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

Give Me Your Opinion

Does his "lump" of infection look like it's getting worse to you? Ya, me too.

I've sent these pictures to the cardiothoracic nurse practitioner and she will show them to Dr. Kaza in the morning. He's already on the antibiotic that is supposed to treat his infection. I guess we'll have to wait and see what the doctor says in the morning. I'll keep you updated.

---Allison

The Last Few Days in Pictures

He looked so relaxed when he was taking this nap. He must have been having some good dreams about somewhere other than the hospital.

Ethan enjoys listening to music, so we brought this one to the hospital for him to listen to some of his favorite songs.

Ethan eating his dinner in his new SpongeBob jammies last night.

These next few pictures were taken right before coming home. He has lost around 3-4 pounds (depending on how many diuretics he is on and if he has a wet diaper or not). He looks SO skinny and gaunt to me. We need to get him to gain some weight again.

This is Ethan getting his first dose of Vancomycin at home. I love these cool little bulbs that just give the medication all by themselves. I've seen them before but have never actually used them. Way cool.

---Allison

We Are Home!

We arrived home just about 45 minutes ago. The home health nurse is on her way to bring Ethan's antibiotics and PICC line dressing supplies. Ethan is SO happy! He has been all smiles and very animated since we talked to him about going home today. I didn't mention it earlier to him just in case it didn't happen. Anyway, he is very good with dragging his oxygen tubing around the house and becomes very distressed when it gets pulled off of his face. He is talking more than I've heard in the last 2 weeks.

On similar news, med time is MUCH easier since we switched him to pills. Yes, that's right, pills. I noticed that he wouldn't chew his chewable Tylenol and would just swallow them whole. So we switched his other medications to pills and he does FANTASTIC! We had to pay for all new prescriptions, but oh well. It will be SO much easier on all of us at med time.

Also, prior to discharge today, they had to move Ethan's PICC line out 2 centimeters. To do this they had to take off the sterile dressing, take out the stitches holding it in place, re-stitch it where they wanted it, and then clean and re-dress it. Ethan SCREAMED during this procedure. They had the music therapy people come as a comfort and as a distraction, and although they helped, it was still a traumatizing procedure. They also told me that they would use Lidocaine to numb the area before they stitched it, but if any of you have ever had that, it BURNS (and this is on the inside part of his upper arm, OUCH). My poor guy. We thought we were done will all of the ouchie stuff. Needless to say, he is happy to be home!

We have to go back in one week for lab work, EKG, another chest x-ray, and to see the Cardiologist. Hopefully everything will look good between now and then.

Thank you for all of your prayers. I am exhausted and hope to get a peaceful night's sleep (in between his middle of the night Vancomycin dose).

At least we are home. Sigh.

---Allison

Echo Results

The Echo looks good. Yeah!

We also had another "infectious disease" doctor come in to talk. She doesn't think that the infection is in Ethan's sternum, but wants to draw more labs in the morning and to keep a close eye on it just in case (the reason being that if it is in fact in the bone, the infection will come back once the antibiotics are stopped). If his CRP and ESR labs are elevated, they may choose to lengthen his antibiotic therapy past the 14 days (but as of now, 14 days is the general consensus). So, again, I am not too worried about a bone infection, but I am glad that they are taking his infection seriously. Also, after talking with Dr. Kaza tonight, he said that we are still "looking" at discharge tomorrow but even tonight wouldn't give me any promises. I guess everything is riding on Ethan's morning labs. We'll just have to wait and see.

---Allison

Tuesday, November 17, 2009

As you can see, I've stopped trying to get creative with my titles. In fact, writing the date seems to help keep me on track (because things are beginning to all run together).

So, we still haven't gone for the echo. They had a hard time fitting us in somewhere but they have found us a slot at 12:30 this afternoon. In the meantime, Ethan is taking a nap and I figured I would just give a quick update.

As far as I can tell we will still be coming home tomorrow. Although we just had a consult with an "Infectious Disease" doctor to see if they felt he may have osteomyelitis (a bone infection, in this case, his sternum). I don't think they feel that this is the case but are simply ruling it out to cover all their bases. I sure hope he doesn't have a bone infection because the treatment is 6 weeks of in hospital antibiotics. Yikes! Don't panic, although the lump is still there he hasn't had anymore fevers and seems to be feeling better. I think that it is just a soft tissue infection.

