Our St. George Family Vacation

Not that I didn't already know that it's been a while since my last post, but it was confirmed when I uploaded all of the pictures and they came out completely mixed up. So, I will just give you the basic run down of our little family vacation and you can just figure out how the pictures fit in to it.

Tim informed me a week before our vacation that he would not be able to come down with the kids and I but would have to come down a couple of days later. I was definitely bummed, but Tim needed to get some things done at work and didn't feel he could take the time off. Unfortunately, I couldn't change the dates, so there was nothing I could do but just roll with it. Anyway, the kids and I woke up early (5am) and made the 4 1/2 hour drive without too much trouble. We got settled into the condo we rented and of course the first thing the kids wanted to do was to go swimming.

Our whole vacation consisted of swimming, napping, swimming, golfing, swimming, mini golfing, swimming, reading, swimming, shopping, and then a little bit more swimming. Needless to say, we had a wonderful time with just our little family and we hope to make it a yearly event.

The only thing that put a little kink into our vacation was Ethan started having rapid respirations (65-75 per minute) and an increased heart rate the afternoon before we were supposed to come home. I watched him closely that day and although he was acting fine his respirations never resolved. I woke up around 5:30 (the morning we were supposed to leave) to find his respirations were still in the low to mid 70's. I called the on-call Cardiologist at PCMC because I was starting to get bugged that his breathing wasn't resolving. I wasn't sure if we should come home and have him looked at PCMC or if we should take him to the Emergency Department in St. George before we made the long drive. Anyway, although there were no other symptoms and he was acting fine, the Cardiologist felt that he should be seen that day and since the cardiology clinic was closed due to the holiday (it was July 5th) we should just go to the ER in St. George. He felt that it would probably be best to have him checked out before we left for home.

So, even though it was not the end of our vacation that we had planned, it turns out that everything was fine and they let us go home after about 5 hours in the Emergency Department. They did x-rays, an EKG, and lab work and everything came back normal. They didn't see any signs of heart failure, dehydration, kidney troubles, infection, or anything abnormal for that matter.

His breathing continued to be fast the rest of that day as well, but by Tuesday, he was back to his normal self. I still have no idea what was wrong, but I am very relieved that it was nothing serious. Ethan does have a routine appointment with his cardiologist next Thursday, so we'll see what he thinks during that visit.

Well, that is the basic run down of our 5 day St. George vacation. Here are the pictures to go along with all of my jibber jabber. Again, sorry for the randomness of the pictures.


They had this simple mini golf course in the club house of where we stayed. The best part is that it only cost $1 and the kids loved it.

Ethan was not happy when I woke him up and told him that I was taking him to the hospital. He kept telling me that he didn't want a poke, but he stayed calm and didn't panic too much. Unfortunately he did end up having to have an IV placed and although he was upset and cried, afterwards he told me that "he was brave". He is such a sweet boy.

This picture of Spencer was taken the night of the city fireworks. It was a fun fireworks show and of course, the kids had a great time.

This is how Ethan would watch the older boys when they would play their video games on the TV. He honestly loves his brothers and admires anything that they do.

There was a kiddie pool that was perfect for Ethan to play in. It was a little bit warmer than the big pool and although he liked the big pool, his lips turned purple a little to quickly for my comfort. It didn't take too much encouragement to keep him in the little pool once he realized that the temperature was a little bit more pleasant.

We honestly spent about 4 hours each day in the swimming pool. We'd usually go down for 2 hours in the morning or early afternoon, and then another 2 hours after dinner. Needless to say, we went through a LOT of sunscreen.

Spencer had been grounded from his video games for a little while before our vacation. However, he had no problem making up for lost time while on vacation.

These last 2 pictures were taken on the 1st day that we arrived. The kids were SOOOOO excited to go swimming. I knew that I would have to be quick with the camera once the sunscreen was on.

We've been doing a lot this summer and we have been keeping very busy. I will update again after Ethan's cardiology appointment next week. Until then, take care!

---Allison

Birthday Catch-Up Post

So I don't have any pictures of Spencer on his Birthday. He is at the age where it is hard to get him in any pictures. However, this is a quick re-cap of our birthday festivities.

