aside in order to do the surgery. That was an interesting tidbit that I didn't know prior to the surgery. Hearing him try to laugh is the best because very little comes out. It's super cute!

Amongst all the happy and playfulness, there is still some obvious pain. We're still using the lortab every six hours. We can see that it's wearing off after the 6 hours, almost on the dot. Last night, Miles would moan, "ooowwwww", and hold his head. Then he would moan, "ooowwwww", and hold his chest. Very pathetic. Within a few minutes of taking his pain medication, he is happy again, so that's good.

I can't think of anything else to report, so this is it for now. I'll leave you all with an after picture, ready to take his bath on the first day home.

Another Early Morning

Well, we got moved into a luxury room last night. Miles was the only patient in the area that we were, so they moved us down a few doors into what I consider a hospital room "suite". It's a very big room with a convertible sofa instead of the fold out chair. It also has a nice comfy recliner (that I'm lounging in right now) and a couple of additional chairs for visitors. Best of all, we've got a shower in our bathroom. Yay! Now I don't have to spend the morning waiting for someone to come out of the shared shower room, hoping that someone else doesn't get to it before I do.

Miles is still doin great. We're still getting a lot of beeping from a high heartbeat and low oxygen, but this doesn't seem to be a major concern to the nurses. We had another chest xray at 6 this morning. Not really a pleasant way for either of us to spend our early morning. Needless to say, I think that we are both pretty tired. It's difficult to get a very satisfying sleep when people are coming in to get vitals and give meds every hour or so, then be carted to radiology early. Surprisingly, Miles has been very pleasant so far today. I don't feel very pleasant though. My lack of a decent nights sleep is catching up with me.

There is a chance that we may get released later this afternoon. They're watching things right now. The possibility was posed yesterday, dependent upon his vitals, x rays, and echo. After talking to the doctors and nurses this morning, it sounds like the xrays and echo looked pretty good, but his blood pressure is still pretty high, and that is one of the major concerns. They increased a medication this morning and drew blood for labs. I think that his release is dependent upon a lower blood pressure, so we're just waiting right now to see how the new dose works out. I guess we'll see. It would be so nice to be home where everything is familiar and where we could both have a chance to sleep through the night, but I am still really nervous to take him home. I have pretty mixed feelings about everything.

That's about it for now. Miles loves visitors, but be sure to give a call if you're planning on coming today. I'd hate for anyone to get here and find out that we weren't. Plus, you'll probably want our new room number. Thanks everyone for everything!

Morning Update

Things are staying on a steady course toward recovery. He's doing so well that there is a possibility that we might be able to come home tomorrow. Originally, we were told that he'd be in the PICU alone for 5 days, so this is really reassuring. In order for this to happen, his vitals (heartrate, blood pressure, respirations, oxygen, etc. ) have to stay at certain steady levels. We were finally able to get rid of the oxygen tubes this morning. I'm sure that Miles is thrilled about that. He learned to really hate them during his last stay. I think that bothered him even more than his drainage tube. (tube that was inserted into the surgery site to drain fluid--really gross), that was also removed this morning. I'm not positive if that's going to last though because his oxygen keeps dipping down into the beeping zone (anything under 90). Really, he should maintain high 90s. His heartbeat also keeps beeping because it gets pretty high. They don't seem too concerned about that one though. It seems like blood pressure is the most important right now. The sutures that reconnected his aorta are hair thin, so it's very important that his blood pressure doesn't get too high. Otherwise, the sutures could break, and we'd be in trouble. Before he can go home, he also has to have another echo to make sure that everything looks good after the surgery and to see if there has been any changes to his other problems. I am very interested to talk to the cardiologist after this is done to see if anything has changed.

So, all in all, things are good. Miles has been in a lot of pain, but that makes complete sense, and they've got him on a combination of Lortab, Motrin, and Morphine. When he's all drugged up, he's pretty happy and playful. I have to admit, that as excited as I am to get out of here, I'm kind of terrified to take him home. Luckily, we have lots of follow-ups with everyone that can make sure that things are going well. And the cardiology department here is awesome. I've called so many times with stupid questions, and they're always great at getting me answers and taking all of my concerns seriously. We're really lucky to have such a great resource locally.