Speaking of his infection, they got the culture and sensitivity back yesterday and it turns out that the only thing that they changed was that they discontinued the Zosyn. The staph he has is only resistant to Vancomycin (the other one that he was already on) and one other antibiotic (I forgot the name). I was told that they always use the Vancomycin first and do the other one only if the Vanco doesn't work. I was hoping that he could get off of the Vanco because it can be toxic to the kidneys, but they've checked his blood levels and so hopefully his kidney's won't take too hard of a hit. Anyway, I believe that today is day #5 of his current 14 day antibiotic therapy. We're only a couple of days away from being half way there. Not too bad.

I will update again after his Echo and with any more information. Please continue to keep Ethan in your prayers. Although he is improving he could still use them. Thanks!

---Allison

Monday, November 16, 2009

Ethan and I had a rough night's sleep last night. He was having bad dreams about the hospital and talking in his sleep about it. He was very restless and wanted me to constantly hold his arm where his PICC line is. It seemed we were up at least every hour if not more for various meds and vital signs and just to comfort Ethan.

Our morning officially started at 5 am with lab draws (but he didn't have to get poked this time because he now has his PICC line that they can draw blood off of) and then a chest x-ray at 6 am.

After talking with the doctors when they made rounds, Ethan's CRP level is still dropping which is very good. They also got the culture and sensitivity tests back this morning, so now they can switch his antibiotics to be more specific to his infection. His chest x-ray looked good and he will go for a sedated Echo tomorrow morning (not today as originally thought).

The plan, assuming that everything still looks good, is to be discharged on Wednesday. We will still be doing IV medications through his PICC line at home for a couple of weeks. But hey, at least we will be home.

---Allison

Sunday, November 15, 2009

Ethan now has his PICC line in. I was told by Dr. Kaza that his WBC's are normalized but his CRP is still elevated (although coming down). His chest x-ray is looking better and they will start working on getting his IV diuretics oral again. He will still get an Echo on Monday and will need a dietary consult before we can go home. Ethan was skinny before, but after losing a few pounds, he just looks like a stick with a swollen belly.

I also think that he had a small bowel obstruction. He's been having diarrhea for the last two days. Before each bowel movement he would just cry out in pain and say that his "bum hurt". We didn't know why since he doesn't have any skin breakdown and he'd say it before his bowel movement. Well, not to be too gross, but this morning he "gave birth" to a very hard and very large (just a bit bigger than a large egg) bowel movement. Since then, he appears to be much more comfortable.

After talking with his doctor, he is thinking that we may be able to be discharged with home health care mid week. Between now and then, I am hoping that it snows again. Ethan loved watching the snow fall from his window. I also took him for a wagon ride yesterday and we went outside so that the snowflakes could fall on his face. He had the biggest smiles and absolutely loved it.

Well, we hope that Ethan's Echo looks good tomorrow and that we will be coming home soon. I'll post more as I hear more.

---Allison

Today's Happenings

Ethan did really good today. He is only taking Tylenol for pain now and that seems to be enough. He hasn't needed any Morphine since last night. They pulled the pressure dressing off today and although the color is better, Ethan still has the large lump above his incision. The doctor seemed a little disappointed with this and now wants to get more aggressive. I wasn't at the hospital when the doctors made rounds this morning, but I guess the plan now is to place a PICC line. They wanted to do it today, but being the weekend, they didn't have the correct staff in house to get it done. They will try and get it done tomorrow, but if not, they will for sure place one on Monday. From what Tim has said (I haven't talked with anyone myself) they are placing it because his CRP and WBC's are still elevated even though he is on some strong antibiotics. So in light of his labs (and the existing lump), they want to run a course of IV antibiotics for 14 days. Tim said that once he is stable, then we can maybe go home with the PICC line and do his antibiotic therapy from home. I will be at the hospital tomorrow and will hopefully get a little bit more specific answers to what the plan of treatment will be.

Here are a few pictures from today.

Ethan didn't eat much on his lunch tray, but as you can see, he really enjoyed his ice cream sandwich.

My parents came up to see Ethan tonight. My dad brought a couple of books that Ethan likes him to read when they are together. Ethan's face honestly lit up with a huge smile and started kicking his leg when he saw the books. My dad read them both a few times.

Ethan has had about enough of everything at the hospital and that includes my picture taking. He was perfectly content right before this picture was taken, but then he saw the camera and began to fuss. I didn't think that I took THAT many pictures.

This is what he started to do in protest of me taking his picture.

And again, we were going on a wagon ride and he was very happy until the camera AGAIN came out. I guess I should just stop taking pictures, but I can't bring myself to stop.