Gavin got a Nintendo DS for his birthday. He was VERY excited about it.

He also loves SpongeBob and puzzles. So this floor puzzle was a good find.

My Birthday was yesterday. A sweet friend of mine (thanks again, Rachel) brought me by this cute clown ice cream. I used to admire these from afar when I was a little kid. It was fun to finally get one.

We combined Emily and Ethan's family party and had a SpongeBob theme. The kids had fun with the extra hats.

Ethan opening one of his presents.

We went to Chuck-E-Cheese on Ethan's birthday to celebrate. He LOVED this dog ride and had a hard time sharing with the other kids who wanted a turn.

These pictures are a little out of order, but Ethan simply LOVES cupcakes. He had about 3 the night of his party.

Emily and one of her gifts. The kids always get spoiled and love every minute of it.

Emily making use of her extra hat.

This is my niece Addison. She is the cutest little bug ever. Her mom says that this is her "flirting" face. She is honestly too cute.

Again, out of order, but you can see how delighted Ethan was when riding with his dog at Chuck-E-Cheese.

Spencer and Emily playing one of their favorite games. Spencer was too into it to even look at me for the picture.

Gavin and his tickets. He loves shopping for prizes with his tickets before we go home. The prizes are totally lame, but hey, whatever makes them happy.

Ethan waiting at the table for another turn on his dog ride. He really had a hard time letting the other children have a turn. It's so hard being 3.

Emily is such a poser. She is my one child who doesn't EVER shy away from the camera. She LOVES being in the spotlight. It makes me wonder what she will be like when she gets older.

Anyway, I still have lots of pictures from a previous Hope Kids event, a family wedding in March, and from Spencer's band concert last night. But these will have to wait for another time.

Also, we are finally going to have Emily's friend birthday party tomorrow (I know, 3 weeks late), but she wanted to go to a fish farm and so we've had to wait for good weather. Anyway, I am sure I will have some pictures from that as well. Until next time! Muah!

---Allison

Really, Are You Surprised?

I'm hopeless. Even when I set a goal for a weekly update, I still can't get my rear into gear. In my defense though, we have been busy.

We've had all 6 of our birthday's in the last 2 months. I also started watching my neice 3 days a week which has kept me busy. I realize that this should just give me some material to post, but, as you can see, I am struggling to make the time to sit and do some posts.

We've also been busy with the Springs sporting season. Both Gavin and Emily were in soccer (I say were, because Emily's last game was Tuesday). Between the 2 of them we've had between 2-3 games a week. This was a cold and rainy season, so it was hard to get any "action" shots. We were either bundled up in a blanket, hiding underneath an umbrella, or in the rush to get people where they were supposed to be, I would forget my camera altogether.

Spencer has also been very busy with his school track team. He has been training for the discus and shotput events. He has worked very hard and has really enjoyed being a part of the team.

Tim and I also went out of town last week. We went to Phoenix for a DRI conference for Tim and had such a fun time. It was a totally adult trip and I couldn't have needed it more. It has been a long and stressful winter for the both of us and it was so nice to just spend some time together as well as some other very fun and entertaining adults.

We stayed at a really nice resort and spent lots of time relaxing and basking in the hot sun. Also, Tim's boss was extremely generous and bought a round of golf for him (his favorite thing) and a massage for myself (my favorite thing) while we were there. The whole trip was heavenly (minus the day I was sick, boo hoo). It honestly couldn't have come at a better time.

Anyway, I PROMISE I will do another "catch-up" post tomorrow with a lot more pictures (my computer is running really slow right now for some reason). But until then, I can at least give you some of the sports pictures that I did take.

---Allison

A New Post

So, I needed a few reminders. And I don't have any pictures to post since I keep forgetting my camera when I go anywhere. But, at least it is a post, right?

Really, our life is pretty mundane. In fact, you really don't have to continue past this point unless you are REALLY interested in how boring our lives are. Anyway, if you are still reading, here is what we've been up to, minus the visual additives.

