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.