So, this was my attempt at getting a picture of Ethan and I together. Tim is not a camera person and will never pick it up when he is there. So, I took matters into my own hands and this is the best I could get. I think the only reason I wasn't getting an attitude was because he was eating his Cheetos.

---Allison

The Plan as I Know It

This is Ethan on Tuesday night. He was admitted on Wednesday morning. I love how even though he's not feeling well, he still has attitude. I think that is actually why he does as well as he does. He's a tough kid.

These 2 pictures (above and below) were taken on Wednesday after we were admitted. His fever was pretty high at this point and he was just not feeling well. Plainly stated, he was simply NOT happy to be back in the hospital.

This picture was taken this morning in the PICU. His fever had broken at this point and he was sweating profusely. He literally left a body length's wet spot that went through 2 layers of bedding. I don't know if you can see it well, but even his hair was seriously wet with sweat.

This last picture was just taken tonight in our new room on the surgical floor. He is still not feeling well (he got a fever again late this afternoon), but I believe that he is now on the right track to recovery.

So, the plan as I know it only takes us to Monday. The only reason why I say that is because Dr. Kaza wants to get another Echo on Monday to check Ethan's heart function. I still don't know how long they will want to keep him after that for antibiotic therapy, but Ethan's chest x-ray this morning confirmed that he does NOT have pneumonia. However, it did show that his lungs are getting "wet" with fluid. He is already on 3 different diuretics so they upped the doses, increased the frequency and changed 2 of them to IV so that they wouldn't get spit out. Hopefully this will work and pull off the fluid from his lungs.

Also, they haven't changed his antibiotics yet, so he is still on Vancomycin and Zosyn. As soon as they get a sensitivity to his staph infection they will switch them around to be more specific to the bugs making him sick. I don't think that Ethan will be able to come home until they are sure that both issues (the infection and wet lungs) are resolved. But we at least have until Monday to try and work it out.

Until then, Tim is taking the next 2 night shifts and I will be there during the days (as opposed to me being there 24/7 like the last few days). We are in room 3087 if anyone would like to call. Overall, I think that although tired, we are holding up well. I attribute that to all of the physical, spiritual, and moral support that we've received from all of you. Thank you.

---Allison

The Source

It looks as if they may have found the source of Ethan's infection. Any guesses? It turns out that one of the samples that they sent from the OR of Ethan's hematoma did in fact have some gram + cocci (infection) in it. They are not sure which "bug" is the culprit yet (I would guess staph), but it looks like they will probably take him off of the Vancomycin and change him to a different antibiotic now. They are also running some more blood cultures just to be proactive.

As far as Ethan is doing, he looks to be feeling much better. He didn't have a fever all night and even the profuse sweating is slowing down. He is still painful (but what do you expect?).

I am still not sure of the exact plan or length of stay at this point, but I believe we will still be moved out of the PICU to the floor sometime today. I will update more as I get more information.

Also, I just wanted to let you know what an amazing family I have. They have completely taken care of my kids, have sent gift packages for all of them in the mail (Ethan isn't the only one who has had to make some sacrifices), made meals, sent flowers and treats, brought DVD's and toys for Ethan, and also coordinated a surprise cleaning of my house (by multiple members of my family I found out, and it was GROSS).

I just want all of them (and everyone reading) how much I love and appreciate each and every member of my BIG extended family. You all mean the world to me and have made my heart full with the knowledge of how much I am loved and that I am truly never alone.

Also, I can't sign off without publicly thanking all of my many neighbors and friends for your sweet phone calls, FB and blog comments, meals, rides for my kids, and for the very thoughtful and fun gift bag (thanks again, Diana).

I have the greatest family in the WORLD. I have cherished friends who I love dearly. I have wonderful neighbors who look out for us. And to top it off, I belong to an amazing "heart family" support group. Honestly, I couldn't ask for anything more.

Thank you. All of you. From the bottom of my heart. Thank you.

---Allison

Just a Quick Update

Ethan still has a temp.

The cause is still unknown.

He is doing well (taking in account 2 surgeries in the last 9 days).

---Allison

He Is Out Of Surgery (Again)

For starters, all of Ethan's blood cultures and viral tests (RSV and such) have so far come back negative. The antibiotics appear to be helping, but as of this morning, Ethan is still running a fever. The good news is that he does not have to be in isolation any more and when he is ready, we can move back into the "good rooms".

As far as our morning went, Ethan went into the OR with our surgeon and the anesthesiologist (Dr. Evans) about 7:15 this morning. The surgery took only about an hour, and he is now back in the PICU to recover (we will hopefully be moved to the floor tomorrow).