Spencer is on a turkey hunt with my Dad and my brother. He has been struggling with following through with his school work lately and this was used as a motivator to keep his grades up. He went last year and had a ton of fun. He is such a low key kid, it's nice to know that there are still a few things that motivate him.

The other kids and I went to a Hope Kids activity last night (of course, I forgot my camera). Emily was really excited when she found out that the Chanel 5 News was there in an attempt to raise awareness for the group since it is new to Utah. However, when we sat to watch the 10:00 news, the story must have been bumped. There was a small earthquake somewhere here in Utah and I guess that was more important. Emily was really bummed about it because she was really looking forward to seeing herself on TV.

I also took Gavin and Ethan to the park today (of course, I forgot my camera). They have had so much fun now that the weather is getting nice enough to play outside.

I've also started watching my niece 3 days a week for my sister Angela. Both Gavin and Ethan really look forward to the days that she comes over. Although Ethan really enjoys her, he is also trying to adjust to having someone younger than himself needing so much attention. He has actually been pretty naughty lately and I think this has contributed to it a little bit.

As far as Tim, he's just as awesome as ever.

Anyway, so there is my post as promised. I will try and have pictures for the next time I post.

---Allison

Let's Make A Deal

I just seem to be getting worse and worse at this whole blogging thing. Here's my solution. I am going to try and make a goal of posting at least once a week. If I do more, then I'll consider it a bonus. If I don't post at least once a week, feel free to heckle, complain, remind, taunt, bribe, or leave guilt provolking comments on my most recent post (which go straight to my e-mail) and you can expect a post within 2 business days. Deal? Deal.

We've actually had a lot of fun stuff going on that I can blog about. So hopefully, I can get into the swing of things soon and be more consistent.

To celebrate my re-emergence into the blogging world, I will start by posting this video that I took of Ethan last night. He is a little out of breath because he had be doing this for at least 5 minutes before I started taping. For only having half of a heart, this little guy has more heart and soul than most. He's my little Rock Star!

Oops, Sorry :(

Tim has politely informed me that I have been slacking on my blogging responsibilities. And going back and reading the last post, I will have to agree with him. So, first my apologies, and then second, a quick update. It's hard to remember to blog when things are running smooth, regardless, I will try and be better about making regular posts.

In my previous post, I had mentioned a clotted PICC line. Tim was planning on taking the kids on the Trax train to visit the Christmas Village in Ogden with my brother Darren and his kids that night and weren't sure what would happen now that Ethan's line was clotted. Well, we contacted the on-call nurse and she too had plans that evening to visit the Christmas Village! So, Tim actually met up with her there and they were able to fix his line. I didn't go and missed "all the fun". At the time I was still struggling with the blah's and so Jenn (my sis-in-law) and I went and got pedicures while the guys took the kids.

Ethan has since had his PICC line pulled (on New Year's Eve) and has loved being able to have baths and showers again. I was going to make an event out of his first bath since his surgery but I was sleeping after one of my graveyard shifts and Tim let him get in the tub with Gavin while they were getting ready for church. So no big event with new tub toys and pictures, but he is clean and happy all the same.

Christmas was really nice. The kids all loved their gifts and I ended up really enjoying myself and having a nice day. Tim surprised me with some beautiful diamond earrings and a garnet bracelet which I am sure helped pull me out of my funk. Now that I am a little bit removed from things I can see how emotionally stressed and tired I was even though at the time I didn't think I was.

New Year's Eve was also a lot of fun. We had all of my family (which is a HUGE group) come over to my house for a night of food and fun. We played games and visited and ate way too much. I had already gained some weight from the stress of Ethan's surgery, but that combined with the holidays didn't help out much. I have already started losing some of it but I still have a long way to go. I am jumping on the weight loss bandwagon and I am hoping to not fall off again any time soon.

Also, since the last post we have had another cardiology appointment. They decreased Ethan's Lasix to just once a day. So we have 4 pills in the morning and just 1 pill at night. I can't tell you how nice it is not to have to set my alarm clock countless times a day to keep track of medication times. They said that he looks great and that they don't need to see him for 6 months! Yeah! We still need to keep him away from germs over the winter months, but honestly, I am starting to feel our life getting back to "normal". Also, just in case you were wondering, Ethan's CRP level has never actually gone back to normal. They drew some labs at his appointment last Wednesday and although down it was still 1.4 (which was down from 1.9). Since Ethan has been asymptomatic, our Cardiologist felt that it was close enough to normal and trending in the right direction that we will call it good.

