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