Although on the surface, this may appear as a "small" surgery to drain the hematoma, this surgery really scared me. This is the first time that Ethan hasn't gone into a surgery "strong". I didn't like that he would have to go under anesthesia again when he is already recovering from last week's surgery and is also battling with some unknown infection (they still haven't ruled out pneumonia). Also, last night Dr. Kaza came to talk with us and told us that depending on where the bleed was, they might have to re-open his chest wall and flush around his heart. This would mean that he would basically be starting over with the chest tubes and recovery time. Needless to say, we feel very blessed that this was not the case this morning.

Dr. Kaza did have to re-open his chest incision but did not have to cut through his chest wall. The large blood clot was sitting on top of his sternum (which I was told was an odd place to have a bleed) but that there was no damage to the sternum itself. He also didn't think that there was any infection in the clot, but sent a sample to be cultured to be on the safe side. They flushed out the area really well and then closed him back up. They have placed a large pressure dressing on top of his chest to try and control the bleeding (they considered putting in a drain, but due to Ethan's combative history coming out of anesthesia, they opted to try the pressure dressing instead). Dr. Kaza said that after seeing the bleeding, that he is not surprised at how much pain Ethan has been in. I'm hoping that he will start feeling better now that this is taken care of and that they can find where the source of the infection is stemming from.

Tim and I have been able to go in the PICU to seem him and he looks pretty good. He is still very groggy but isn't currently too agitated or combative. I suspect that we will be here for a few more days until they can find and treat the infection, or until they've given him enough antibiotics and he remains fever free.

Again, we appreciate all of your thoughts and prayers. This little guy has been through a lot.

---Allison

Re-Admitted

So the long and the short of it is, Ethan's CRP level came back at 25 which is very high and an idication of infection. He hasn't had a temp since the one time Monday night, but while we were waiting for his chest x-ray to be done today, I noticed that he started feeling a little warm again. Sure enough, his temp was 101.5 when they finally took his vitals. He is also breating fast again (anywhere from high 40's to 70's) and his heart rate is back in the 160's again. They thought he might have pneumonia from the look of the x-ray, but our surgeon looked at it and doesn't think it looks too bad. At this point, they don't know what is causing the fever and have started him on some broad spectrum antibiotics. They're also running an H1N1 test as well as blood cultures in an attempt to find the source of the infection.

As far as the hematoma on his chest, the surgeon came in and said that he needs to drain it and try to stop the bleeding since it is getting larger. We will go back into the OR tomorrow morning and hopefully it will just be a local incision, although he said he may have to open his chest again.

I had a small breakdown in the office when they told us we would be re-admitted, but since then, I am keeping it together fairly well. I wasn't surprised (in fact, I'm more surprised that they didn't re-admit us Monday night with his first fever), but I am sure frustrated. It is so hard to see Ethan in pain and sick on top of it. He has had to be poked 5 times just this afternoon and he just panics whenever anyone enters the room.

Please keep Ethan in your prayers. We pray that the infection will be taken care of and that his surgery in the morning will go well.

---Allison

What's Grosser Than Gross?

This is a re-cap of an event that took place last night. Proceed with caution, it's gross.

Seriously, there has to be a "Mommy Award" for this one.

Ethan woke up in pain around 2:00 am. It was time for his Motrin and without much fuss he took his chewable tablet and asked for his "chockie milk". No problem. Well, I guess he cheeked his tablet while drinking. When he was done drinking, I told him just to chew it up and swallow it (which he did), however, he didn't want anything more to drink.

Now, this is where it starts to get bad. Ethan was resting in the crook of my arm and started snuggling into me. About a minute later, without any warning, he vomited all 8 0z of his stomach contents onto my face. I was too far away to tap Tim and therefore had to call out his name to wake him up. (The act of which causing regurgitated Pediasure to seep into my mouth.) I am seriously trying not to throw up myself at this point. It took a minute for Tim to realize what was happening and to get out of bed to turn on the light.

Tim eventually figures it out and took Ethan to get him cleaned up, but honestly Ethan looked good compared to me. It was all over my hair and face, pooling on my chest and dripping down the back of my neck. Although disgusting, I wasn't horrified yet. I calmly went into the bathroom and started to get cleaned up. I washed as much stuff out of my hair as I could and then just put it up in a bun. I changed my clothes and got a warm washcloth to clean my face, chest, neck, and arms.