So, as you can see, things are settling down. Tim got a new calling at church to be 1st counselor in the Elder's Quorum. I've started back to work and although I was a little nervous to go back after having 2 months off, it was really nice to see some friends and to start making a little bit of money to help cushion things a little bit.

I apologize that this post is long and without pictures. I just figured I'd better get it all written and then in the next few days (or week) I will do a post just of pictures to get things all caught up.

I hope that your holidays were memorable and that you will all have a blessed new year. Thank you for your love and support during these last few months. I don't know how we would have made it without all of your love, prayers, and support.

---Allison

The Results Are In

The results from Ethan's CT scan this morning are in. Nothing. No bone infection or anything else that might be odd. They also drew some labs to check his kidney function and they all came back good.

So, here is the "new" plan. We will stop his Vancomycin on Christmas although we won't pull his PICC line just yet. We will keep it in and watch him very closely for signs of infection (like fevers) until next Wednesday. It will be then, that they will draw labs again and see what his CRP has done without the antibiotics. And then obviously, depending on the labs, decisions will be made from there.

The reasoning behind this (according to our Cardiologist who consulted with the Infectious Disease doctor) is that sometimes when you have long term IV Vancomycin therapy, the CRP won't clear completely. I pray that this is the case and that we will be able to discontinue everything in a week.

However, here is the catch. This is all depending on his PICC line working. I don't know what they did at the hospital, but when I went to hang his 4:00 dose of Vanco, his PICC line is clotted off. I've got a call into the Home Health nurse to see if we can (again) TPA his line open and get it working. If it doesn't work, then all of the previous jabber might not be true anyway.

So, we will wait and see what will happen. I am going to go call the nurse back now since I've given her 40 minutes, and heaven forbid, I'm not very patient these days.

---Allison

Sigh

So we just got Ethan's lab results back from his lab draw yesterday afternoon. His Vancomycin level is getting too high and so they need to adjust his dose so that it doesn't cause kidney damage. I was hoping that maybe they could just keep him on the same dose but just spread it out to twice a day instead of every 8 hours. This way I could get a full night's sleep. But instead, I was told that the Pharmacist will adjust the dose and send us another delivery of the Vancomycin.

As far as his other labs go, his CRP is slowly going down but is still 2.9 (not even down 1 full point from his last draw) and his ESR has mysteriously gone back up to 29. He is acting fine, no fevers, and his lump is still gone. I was really hoping that we would be done with all of this and given a bill of good health today. I am sad and frustrated that things aren't resolving like they thought it should be.

I spoke with Dr. Williams (our Cardiologist) and he wants Ethan to have a CT scan tomorrow (at 9:00 am) to see if there are any pockets of infection or any signs that the infection is in his bone. And to be honest, I am not sure how this would effect or change what we are currently doing anyway.

This wasn't exactly how I was hoping things would turn out but I guess we can only do what we can.

I will let you know when I hear back on anything new.

---Allison

Where's My Christmas Spirit?

Warning: This post contains, in part, the appearance of complaining, whining, venting, guilty feelings, and other crazy nonsense. Read at your own risk.


I have to admit that I've been having a hard time getting into the Christmas spirit this year. On a day to day basis I don't think I'm feeling completely overloaded. However, my actions might speak differently. I have completely forgotten (a couple of things) that I had committed to being a part of. Things that I wanted to do. Things that make myself (and others) look bad, and I REALLY hate letting people down.

I finally put my Halloween and Fall decorations away just a couple of weeks ago. There is dust an inch thick where my decorations used to be and to be honest, it will likely remain that way for a while. And since I am on this honest kick, I was even OK without putting up a tree this year (despite my kids begging me, which makes me feel like a horrible mother) and finally told Tim that if he wanted a tree he would have to be in charge of it.

