Monday, July 19, 2010

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?


"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...


  1. Wow...what a day! Your post made me laugh so hard at times (from the sarcasim) to the opposite extreme of tearing up. Bells is so blessed to have you as her Daddy...I think about her constantly throughout the day...and everytime I tend to get upset or 'ingrateful' for the day, I always put myself in check, which leads me to prayer...and Bells is at the top of my prayer requests! Thank God for Tolar and Wagner...and for Mc Grath...I pray that God pour out his knowledge, grace and mercy onto the Doctors/Nurses/staff....I pray that they work together in a seamless fashion. I commend you for taking a stand! Breaks my heart that these 'brilliant' people can be so selfish. They should all be working in the same direction and for what's best for Bella! Thank you for the update. I will continue to lift Bella and your family up in prayer to the Lord.

    For where two or three come together in MY name, there am I with them...Matthew 18:20

    The LORD here's our prayers!!!

  2. wow....what a day.
    I am exhausted...

    All I can say is that Bella is so lucky to have you.
    And, one day, you will look back...and have no regrets.
    Good for you...I know Bella is giving you a high five in her mind.

    So, as you take your post...what is ONE thing that would make it easier for you? (besides a bed)

  3. WOW!! Todays post got me really fired up. All I can say is Bella is so lucky to have a daddy like you in her corner fighting for her! Way to go. People can be so ignorant sometimes. This is a babys life they are dealing with. Ugh!!! I'm so sorry you have had to deal with that kind of people. You guys deserve better, Bella deserves better. Hopefully they've gotten the picture and step up their game around there.

    However, I am so happy to read how well her numbers are. So sorry her swelling is so bad. I will pray that they are able to get under control and that her kidneys and liver improve. Stay strong and remember we are praying for all of you.

    Take care,

    Amber McLaughlin, CA

  4. You go get them, Dad! Continuing to keep you and Bella and the rest of your family in my prayers. Praying especially for Bella's kidneys to heal.

  5. She couldn't have a better Daddy!

  6. Well.......when you start cracking skulls in the AM just be sure to crack em good and hard....get the point acrossed to the dumb arses right off the bat....stand up for that Baby and make them do the right thing....those idiots are not god and need to get knocked down a peg or two....or four.
    By golly I am a fighter when it comes to my patients and kids....your doing a great job Tim but it indeed sounds as if it needs to go to the next level of fight it out....there is no flight in this case to much is at stake.
    I love your attitude of "I dont need to make a single friend" put your hip waders on and do what you do best....fight for Bella.
    My prayers tonight are not only going to be for Bella as usual but especially for you Tim....may the good lord give you the strength to fight the good battle from here on out and get it done.

  7. I am just so mad! Why are the doctors so condescending with the parents? Why can’t they just accept that we know our children better than anyone else in the world?? That guy from the surgery team… what arrogant! I just would like that for ONE day, they would be in your shoes!

    But, Tim, Ang is so right! You are doing your best and are not defeated at all! All your actions show what a great advocate you are for Bella!

    Yesterday was a tough day… and will not be the last… BUT things will get better! Bella will improve her condition. Her kidneys will recover. Her swelling will disappear. Ali’s cells will continue to grow!
    Take a deep breath, and arm yourself with hope and strength.

    “Even though I walk through the darkest valley
    I will fear no evil, for you are with me;
    Your rod and your staff, they comfort me.”

    Carla and Matilde, from Portugal

  8. Wow, what a day and how great for Bella to have you as a parent. Keep up the good fight! It's a scary thought that they don't seem to have a clue what is the best for Bella sometimes. Take care, best regards Jenny in Sweden, mother to little Natalie with RDEB-HS

  9. Thank you for fighting so hard for Bella. You have a plan and you are working that plan, with and without the help of these other professionals(?).
    Jesus today give Tim the peace that passes all understanding. Help him to see You as he works to keep Bella safe. sg-KS

  10. It's 8:07 EST here right now (Pittsburgh) and I'm reading through this, feeling the heat creep up my neck toward my face. MY GOODNESS! WHY?! Why are they giving you such a hard time? I'm praying today that you do NOT have to get ugly and make anybody cry. (Although, I have to admit I find that part a little funny... I mean, has the resident never been read the riot act before? This is someone's LIFE at stake. What the heck!?)

    If I have all these questions, I can't imagine what you are feeling. Praying for peace for you, for stability, and wonderful staff for today. And for the doctors/nurses/therapists to finally GET it. What a great father you are, truly, this post just screams the love you have for your daughter and it is SO beautiful! Keep up the good work! Every ounce of energy you put in is going to come back to you ten-fold.

    Best Wishes!

  11. Wow Tim you are awesome. Thank God you were there when needed. It's so true, you have to stand firm and don't take any S*** from these know it all doctors (many don't have a clue) and protect your precious daughter. YOU KNOW what is best for her and you will see that it gets done.
    Hang in there, you are doing an awesome, awesome job being Bella's Daddy and also being an advocate for EB care. We are so proud of you. Your EB family is so grateful for all you do for us. A big heartfelt THANK YOU from all of us. Love you guys!!! Love Leah's Nana

  12. Tim:
    Despite the challenges presented by the group think of the hospital, it is clear that your faith, patience and dedication will win the day for Bella. I think of and pray for Bella every day and trust in God that the doctors and nurses caring for Bella are blessed with wisdom and cooperation to coordinate her care. Keep at it! Your advocacy is making a difference.