Last, but not least, I wanted to pass on some information on a fund raiser for my friends' daughter who has been here waiting for a heart since before we were last here. They have had such a roller coaster ride the past few weeks and their great attitude with their situation and their concern over ours has been such an example of strength to me. They are wonderful people, and I hope with all of my heart that their little girl receives one soon. As you can imagine, a life full of heart surgeries, long-term hospital stays, and a possible heart transplant comes with a pretty big price tag. This weekend, a yard sale + is being held to raise money. I know that they would appreciate any donations/purchases. Here's the info:

Victory for Vittoria Fundraiser:
Yard Sale, Bake Sale, Boutique, Tool Sale
Saturday, August 15th 7am-4pm
4880 W. 6040 S. Kearns
(donations can be dropped off Friday 1pm-8pm)

A Long Day

Man, the day seems so much longer when I am here by myself. Ben went home late last night, so he could sleep for a little while and go to work today. So, it was just me and Miles. Actually, that's not true. I also had James and Val and their families and friends. It's been really nice to have friends here to associate with. I just sincerely wish that it were under better circumstances.

Everything seems to be going very well for Miles. He was released from the PICU this evening, and we are now in a nice private room on the third floor. Sooooooo nice! It's really great because I don't have to call someone to let me through the doors. I have space to stash all of my stuff. I can eat in here with Miles. I can use electronics, and I even get cell service in here. It's great. The only negative is that Miles no longer has his own nurse at his side at all times, so I have to determine if he needs more pain meds or if someone needs to be called. It's a little nerve-racking. The nurse is in here a couple of times an hour though, so I'm definitely not left to myself.

Before we were able to leave the PICU, Miles had to be able to keep his blood pressure at a reasonable level without his intravenous medication, he had to be able to maintain his oxygen, and they had to remove his neckline and the iv in his right hand. Obviously, he was able to do that. Almost all of his meds are oral now. He's still getting morphine through a kind of drip, but I'm not sure that there are other meds administered via iv. Everything is going into his mouth. He's very good at taking medicine this way. He likes it. The only problem is that a few minutes after we got up here (after a bag of teddy grahams, some graham crackers, and lots of milk) he vomitted all over. It was really horrific. I'm pretty sure that his Lortab came up with his dinner. Hopefully, that won't be a continuing issue. I can tell that he is in a lot of pain, and I would hate to have him not get the effects of his pain medication. The only other problem that we've run into is getting him to keep his oxygen levels up. They look really great while he has the tubes up his nose, and we can even lessen the oxygen, and still maintain the levels. They've tried a couple of times to take the tubes out though, and after just a few minutes, they drop way down. Other than that, he's doing very well. Very irritable, but in good shape.

Me on the other hand...... I thoroughly embarrassed myself today. I was wandering around trying to find a spot with good reception. Today was the blood drive, and I happened upon the room where it was being held. I've never given blood before, but I thought that I should do my charitable act for the day. They took it, and I ate a snack and rested for a couple of minutes. No big deal. I felt totally fine, and I was anxious to get back to Miles in the PICU. When I got back I was happy to see Rod and Cathy there with him (especially since he was wide awake). We visited for a couple of minutes. Then I started to feel really hot and nauseated. I sat down and thought that I was fine, and I was for about another minute. Then my vision started to go in and out, and my head went down on Miles bed. The PICU nurses had to help me over to their little station to lay on the desk. They gave juice and stood around me fanning me with their folders. It was really funny......until Miles started crying the most heart-wrenching cry for mommy. Of course, I started to cry and made myself feel even worse than I already did. I did eventually rejoin Miles, Rod, and Cathy, but I had to take my own little vomit bin, and I still feel really woozy. I told James about it, and he told me that that was why he did not had a bandage on his arm. A child having a major surgery plus inadequate food and rest does not make for a good blood donor. I learned my lesson. Pretty funny story though.

I suppose that's all for now. He's recovering great from this surgery, but it's still just a wait and see as far as the rest of his issues go. He will have an x ray every morning in case of changes, and he will have another echo before we are released, so we'll know of any immediate changes. We'll also have a follow up with his pediatrician a few days following, one here a couple of weeks following, and another one with the cardiologist (I assume for another echo) in a couple of months. In the meantime, visitors are welcome. Give me a call first though, so I can make sure that we are around and so I can give you our info. And of course, as always, use good judgement. No sickies.

Doing Well

From everything we've been told, Miles is doing fantastic. The doctors have all said that he sounds really great, and his vitals are all normal. He actually has a heartbeat in his foot and blood pressure in his legs now. Good for him.

We got to see him a couple of hours ago for the first time. He looked totally normal....only he has several tubes coming out of him (including one coming out of his neck). Seriously though, he just looks like sleeping Miles. After being in there for a little while, Ben and I got something to eat. Then we came back and sat with him for a while more. He's still really sedated, so it's literally just sitting with him. I can't wait until he wakes up.