I didn't even start my Christmas shopping until tonight (anything that has been done, has been done by Tim up to this point). I don't feel depressed, or angry, or sad, or even stressed. I really don't know what my problem is. I just feel blah.

Yes, we've had a few curve balls thrown at us the last few months. We've obviously had Ethan's surgery and subsequent infection which has really drawn out his whole healing process. Our "reliable" vehicle has broken down TWICE in the last 2 months which has cost us an arm and a leg to fix. And then to top it off, yesterday I got a LARGE bill in the mail for Ethan's surgery which should have been covered by our insurance, but, after an hour and a half phone conversation (and several tears), I was told that we were now responsible for it (a very long and complicated story). Seriously?

Well of course I panicked and called Tim at work over this bill. But to my surprise, he remained very calm and reassured me that everything would be worked out and even if it meant that we would have to pay more than we had expected, we are OK because we still have Ethan. And not only do we still have him, he is happy and he is healthy (OK, cue the guilt).

Well to make this story quick, Tim was right. His boss was amazing and immediately got things taken care of. I get teary thinking about it because honestly, that was my "straw". That one bill is what threw me over the edge, and it didn't need to. We're fine. And like Tim told me, we would still be fine, even if things didn't go as planned.

So where is my faith? I've been shown time and time again that things work out the way they are meant to. Do we have a lot of bills? Sure. But who doesn't? Life happens. Cars break down. Hospitals want to get paid. Kids want to eat :).

Are we rolling in the dough? No. But, can we pay our bills? Yes. We have good jobs. We have 4 priceless children. We have a wonderful marriage. We have our health. We have a supportive and loving extended family. We have good friends. We have our educations. We have a nice home. We have great neighbors who care about our family. And when it all boils down, we are happy (although I am aware that it may not seem like it in this venting session of mine).

I feel strongly about showing gratitude and being aware of the things that we DO have in our lives. My list could go on and on for what I am grateful for. Honestly, I count my blessings daily. I really do.

But all of that just makes me more confused and feeling guilty. Knowing all of this, why am I so blah? Why can't I FEEL the Spirit of Christmas? Why can't I get myself in gear? I'm going through the motions but I just can't seem to get there. I don't want to make excuses for myself. Everyone has their own trials and mine, although they may be different, are no worse than anyone else's. In fact, I have it better than a lot of people out there. So why can't I get that feeling? Why?

This is the point in my post where any suggestions will be welcomed.

For what it's worth, Merry Christmas!

---Allison

Infectious Disease Appointment

Ethan and I went up to PCMC today to have a consult with the Infectious Disease doctor. Basically, they said that he looked good and to continue with the Vancomycin for the time being. We will have labs drawn again on the 21st. If the numbers are normal, then we can discontinue the antibiotic treatment and pull Ethan's PICC line. If the numbers are staying somewhat stagnant or even increasing, then we will have further tests done (like a bone scan) to determine if there is a pocket of infection or something else that is resisting the treatment. I don't expect this to be the case (think positive, right?), but we will just keep doing what we are doing until then.

This is Ethan's most recent delivery of his Vancomycin (one week's worth). Too fun.

---Allison

Bummer

Ethan had a cardiology appointment yesterday. His chest x-ray and EKG both looked good. He still needs to stay on the oxygen at this point because his liver is still enlarged. This should improve over time as his body normalizes to the new pressures from the Fontan, but until then, the oxygen will be helpful at night. Some good news is that we were able to go down on his Lasix to just twice a day which will be nice.

At this appointment we had some labs drawn to check his CRP and ESR again. I just got a call (from the doctor that we saw yesterday), and she consulted with the original Infectious Disease doctor that we saw before we were discharged from the hospital. The long and the short of it is that both his CRP and ESR are coming down (his CRP was 3.7 and his ESR was 21). The bad news is that the Infectious Disease doctor felt like at this point, they should have resolved all together. So what this means is 2 MORE WEEKS OF VANCOMYCIN!!!! Ugh.

I shouldn't complain, but I was REALLY hoping that Friday would have been our last day of the PICC line and the Vanco. I guess that we will just keep plugging away at this infection and hopefully he will be able to have his PICC line out by Christmas.