  13. Dear God,
    Bless this precious baby and her family.
    Bless the doctors, residents nurses and staff - make them all aware of what needs to be done to best help this precious baby heal - give them the understading and ability to decisively act on helping this child and promoting her best interests over theirs.

  14. I found Bella's story a month back through another blog and have been following it almost daily. I wanted to let you know that I pray for her all the time, for a successful transplant and for you to bring her home safe and sound as soon as possible!

  15. Tim, you are a ROCK STAR of EPIC PROPORTIONS! Bella is so lucky to have you as her daddy! Kudos to you for finally deciding to start taking names & kick some @$$! Even if you're Surrounded by people who supposedly "get it", sometimes that still just needs to happen. Ang is right - you're doing everything you can. Just keep praying, keep the faith, and do everything you can. God will take care of the rest.

    By the way - our whole ward is spraying for Bella now! We've been praying as a ward for Daylon pretty much every week since he was born. I emailed everyone about Bella and now she is in the minds & hearts of our church as well. She is loved! Lots of prayers headed her way. God will provide. Just stay strong and don't let the men in white coats drive you crazy! -- Daylon's aunt Jess.

  16. Oh man ... you are doing a great job at keeping your cool enough to get your point across! It must be hard not to literally knock their heads together. I can't believe all that is happening ... it sure seemed like of all places, THIS would be the place where they would be awesome. Where they would know EB, and know the best thing for Bella. Thank goodness she has such an awesome Dad sitting at her side, at his POST, watching out for her!

  17. Those little socks are so sweet!

    Sending prayers and love from Georgia. XO!

  18. I cannot imagine the fight your are all fighting- in more ways than one. Keep the faith and stick to your guns! Praying in NC...

  19. Lynne, Bob, Jack and BenJuly 20, 2010 at 9:21 AM

    Keep fighting and know we're in the ring with you. Also, it struck me that Bella must be aware of your fight for her, and it must give her strength. We're holding the intention that her good cells continue to grow, and that her kidneys heal. We are picturing her running, playing and jumping in your arms.

  20. Jack and Molly's NanaJuly 20, 2010 at 9:22 AM

    After being out of town for a few days, the first thing I did when we arrived home was turn on my computer to check up on all of you. I read the good news and the bad news, but the BEST news is that you have become my hero...seriously. In all my years of working with kids and their parents I've never "met" (hopefully we'll get to actually DO that when you get home) anyone with more dedication and strength. I'm so proud of the way you daily find the wherewithall to take on the powers that be who seemingly block your progress, and can routinely ally yourself with those who have your baby's best interest at heart. Keep it up, and remember to be thankful for the source of your strength.

  21. Keep fighting! Bella is blessed to have you as her advocate and daddy!

  22. I don't even have words for this...I'm just so sorry things are such a mess. I am praying for your strength to be renewed on a second by second basis. Praying the Lord fills you up when you are running on fumes. And, as always, praying for sweet Bella...
    I am in prayer for the hospital staff...asking God for wisdom and compassion. For them to shed thier pride and realize how knowledgeable you and Angie are on EB. For them to SEEK YOU OUT...learn from you.
    Prayers go up for Ali. What a lovely smile...and darling child.
    Not gonna stop praying...don't worry about that.
    KC, MO

  23. I have never read anything more inspiring. You might not be a fighter, Tim, but you are MUCH MUCH MORE: definitely the best father, husband and amazing human being I have ever "seen". Same goes for your beautiful family -- Ang, Ali and Bella. Our prayers are with you. October will be a blessed month.

  24. WOW!!! Our family is praying for you and yours. I know the stress of constantly fighting the people you think should be right. It drives my hubby crazy that I am constantly having to fight for things to go right for our kids. I don't know what to say. I don't know what to say to him when he asks if it is normal. No, I don't think it is normal, but for some of us it becomes the norm. We both tire of it. And, we haven't even had to fight like you are.

    I actually had a nurse tell me that I need to follow my gut instinct and if it was screaming that loud I shouldn't have given up. SHE was the one who I kept saying, there's something wrong to. It was after my daughter's nephrectomy (kidney removal). I can't even tell you how many times I kept saying, 'There's something wrong. I don't know what it is, but something is wrong. Her pain level is too high and she's on morphine." It was an absolutely awful experience and I felt like I read that you feel. Your fight will be long. Our family will lift you up to the Lord that he will give you clear insight on what you are fighting for and he will give you strength to keep up the fight. I will pray that the sleep you are able to get each night is magnified so your body can live on less. I have prayed this prayer for myself so very many times when sleep deprived because of medical issues. It has worked. I prayed that the Lord would make the broken 4 hours of sleep I was getting into feeling like I had gotten 8 hours of uninterrupted sleep. I will pray that for you and your wife.

    Many blessings to you and your family,

  25. Tim & Ang,
    you are doing a super great job taking care of Bella and your family! You always have to be your own advocate with any medical care anywhere. This experience just goes to show that the doctors don't always know what is the best way to proceed, thus all the differing opinions. Unfortunately, there isn't always a "right" way or even a "best" way for dealing with complicated situations, and what worked for one patient, may not work for another. Sad, but true.

    Keep fighting for Bella, you are with her 24/7 and you know everything about her. The doctors only see her a few minutes of the day. How can they possibly "know" her? They just make somewhat educated guesses. I can't tell you how many times I have had to diagnose my own medical condition and tell a doctor what to look for! lol
    Take care of yourself, and continue to trust in yourself. Know that you are a child of God and His love and His care are yours forever.

    God Bless,
    Cyndy from SC