Right now, we're hanging out in the PICU with James and Val and their families. We just got offered some pizza that smells really good, but since we just ate, I'll just smell for now. Anyway, that's all we've got for the time being.

I thought that I'd include a couple of before pics, so we can all remember his lovely unscarred chest. If one of you would like to bring your camera when visiting (cause we all know that Ben and I don't take pictures), I'll get some after photos too.

Done & Done

I apologize for the lateness of this post. I guess that there was less sitting around time than I thought that there would be, and the surgery went more quickly than I thought it would. (also, there was a lot more Mike Tyson's Punchout occupying the computer than I anticipated)

The surgery is over! Dr. Kaza, the great heart surgeon, said that everything went very well. He said that he was amazed by how mellow Miles was. He showed us the portion of the aorta that was removed. It was pretty crazy. The aorta should be shaped as a tube with an opening that I believe he said should be about a 1/4" in diameter. What we saw was a little tube with practically no opening. You could maybe fit a pin in it. That little opening was supplying his entire lower body (kidneys, intestines, legs, etc.) with blood. Hopefully, it's fully corrected now. Dr. Kaza said that we just have to watch him close for the next 24 hours or so. The sutures reconnecting the aorta are only about as thick as a hair, so it's all pretty fragile.

From here, Miles will go to the PICU for a few days (not the 5-7 as previously told), probably two or three. Then he will be admitted to a normal room for the rest of recovery. I'm still not entirely sure what the visiting situation will be like, but we'll be sure to let you all know. What we do know is that at some point, family members will be able to visit. Two people at a time will be allowed in the room, but no one under the age of 12 is able to visit. And if anyone is sick, please don't come....for obvious reasons. You can come visit us once your not all germy. :)

Right now, we are just waiting to be able to see him ourselves. If all goes as expected, we should get in there within about a half hour. I am so excited to see my little baby!

Explanation

I suppose that last one deserves an explanation. I can already tell that my little Miles is going to be a total computer geek. He loves the computer! It's difficult to get anything done on it if he is in the room. When we are on the computer, he'll sit behind the laptop screen and either peek around or pull it down to see what we're doing. Then he tries to sneek in a button. If he thinks that we've been on it too long, he'll even just close it while we're in the middle of something. He's also figured out the power button. That's caused some problems. Every morning, after Ben and I are finished checking our various online responsibilities and the laptop is set down on the bed, Miles pulls it up onto his lap, so he can do his "homework". Luckily, he's not quite strong enough to get it open all the way. Anyhow, long story short (not really because it's already long) I was checking out a blog this evening, and Miles did his peek around. He pushed some buttons that ended up opening a new post. I figured that since he was smart enough to do that I would let him finish the post. So, that post was all him. I even let him keep going until he somehow posted it. He ended up pushing the buttons that saved the post instead, so I figured that counted too. That's my boy. So advanced! Posting his own blog at 13 months. I'll bet your kids can't say that.

Miles' Blog

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Blood Drive

I was just reading my "cousin" (we're not technically related) James' blog. His little girl has been at PCMC for the last few weeks and is currently awaiting a heart transplant. He posted in his blog information on a blood drive that PCMC is hosting next week. So many people have asked me what they can do to help with our situation. While your blood most likely won't be going directly to Miles, this is a great way that you can support us. There are so many people out there whose similar situation will require blood. And from what I understand, the blood banks are low right now. If you are able, this would be a great service!

BLOOD DRIVE
Primary Children Hospital
Multipurpose Room, 3rd floor
Tuesday, August 11
7:00am-2:00pm

We'll be there, so feel free to stop by and say "hi".

Interesting Meal Choice

I've been really proud of myself for keeping up with the goal I made on Sunday. I have tried to do a little more each day to make my house more organized while keeping the things that I have cleaned clean. It's been two days now, and not a dish has sat in the sink. For most people this is normal life, but for those who really know me (and Ben for that matter) know that this is a pretty big challenge. Yesterday, I even got down on my hands and knees and scrubbed my entire kitchen floor. I need to go over it again with the normal mop though because I used too much liquid and it left spots.

