July 19: Day +17

Hi folks,

It's been quite a day. There's a lot to share. I got to rounds this morning not knowing what time surgery or dialysis was scheduled for, and I knew I needed to squeeze in bandage changes amidst the other two items on the docket, so it was go time from the moment I walked in the door. In rounds, it was discovered that Bella was not on the surgery schedule, or the on-call schedule. Not a good start. Second, the docs still weren't 100 percent sure if they wanted a PICC line or another Hickman placed. We'll get back to that. The docs still feel Bella has moved past the V.O.D. danger zone, and in private conversations with both Dr. Tolar and Dr. Wagner, the consensus is that she presently does NOT have V.O.D. Yay for that! Other good news is that they pulled about a full liter of fluid off Bella yesterday. She was still up +261 from the day before, but this is way better than +700 or 800 like the end of last week and the weekend.

The only other thing to tell you about regarding numbers is that because Bella sis so well with her ANC and WBC last week and over the weekend, they discontinued G-CSF yesterday. G-CSF is that "fertilizer" that helps the stem cells grow in. What typically happens when you d/c it is that numbers fall temporarily, as they did this morning.

WBC= 7.5 (down 2.3)

ANC= 5.2 (down 2)

My log book where I keep "the numbers"...

It reminds me of this show on NPR I used to listen to when I was commuting a long distance to work... the host of the show would talk about the stock market for the day, and he'd start by saying, "but first, here are the numbers..." then he would rattle off a bunch of indexes. I feel like that guy with Bella's daily numbers report!

Hence, this drop is to be expected and no cause for alarm.

The spot where I read your comments and pray from each morning...

After rounds, I got to work on dressing changes right away, because once dialysis came, I'd have to back off till they were done, and I knew they were planning to go for 5-6 hours today. Somehow in my head I thought we'd get to everything today, and that I'd still have time to get to the reception this evening. The word was the dialysis was scheduled for 11 am, so I had roughly 2.5 hours to do as much as I could. Now, up to this point, I had taken my time doing bandages in the hospital because, really, where else did I have to be, and what else did I have to do? I figured that whatever I didn't finish I'd have to come back to do after dinner.

Well, dialysis was running late while I was running! Good combination to get done ahead of schedule. I was quite happy to get it done and not have any loose ends left over. Bella's skin looks overall unchanged. She wounds are still healing slowly but steadily. I'm not going to make any more comments about her skin lest I jinx myself and her. Seriously!

After I finished, my mom came up to have lunch with me and before I left for lunch, I had a good talk with the BMT doc and fellow. As I left for lunch, we had decided on a PICC line, and the only question was whether we were going to get a double or triple lumen. However, there had already been a 4-way conversation going on all morning about this surgery.

Team 1= ICU docs

Team 2= Renal docs

Team 3= BMT docs

Team 4= surgery team

Remember the phrase, "too many chefs spoil the pot?" Man, was today a case of that!

All four teams have their own priorities and as such campaign for what is in their best interest. What about Bella's best interest? Their problem was that with whatever decision we made today, there were Pros and Cons, so depending on who you talked to, you got a different response for how we should proceed. As the ICU resident so aptly said, "They each have different thresholds." What I witnessed this morning was that no one was taking the lead on Bella's behalf and making a final decision. So, after our consultation, I thought we were clear on a course of action.

Mom took me to lunch, and when I return [what happens when I leave?], I find out that there will be NO NEW LINE placed AT ALL.

???

Can you spot the sink? This sums up my day...

It gets better, the nurse on board today tells the docs while I'm at lunch that since Bella is an EB patient, she can't have even a peripheral IV placed. Those are the IV's that were successfully used on Bella at both CHOC and Rady Children's last year. Did she bother to ASK ME FIRST? No. She got yelled at. I didn't speak to her again the rest of the shift I was so mad at her. I hate people who speak for you as if they know what they speak of.

Anyhow, I go pull the ICU resident aside and quietly lay into him. What happened while I was at lunch?

Why does this stuff happen whenever I leave during the day for any reason??? I have decided that I am a Sentry and Bella is my post. From now on, I am on guard on site on point from 8am-7pm mon-fri. Why? This is when all the brilliant doctors are on hand to make a mess of things.

Anyhow, when I return from lunch, I walk into the room and Bella's blood pressure is in the 50's over 20's, they've got her on dopamine to "wake up her blood pressure" and it's almost at its maximum dosage, and the dialysis nurse is complaining that the lines are clogging up. This is the perfect storm of dialysis problems and exactly why we were adding a new med line so this wouldn't happen. So....... why is it happening?

Turns out, surgery didn't want to put a hickman in, and somehow, everyone got stuck on the need for a hickman. Who cares about a hickman? We just decided on a PICC before I left! What happened was that all the teams met together while I was at lunch. In rounds, at least we get BMT and ICU together at once, but we don't have Renal or surgery. So, the brain trust all let one person run the show and change everyone else's mind.

Again, I feel like I am taking crazy pills. I leave instructions, I leave for lunch, I return to a mess. Folks, this is not the first time this has happened, but now it's the docs tripping over themselves.

The problem was there was an absence of leadership in Bella's care. Since Dr.s Wagner and Tolar are currently not on the unit, there is no one saying, "THIS IS MY KID AND I WANT X DONE." Oh, uh, besides me.

I emailed Dr. Wagner this afternoon and told him exactly that.

After a little while longer, as I am venting to Ang over the phone at the end of the hallway, into the unit strides Dr. Tolar and none other than Dr. McGrath from London! I make a BEE LINE for them, and Dr. Tolar steps up to a phone at the nurse's station to answer a phone call and Dr. McGrath waits in the wings.