I got back into bed thinking that I could to go back to sleep when I realize that while laying down, vomited Pediasure had dripped into my nose and was now sitting in my sinuses. As I laid there trying to go back to sleep, this disgusting Pediasure would slowly drain down the back of my throat!! I had to get up several times to spit in the sink (because it was just too yucky to swallow) and this morning I have really cute Pediasure boogers to remind me of the events of last night.

True story.

Sorry, I told you it was gross.

---Allison

A Rough Start

For starters, this post has pictures of Ethan's incision, so if you are squeamish, you may choose not to proceed.

Ethan has been enjoying being home but has had a little bit of a rough start. It started last night with a temperature of 101.9. He already had Motrin on board that I had given him an hour before for pain control. We called PCMC and talked with Bonnie (one of the Cardiothoracic Nurse Practitioners) and she had us given Ethan's Lortab (which has Tylenol in it) early to see if his temp would come down. Luckily it did and he has not had one since. I'm glad that it came down, but it bugs me to not know what was causing it in the first place. Anyway, Annie (another Cardiothoracic Nurse Practitioner) called us back this morning and wants us to come into the clinic tomorrow morning instead of next week to get some blood work done.

I've also been concerned about a pink raised area above his incision that I was told to keep an eye on to make sure that it didn't start oozing or looking like it might be infected. Well, I ended up calling Bonnie again tonight because this "spot" is definitely changing. It is getting larger, darker, and is now hard (where it was soft earlier). It could easily just be a large bruise that is finally showing through (since there are green edges it looks kind of old). However, it seems to be getting bigger and I am afraid that he might have a small bleed underneath. We were told that there was probably nothing that they would do about it, but they would look at it tomorrow in clinic. What do you think?



I took this picture last night around 10:00 pm. It was more pink than it shows here, but you get the idea.


This picture was taken today around 11:00 am. It is starting to have more color to it.

This picture was taken around 5:00 tonight.

And this picture was taken around 7:00 tonight. Although you can tell that it is obviously changing colors, it is hard to tell in these pictures how raised it is. The size looks as if you cut a golf ball in half and then painted it purple. We'll see what they say and/or do about it tomorrow morning.

---Allison

Tears

Tears of relief. Tears of gratitude. Tears of joy. Enough said.

---Allison

We're Coming Home!!

So we are just waiting to get Ethan's prescriptions filled and for his home oxygen to be arranged and then we will be on our way home. We have to come back on Thursday for a chest x-ray and lab work but in the meantime, we get to be home where Ethan should hopefully be more comfortable.

I know that I have said it before, but I can never thank each of you enough for your prayers, thoughts, and well wishes. I know my limits and how quickly I can reach them. I have felt the love and concern for Ethan and I. It truly has made this journey a much easier one. I have also felt the love of my Savior and the peace that only He can bring.

I realize that this recovery is not over and is just going to be taking place in a new environment, but to be a little bit cheesy, there really is no place like HOME!

---Allison

Post Op Day #6

This is Ethan rebelling against his Oxygen. He is also constantly pulling off his sat monitor and knows that he is being naughty when he does it. As frustrating as it is, it's nice to see a little fight come back into his eyes.

I don't know what specifically was upsetting him here, but this was not an uncommon face today.

The whole day wasn't grumpy. He did have fun playing with his new cars and eating his fish crackers.

He wasn't happy about walking or going to the playroom today. I think that his pajamas pretty much sum up what Ethan is feeling at this point of his recovery.

As you can see from the pictures, today has been a day of ups and downs (but mostly downs). I don't think that he is in a lot of pain, however, I do think that he is obviously uncomfortable and has just about had enough of the hospital. He fusses and covers his mouth when anyone walks into his room. He is just in a bad mood! He is also still fighting all of his medicine (which is all oral now). In fact, as I type this, he is sleeping in the bed next to me and talking in his sleep saying "I don't want it medicine, NEVER!", "I don't like it, EVER!". Poor guy. He can't even escape in his dreams.

As far as I know, the plan is that we will be discharged tomorrow. They were actually thinking about sending him home today, but he was still on some IV meds and we decided that it would be better to spend one day here on complete oral meds before going home. He is honestly such a trooper. The last couple of days he has only been on Tylenol and Motrin (or Toradol).

I am excited to get home and get into somewhat of a normal routine again. Although I know that Ethan's recovery won't be complete for a while and will take up a lot of my time since he likes to have someone right there with him literally holding his hand. I now wish I had the house clean prior to his surgery because it has really gotten out of hand since we've been here. Oh well, we'll get to it in time.

So, I hope we get a good night's sleep tonight because it seems like we will have a big day tomorrow. I'll post when we get home.

---Allison