I ramble. The point of that is that I decided to work on Miles' room today. I usually try to keep his room somewhat straightened, so this wasn't a stretch at all for me. However, it was pretty bad this time. He figured out that I keep all of his toys in baskets under the twin bed in his room. Before when I would take him in to play, I would pull out a few toys for him, and keep the rest hidden. So much for that. I was picking everything up when I noticed something funny. Once while we were shopping, I got Miles a mini nerf football to keep him happy. (a cheap toy makes shopping trips much more pleasant) It was lying on the floor with the rest of the toys, but half of it was missing. There were a few small remnants surrounding the wounded ball, but not nearly enough to complete the puzzle. So, when did my child decide to eat foam sports equipment? I wish that I had any idea how to work the camera (thank Heaven for family members that take pictures) and I would include a pic of the half eaten football. I may worry more, but Miles hasn't played alone in his room for a little while, so I figure it's an old snack, and he's doing fine right now. If anyone notices some blue and yellow pieces while changing his diaper though, we have an explanation.

Finally Done!

It has been such a great weekend! Really nothing too spectacular has happened, but the school semester is over, so that has made it wonderful. For those of you who might not be up to date, after Ben was layed off from Fidelity, he decided that it would be a good opportunity to finish up his degree. He's been taking online courses from the Utah State Extension. It was a great idea....in theory. Once Ben was back to work full time (an hour away-makes for 10 hour days), his 15 credit hours seemed a little too ambitious. And of course we've had the whole Miles thing that has only further complicated things. Needless to say, it has been a terribly busy couple of months. Every second of my poor husband's life has been occupied with things that I'm sure he'd rather not have occupy his time. As of yesterday morning, he was finished with the semester. It was a great feeling for me, and I can only imagine what a relief he felt. We all finally got to relax together a little bit. Ben and I dropped Miles off at Karri's while we went out for sushi. It was fantastic. Afterward, we went back and visited for a while. While we were there, Miles was pretty hyper. At one point, Miles even started yelling, "Mamma, mamma..." He wasn't yelling for me though. It was for grandma. Good job Miles, and congrats Karri.



Today, I didn't quite know what to do with myself. Usually, the weekend is filled with Ben scrambling to catch up on homework. There's usually a test that needs to be turned in by Sunday night. So, I try to keep Miles busy, so Ben can get his work done. Ben played with Miles all day today though. I decided that I'd make a nice Sunday dinner. I looked through the freezer, and I went a little overboard. I kept seeing things that needed to be used, so I kept going. I've decided that I'm a nervous cooker. Anyhow, if anyone is interested in roast beef, potatoes, carrots, onions, green salad, homemade biscuits with honey butter, lowfat chocolate chip cookies, apple pie, and or home bottled grape juice with ginger ale, come on over.



In all my baking and what not today, I've made a goal to be more domestic. Anyone who really knows me knows that I am not the tidiest person. I'm going to work very hard on keeping my house cleaner though. (we've had a lot of unexpected company lately, and I do not like embarrassing myself) I'm going to do my best to always clean up meals right away and not leave dishes in the sink. There's something about having a clean kitchen, specifically, that just makes me feel better. I have a really cute glass covered cake plate that I've also decided to always have a little homemade treat in, cookies, muffins, bread, etc.) I like baking, and this way, I'll always have a little something if people drop in.



All in all, it's been a great couple of days. School is done, the house is cleaner (notice how I still don't use "clean"), and Miles has been healthy. Now we just need to keep it up at least through this coming week. I'm guessing that all this will end once we have the surgery.

All Over the Place

Well, I've definitely noticed a difference in Miles since we've lessened his blood pressure medication. He had been taking the drug Propranolol three times a day. While he was taking it, he seemed to tire really easily. He didn't seem as happy as he usually was. I described him as "slumpy". He didn't seem as interested in playing. Most of the day, he just wanted to lay in my lap and watch tv or look at books. He took quite a few naps, and even when he wasn't napping, he might as well have been.

Right now, we're down to one dose a day. He's all over the place! Kind of driving me crazy actually....in a good way though. He's back to playing and getting into everything. One of his new favorite games is to bring me a diaper to change him. As soon as I get the diaper down ready to change him, he runs off as fast as he can. I grab a leg and pull him back. He acts like he's going to cooperate until I get his pants off. Then he's off again. Diaper changing is on the verge of requiring a second person. Luckily, this is typically a game that only happens with the wet diapers. Hopefully, it stays that way. Other favorite games include emptying all of the bottom drawers in the house and unfolding laundry as I fold it. And a bit of advice, if you are ever using the bathroom at my house, you will now find the toilet paper on the shelf behind the toilet. We can't keep it on the roll anymore because Miles loves to decorate.