Sigh.

---Allison

I'm Confused

Are any of you lab result brainiacs? Home health came by this morning to draw some labs on Ethan and to do a dressing change on his PICC line. This time they only drew an ESR and CRP (they didn't draw a CBC, I think because it's been normal for a while now). Well, the nurse called a little bit ago and his CRP is now 5 something (remember it was as high as 25 but should be less than 0.8). But the weird thing is that the ESR is going UP! It is now 33 (on the last post I said it was 32, but I was corrected today and it was actually 30). The normal (I think) should be 5-9. These tests both indicated infection or inflammation.

So this brings me to my question. The lump looks WAY better. Ethan is acting fine. I would think that with the CBC being normal and the CRP going down, that the infection is almost better. But why would the ESR go up? Does anybody have any ideas? If you have any, give me your ideas.

Ethan has a cardiology appointment next Wednesday. I'll be sure to ask then. But in the meantime, help me brainstorm what would be inflamed and/or infected.

---Allison

Just Some More Pics

Emily and Ethan were lying on the couch watching t.v. the other day. Usually Ethan and Emily don't snuggle very often. So when they were, I thought I should take a picture.

Doesn't Ethan's lump look good? I got a call yesterday from the home health nurse saying that she was coming today to pull Ethan's PICC line. I questioned her and told her that this didn't sound right to me since the Pharmacist told me that an additional 2 weeks of Vanco had been ordered. She just said that she had an order and that she would be by to pull his line in the morning. Well, I didn't like that answer.

So, I called PCMC. I talked with the Caridothoracic Nurse Practitioner (a different one than we've been seeing) just to see if this is what was supposed to happen. She told me that she did in fact order the PICC line to be discontinued (because of what she'd been told from the previous nurse practitioner). I asked her what the previous labs had been and she said that his CRP had only dropped from 6.7 to 6.3 and that his ESR had "dropped" to 26. What!? When we were discharged, the Infection Disease doctor said that we could go home as long as his ESR was below 20 (and his was 18 at that time). I guess that when the lump got huge, his ESR went up to 32, but I obviously wasn't aware of that. So anyway, after talking with me, she wasn't sure what was going on either.

So, to make this long story short, she called me back, apologized for the mix up (and the possible consequences), and then thanked me for following up and questioning something that didn't make sense to me. So, not to pat myself on the back, but, I was really proud of myself for not letting something stupid happen and make Ethan go through having to get another PICC line.

This is just a picture of Ethan "rockin' out" while Spencer is playing Guitar hero. He is obviously starting to feel better. I sure love this little man.

---Allison

No Go

Ughhhhhh. Two more weeks of IV antibiotics.

I am not sure what the exact numbers were from Ethan's labs this morning (because I've only heard from the pharmacist, not the nurse yet), but the pharmacist said that he had been notified that Ethan's labs were not down enough to discontinue the PICC line and that they wanted to do another course of antibiotics for 2 weeks. He will still be on the vancomycin every 8 hours which means 2 more weeks of up twice in the middle of the night for medications and line flushes. I was really looking forward to a solid night's sleep tonight! Oh well. There are worse things out there.

Even though this is disappointing, I have to be grateful that there IS a treatment and that we are all together as a family.

In other news, Gavin stayed home from Thanksgiving yesterday with Tim and Ethan because of a fever of 102. He had no other symptoms and so I wasn't too worried. Today, however, he just doesn't look very good and his breathing sounds really tight and raspy. So, in light of this new development, I will be taking him into the doctor's today. I am hoping that it is not H1N1 because Ethan just barely got his vaccination 2 days ago and it would not be protecting him at this point. Hopefully we can get Gavin healthy soon and keep the bug from spreading around. The last thing Ethan needs is a nasty cough or lung issues so soon after surgery.

I'll post as soon as we know what is going on with Gavin. Keep us in your prayers for something mild.


