Back home...for now

Thank you, mommy & daddy for keeping me safe at CHOC

Well, we're home, and we're EXHAUSTED. 5 days in CHOC for a fever and infection, and we got out without any collateral damage! Those of you that remember the tape on the face incident last trip understand. Bella's back to her old self pretty much, and managed to pretty much not lose any weight despite not eating for several days on end. We think she just needed time for her esophagus to heal. She is still not back to the mega-meal eating schedule we had her on, but we're close.

No time to rest, though. We are ramping up for a week's stay at Rady's Children's Hospital in San Diego starting Monday for the insertion of a feeding tube into Bella's abdomen. She had her 4 month check up this morning and the covering physician was incredulous at how big Bella was despite her diagnosis. She was a little baffled that we were even putting in a G-tube. She just looked down and saw this big, healthy baby (50th % - weight, 75th % height, 90th % head circumference), but she didn't see the shrinking esophagus, or the hours a day it takes to feed Bella. It's all good. I straightened her out. j/k.

Mommy and daddy are beat, though. It was so tiring being "on guard" for so many hours in a row. Ang and I vowed not to leave Bella alone once while we were there and while it paid off, we paid the price, physically, and especially mentally. It takes a consistent active effort to stay so sharp and on the lookout. Thankfully, the staff at CHOC were extremely gracious and did pretty much everything we asked (politely demanded) of them.

Can't say the same for U.S. Airways. I spent over an hour fighting with boneheads at U.S. Airways to get my mom's ticket moved from this Saturday to next without having to pay the $150 change fee. Apathy at its worst. When I called Southwest to change my flight on Friday, the FIRST THING the CSR said to me was, "Oh I'm so sorry to hear that. Let's get you home to your baby." Then, she put me on a new flight and retrobooked the ticket 14 days prior so I wouldn't get killed. Total out of pocket cost to change on Southwest over the phone?

$7.00

U.S. Airways decided to lecture my mother about "when you hit "I agree" online, you are saying that you are going to follow the rules...." When I took the phone from my mom and the CSR repeated that line to me, I was beyond stunned. Her dupervisor was on the phone in about 30 secondsd after that one, but he was as limp a needle as she was. Then, when I asked for his supervisor, he said, "My supervisor, Keith Dunn, doesn't take calls." I escalated up one level and was at the top of teh food chain at U.S. Airways. SOLID.

I PROMISED Javier (the wet noodle) that I would blog about this poor customer service, so here I am making good on my promise! Time to move on.






Oh, bottom line...they tried to hit my mom for $275 to rebook...got her on a new flight with the help of the travel company she booked with for $25.00. It took over and hour and 5 people, but we got it. Now mom will be able to travel with us to San Diego to hang out and entertain Ali while we protect Bella.

We are looking into staying at the new Ronald MacDonald House there. I volunteered there as a music therapy intern last summer, and since then, they built a GIGANTIC new facility. I'm hoping for some good karma in that we can all stay there as a family for the week without a hassle. The old house was only 12 beds, so there was a huge waiting list, but this new house has 47 beds, so hopefully they can accommodate us with such short notice.

We head down there Monday, and hope to be home on Friday. Recording Bella's record has had to come to a halt, so has our trip to Minnesota. We're supposed to come home Friday and fly out to Minneapolis on Tues. I don't know about you, but 3 hospitals in 3 different cities in 3 weeks is a bit much, even for us wunderkind! LOL.

Speaking of which...I need a nap...bad. Talk to you all soon. Thank you for your love, prayers, and support!

The Return to CHOC

I am an Oompa Loompa!...Don’t worry, that weird growth is my IV line

I’ve said it before…what a difference a day makes.

Every day in the hospital is a learning experience for everyone involved, IF they are willing to learn. Some people come to work and think they know everything they need to know and essentially ‘turn off’ their brains and run on autopilot.

How many of you have seen this?

How many of you do this?

Some people come to the hospital thinking they have no say, or no knowledge of how to actually partner with the treatment team taking care of them or their loved ones.

How many of you do this?

Point is, it’s rather easy to shut off the Creator Brain and just operate on Reactor Brain Mode. I’ve been in both situations myself, so I can speak from first hand experience! I’ve been that guy who just shows up and does his job while thinking about something completely different. I’ve been that guy who just follows along, not wanting to make waves.