In other Miles news, he has become quite the sharer. Be wary of any food that Miles offers you though. It has most likely already spent time in his mouth. He is always kind enough to test it out before giving it to others. He's very thoughtful that way. Don't tell Ben, but the other day we got a bag of those delicious pink and white frosted animal cookies. I came in the room and Miles had the bag. He was picking each cookie up, placing it in his mouth, and then carefully putting it back in the bag. It was pretty funny, so I was naughty and just let him finish. I left the bag on the bed though, and Ben ate them all. Mmmmm.... That's good eating.

Heart Disease

I'm going to try to make up for lost time and set a foundation for what I'm sure will be a great portion of my posts.

Miles has always seemed to be very healthy. Sure he's had his share of colds, but who hasn't? Miles has always been very active, and in my opinion, he's very advanced. We've kept on top of his well-child visits like good parents should. At his 9 month visit, Dr. Ditty asked if anyone had ever told me that Miles had a heart murmur. No. He explained that it was very normal for children this age as they were still developing, and it was most likely nothing. To be safe, he asked a few questions. "Has he had trouble eating?" "Does he tire easily?" At this time, Miles did have some strange sleep habits. Sometimes, in the middle of playing with his toys, he would just kind of tip over and fall asleep. He wasn't passing out, just falling asleep unexpectedly. After this little revelation, Dr. Ditty recommended that he have an echocardiogram.....just to be safe.

It was quite a while before we were able to get in to Primary Children's to see a cardiologist. On June 29th, my mother and I took Miles in to see Dr. Puchalski (because it was Ben's first day out of training at his new job). After a quick check-up, Dr. Puchalski turned to me and said, "Well, it looks like your son has some pretty severe heart disease, and is going to have to have heart surgery." It was definitely a shock, and the doctor could tell. He apologized for the bad news and explained what he had heard from Miles' heart. He had a coarctation of the aorta, a constriction of the aorta, preventing blood flow to the lower half of his body. He told us that if you have to have heart disease that required surgery, this was the one to have. While the surgery is still technically "open heart", it is relatively routine. They do about two a day at PCMC, and has virtually no risk associated with it. Before leaving, Dr. Puchalski requested that Miles and I come back the next day with Ben, so we could all talk. Miles also still needed his echo to see if there were any further issues.

Calling Ben was the biggest challenge. I can hold my composure as long as I don't have to talk. As soon as I open my mouth it's all over. I tried calling, and that didn't work out too well, so my mom had to explain it to him.

On the 30th, we went in for the echo. Including sedation, this typically takes about a half hour. I knew that something was wrong when an hour had passed. We sat in the room with Miles while the echo was being done. I had another clue that there might be more problems when the person reading the monitor kept bringing others in to look at it. They would point at some blurry image and whisper then point some more. Not very reassuring.

Next, we were taken into a room designed to look like a family room, to make us feel comfortable, I guess. Dr. Puchalski was in there with a woman he introduced as our social worker. Super. Something that requires a social worker. The good doctor explained that Miles has several problems with the left side of his heart. His mitral valve was allowing blood flow in both directions. His tricuspid valve was only bicuspid, and there was the coarctation, among other things. He said that four or more issues with the left side of the heart like this was called Shone's Syndrome. Currently, the problems (other than the coarctation) are too insignificant to operate on. Dr. Puchalski warned us that typically after the coarc surgery, the other problems intensify, requiring a second and maybe third surgery within the year. These other surgeries would not be as "pleasant" as the coarc surgery. They would have to open his chest cavity, and it wouldn't be quite so routine.

Right now we are just trying to get the coarc surgery taken care of. It was scheduled for 7/27. Unfortunately, today is 7/30, and we have not had the surgery yet. Last Wednesday, Miles got sick and had to be hospitalized until Saturday. The diagnosis was asthma exacerbation. Apparently, he had a minor virus that caused some breathing difficulty. The blood pressure medicine that he was taking in preparation for his surgery made his breathing problems much worse, so we had to ween him off of it. We were told that because of this we would have to wait 4 to 6 weeks for the surgery. Too long! After a discussion with a cardiologist, we got it moved up to less than 2 weeks. His surgery is scheduled for August 10th.

I know that that seemed long, but that was the condensed version. We'll keep working on this as we continue with this roller coaster.

Testing Out Blogging

Well, I've decided to try to join the rest of the world and attempt a blog. I'll be honest and admit that I have absolutely no idea what I'm doing, so this blog will probably suck rocks for a little bit while I'm still getting used to it. I am certainly not very tech friendly. In fact, Kevin, I need your help trying to make my printer work.

Anyhow, I've had a few requests and I did think that this would be a good way to keep people who are interested up on the family, particulary on my little baby. So, here is the launch of the Jackson family blog. Enjoy!