** Update**

Tim took Gavin to the doctor and he has been diagnosed with pneumonia. They didn't do a H1N1 test (which I wish they did, just in case), but they didn't feel that he had the right symptoms. After they did a chest x-ray they felt that pneumonia was the culprit of his difficult breathing and fevers. I am surprised on how fast it came on. They've put him on a 10 day course of oral antibiotics (Omnicef) which will hopefully start helping soon. I will keep a close eye on him because his breathing seems to be getting a little worse as the night progresses. I hope this isn't contagious!

---Allison

Clinic Update

We went to our post-op clinic appointment today. We had to drop Gavin off at my parent's house and when I told Ethan that we were going to "the doctor's office", these next few pictures show just how upset he was about it. He just kept crying and saying "No hospital, no hospital!". I seriously think that we have caused some major anxiety. I hope he gets over it.

As far as his appointment went, I am very pleased. We are able to go down on 2 of his medications to just once a day. They also said that he only has to wear his oxygen at night now. His chest x-ray, EKG, and vital signs all looked good. As far as "the lump" goes, they are pleased with how much smaller it is getting. All of his labs from this morning are good (his CRP was 6.7) and trending in the right direction. Ethan's last dose of Vancomycin should be this Friday. They will have more labs drawn then, and if everything looks good, they will pull his PICC line! Yeah! If that happens, he can also FINALLY have a bath.

After his appointment, we met Tim for lunch at Winger's. Ethan was again rebelling against taking pictures by pulling his oxygen down. Little does he know that it doesn't matter because he doesn't have to wear it during the day anymore. (This isn't a very flattering picture of myself, but it does give me motivation to start hitting the gym again. UGH.)

He was SO happy to leave the hospital and not "sleep over" there. He was all smiles once we were in the car to come home. The only "owie" that he had to get today was for his H1N1 vaccine. I am glad to have him finally be able to get it. Although we will have to give him another one again in a month as a booster. We'll just worry about that then.

And last but not least, we came home from Ethan's appointment to find this amazing fruit basket. It is HUGE! The kids are so excited to tear into it. I just told them to let me take a picture of it before they tore it apart. Thank you SO MUCH Betty and Larry. You are both so wonderful and we love you dearly.

I'll update again on Friday with those lab results and if we get to remove the PICC line or not. In the meantime HAPPY THANKSGIVING!!!

---Allison

No New News, Just Pics

I know that this picture isn't the greatest but I was just trying to get an image showing just how scrawny this little guy is now (this picture doesn't even give it justice). He officially lost 2 pounds (real weight, not water), which doesn't sound like a lot, but on this little man, it is.

These 2 pictures were taken before his haircut this morning. I needed to place new stickers on his cheeks for his oxygen, but his hair was too long. I also wanted to show you that his lump really is shrinking. Go Lump, Go!

These last 2 pictures were taken just after I cut his hair and changed his arm wrap (he likes to pick out the color). He wasn't happy about the whole process, and it's not the best haircut that he's had, but at least he's not so shaggy. It will look even better when it is actually styled.

Both Gavin and Spencer have been neglected in the haircut department as well. So little do they know it, but they will be ambushed as soon as they get home today. Why do boys hate getting their hair cut? I like getting my hair cut. Silly, silly boys.

---Allison

On The Right Track

I think that we are finally on the right track! Ethan's CRP this morning went back down to 8 and his WBC's are still looking good. He still has not had any fevers and "the lump" is finally starting to get smaller (it's still bigger than when we were discharged to come home, but hey, progress is progress). His electrolytes are a little off. His potassium was 4.9 so we will decrease his Aldactone (that's the diuretic that spares potassium) to just twice a day. Also, his sodium was low at 2.1 so they said to have him eat some potato chips or other salty foods.

We weren't able to draw his Vancomycin level this morning because when I went to hook him up to his IV at midnight, his PICC line had clotted off. I have to say that having that happen was just not what I needed. Especially since the morning labs depended on me giving that medication on time (not to mention that they couldn't draw labs through it if it was clotted off).