I pounce.

I looked him up the night before so I recognized him immediately. I calmly and confidently walked up to him and introduced myself. He recognized my name immediately and we began to chat, and I almost immediately got down to the important stuff... what professional football club did he follow in the English Premier League. Turns out he's a Chelsea Boy (ugh). So, I congratulate him on winning the Double (two of the three cups in domestic and continental competition) and we start gabbing over summer transfers as Dr. Tolar walks up. Dr. Tolar and I start cracking up because I'm not in Dr. McGrath's presence for two minutes and I'm knee deep in soccer conversation with him. I had told Dr. Tolar the day I met him in the O.R. that "whenever I hear and accent, I get hopeful," when regarding engaging in talk of the sport I love so much. Usually, when I encounter a European accent, I have good confidence we can jump right in and start the banter!

Anyhow, I digress, within seconds, I lay out the situation to Dr. Tolar. He springs into action. Surgery happens to walk up behind me right at this moment and I lay into my buddy John who is the surgical coordinator. He and his accomplice start to apologize to Dr. Tolar and myself, not realizing Dr. Tolar isn't even on. Dr. Tolar tells them very politely that he is not on and that they need to call Dr. Verneris immediately and talk to him. They scurry away, and I can only imagine that they told Verneris that Tolar told them he wanted the PICC in, and that was that.

We were in the O.R. within an hour.

I HATE name-dropping to get things done, but I am afraid I am left with no other choice than to start dropping the names TOLAR and WAGNER on people like their my henchmen. What do you have to do around here to get someone to take the lead and TAKE A STAND???

It gets better.

I go to surgery and am told to wait in the lounge to which I tell the docs I am to be involved in the procedure so they might as well just tell me where to get a bunny suit so I can follow them into the O.R. they just grumble and point and then try to leave me behind. Jackasses. I catch up. I KNEW I needed to be in the O.R... not just from my gut, but because the surgeon herself asked me to be. I name dropped her name and told them she wants me there so take it up with her. Turned out I was needed at every step of the way for this PICC line placement. By the end of the operation I was standing next to the surgeon dressing the new line, all four of our hands on Bella getting it done. Oh, and the guy who gave me the most grief about coming? NOT EVEN IN THE ROOM... just helping transport. Nice. Thanks for weighing in on something you know nothing about.

I tell you. I am on FULL ALERT from here on out. I don't need to make a single friend around here. I need to go back to California in October with my little Bella in one piece, and I am now fully committed and invested in pissing off everyone from here to there in the process to make it so.

I get back to her room, thinking I've won the battle right? continuous dialysis at last, right?

WRONG.

"We're gonna giver her a rest and start in the morning. In the mean time, we'd like to try this diuretic on her (that we've used for a week without any effect whatsoever but we want to make ourselves feel better so we'll prescribe it anyway)."

At 7:15 pm on Monday, July 19th, 2010, I yelled so loud at the resident I almost made her cry.

Turns out the line is clogged anyway and needs an all night bout with TPA to clear it up, so we were screwed before we even left for the O.R. So, Grace, the amazingly awesome dialysis nurse promised she'd come in early in the morning and start prepping at 7 am. I told her I would be in at 8am and if she was not well on her way to starting (it can take up to an hour of prep time), or if there was any bullshit from the docs (that part I directed straight at the resident), it would be UGLY. I proclaimed that tomorrow morning at 8am is RECKONING DAY.

Folks, sometimes you just gotta get ugly and FIGHT for what you care about. I am not a fighter by nature, and am a pacifist in matters of war, but you gotta stand up for your rights, the rights of those you love, and the rights of those too weak to stand up for themselves. Why? Because no one is ever going to ask you what your boundaries are so that they avoid stepping on them, and no one is going to profess that your agenda is more important than theirs. Make no mistake, everyone has their own agenda. What are you willing to do to protect yours?

I honestly did not expect such a fight here in Minnesota. I thought, "They get it here."

Wishful thinking. Wishful thinking.

Meanwhile, Bella's head is so full of liquid that it is growing over her headgear. her head just sags on all sides. It is no longer round at all. Neither is her torso. It has expanded so that the sides of her torso just sag outward all the way to the bed.

Oh, on top of all this, I get Dr. Tolar and McGrath in the room to take a quick look at Bella, and McGrath takes one look at her armpit and says she has candida (yeast infection). The best part? She has it under her chin, in her right armpit, even on her forehead. How? All I can say is that these areas have been caked with aquaphor by the staff so incessantly that they have been wet for days, weeks now, despite cleaning them every other day.

Fabulous socks of the day...

I got to the hospital at 8 am and left at 8:30 pm and just felt DEFEATED. Defeated by groupthink at its worst. Defeated by people not confident enough to make a decision and STICK TO IT. Defeated by things I don't even know about (this is the first time Bella has had candida... we didn't know that's what it looked like). That's a crummy feeling after fighting all day.

Ang was quick to point out I did the best I could and how could I have known any better, but at the end of the day, Bella lies in a bed... swelling. Tonight, I told Dr. McGrath that I wouldn't be joining him at the dinner, because I needed to remain "at my post." He smiled, nodded, and said, "Sounds like you need to crack a few skulls together around here," and made the gesture of taking two heads and banging them together.

The guy is on the unit for 10 minutes and he gets the whole scene. Thank you Dr. McGrath.

Rest assured, the cracking will continue in the morning.

But first, I give you Ali...