Well, I was already in a bad mood when I called the on-call home health nurse. But when she told me that that there was nothing she could do about it, and then proceeded to tell me that "It wouldn't be the end of the world" if he missed a dose of his antibiotic (or had to get poked for his labs in the morning), well that was not what I needed to hear. Seriously, can you say FURIOUS! I was honesetly livid at this point. It could of been since I was tired and just wanted to be asleep, but honestly, this nurse was absolutely zero help and just kept giving me excuses as to why she couldn't help me when I would press further and ask questions on what the next step would be. She finally just told me to wait until the day nurse came and that she could take care of it (which by the way, she would not have had what she needed to help me since this nurse wasn't going to call her to let her know of the problem beforehand). Although frustrated, I accepted her answer and went to bed.

So to make a long story short. I called our "normal" home health care nurse before she came to let her know that his line was clotted and that he needed TPA to get it opened. She made an extra trip to her office, got a doctor's order for the TPA, and then came down. Luckily, the TPA did the trick and busted up the clot. She was able to get most of the labs and I was able to give him his morning dose of his Vancomycin.

Needless to say, I called and complained to the manager this morning, because this could have (and should have) been done last night with my first phone call. I can't stand to be left hanging, especially if it is your job to help me.

So, the plan now is to go to his scheduled clinic appointment Wednesday morning. Home health will come prior to his appointment to draw his labs (and check his antibiotic level this time) so that they will have the results when we get there.

Overall, I am feeling much better about how things are progressing. I just hope that it will continue to move in the right direction. As far as Ethan goes, he is also beginning to act more like himself (which means that he is unfortunately putting up more of a fuss with wearing his oxygen), but hey, feisty is good.

As always, thank you so much for your kind words and prayers. And to Liz and Todd, we got your care package today in the mail and the kids LOVE it (and I love the M & M's). You know our family well. Thank you SO much!

---Allison

"The Lump" Update

Just a quick update on "The Lump". I think this thing is taking on a life of it's own. Not because it is getting any bigger (Yeah!), but because my thoughts revolve around it.

Anyway, I talked with the Cardiothoracic Nurse Practitioner this morning (who consulted the Infectious Disease doctor) and she said that his WBC was 14 but didn't have any bands (the immature WBC's that you see when the mature ones are used up from fighting infection) and that his CRP went up to 14.7, up from 8 at discharge (it should be less than 1).

The plan at this moment, since he is not having any fevers, is to have home health come and draw more labs Monday morning. Once the surgeons are available in the afternoon and they have the lab results from that morning available, we will go up to PCMC to have them look at it. We will still go on Wednesday as well for his clinic visit with the Cardiologist.

Until then, Ethan is acting "normal". I've also put a pressure dressing on his lump (recommended by the Nurse Practitioner) to try and reduce the swelling and disperse the pressure. It doesn't seem to bother him with it on. Hopefully it will help.

---Allison

Just Waiting

These 3 pictures were taken this morning. I still think that it is getting bigger (even from yesterday). He still hasn't got a raging fever but has been flirting with one all day (high 99's to the highest being 100.4). The lump is definitely hurting him. He doesn't even like me taking pictures of it. Also, when he is laying down he will just whine and say "Ow" and pull the blanket up to his neck.

We took him to the Pediatrician's office and they wanted home health to come and draw some labs (a CBC and a CRP). The nurse just left and we should know if it is infection or just fluid by the results. Now, with that being said, the doctor won't call us until the morning, but at least I will have a small idea of what we are dealing with tonight.

The overall impression that I get from the doctor's is that they are not too concerned with it unless he starts running a fever again (since he is already on such a heavy duty antibiotic). But honestly, even if it is "just" fluid, eventually you would have to drain it if it keeps getting bigger, right?

This is all starting to get to me. I am trying my best to roll with the punches, but my reserves are pretty low at the moment. I know that many families have endured worse (and for much longer time periods) but this yo-yo is getting me down.

On a lighter note. Ethan was kind of grumpy this morning (come on now, can you really blame him? Look at that thing!). Anyway, Ethan was lying in bed watching a show and as soon as Gavin walked into the room, Ethan's face LIT up and he wanted Gavin to lay next to him in bed. Once they got settled in, Ethan reached out his hand for Gavin to hold while they watched t.v.. It really was the sweetest thing and truly warmed my heart. They really missed each other during the last 2 weeks. They are such good brothers.

---Allison