Thankfully, my beautiful daughter Bella has yet again reinforced my ability to shift from Reactor mode to Creator mode.

Here’s the latest…

For the past couple of weeks, Bella has really developed a hearty aversion to the special Haberman Feeder bottle we’ve been using. We have had to resort to getting her to fall asleep to sneak a bottle in to feed her. She absolutely REFUSES to drink a bottle while awake. It was quite the process: First, we swaddle her, then slip in the binky (clinical term for pacifier), then wait for her to fall asleep. Then, just as she slips into snooze-land, we slip out the bink and slide in the bottle in one smooth motion. Then, she drinks until she realizes what’s going on and gets pissed, or falls asleep totally and stops sucking altogether. It takes usually 30-60 minutes per bottle. However, if Bella happens to be wide awake (some nerve), she might not want to fall asleep, so we sit and fight and cradle and try and before you know it, 90 minutes has gone by, and the bottle has gone bad. So, it’s pretty regular for her not to get in 6 bottles a day this way. In an effort to keep her daily caloric intake up, we fortify those bottles with extra formula, and it seems to keep her weight up. Last week, she landed in the 50th percentile for weight at her Dermatologist check-up.

Her GI Doc is concerned she is developing strictures in her esophagus as a result of recurring blisters. We guessed she was getting blisters in her throat because she tolerates a binky but screams when she swallows. (I don’t know how much I’m repeating myself from my last post…long hours in the hospital and little sleep will do that to ya.) So, she got an esophagram on Wednesday. That’s also called a barium swallow. Bella got strapped onto a board, and they took X-rays of her while she drank a special cocktail that could be seen by the x-ray machine as it passed through her GI tract.

Results came in today that they discovered a stricture at C5, the fifth cervical vertebrae. Dr. Grant, our GI Doc, will be in tomorrow to discuss what our options are.

Meanwhile, there’s this little thing called … fever.

Thursday, Ang noticed Bella’s temperature going up. It spiked Thursday at 103.2. She called the Doctor’s office, and they told her to give her Tylenol and come in the next day. Friday morning, Ang took Bella to the Doctor and they told her to take her to the ER. By 4:30, the Hospital said they needed to admit Bella. They wanted to get fluids into her and get her temperature under control.

Oh brother, here we go again. Time to ward off well-meaning but untrained staff from harming Bella. I mean that in the nicest way possible. It’s just that with EB, many best-practices are actually contraindicated. Ang had to ward off the ER staff for 7 hours before getting up to the unit. In all fairness, the the staff was incredibly accommodating and open to Ang telling them what to do.

From there, it was a matter of professionally and firmly informing almost every staff member from Doctors to Phlebotomists to Nurses about what they can and can’t do to and with Bella. We only had one stand-off with a resident whose comment was, “I read about [EB] in one of our textbooks.”



Who's the bigger cuddler?

So. Here we are. Back at CHOC. At least we’re not in the NICU again. We have a nice big room to ourselves with a pullout chair that Ang and I actually slept together on Friday night. We have a TV with VCR and a library of Disney movies in the play room just down the hall. We saw Beauty and the Beast (FINALLY), Fox and the Hound (not much of an upper after the first 20 minutes), Lady and the Tramp (awesome), Toy Story (good story trumps good animation, Dreamworks…learn a thing or two from Pixar about storytelling!) Hey, there’s not much to do while your standing guard 24 hours a day.

Bella’s temp is back to normal and we are experimenting with a new bottle today. So far, she’s digging it, however, she can only tolerate 2 ounces at a time before wearing out, so slow and steady gets us back home. We are hoping to get outta here by end of the day tomorrow or Tuesday at the latest.

The bigger picture is when are we going to put the feeding tube in. We’re thinking about just combining it into this trip since we’re already here, but we’ll all have a better picture after we meet with Dr. Grant tomorrow to discuss our options. We were hoping we could go through the clinical trial before having to get the G-Tube put in, but if it eases her suffering and ours along the way, that’s a good thing.

Providence stories of the day (yes, there are more than one):

First, who was the ER Doc that treated Bella? Our NICU Fellow Dr. Green. Boy, THAT saved a lot of explaining.

Second, Ang and mom were a little late getting to the hospital this morning, and were a little worried I’d be mad since they had my morning Starbucks (I spent the night last night so Ang could go home and get some rest). As they were walking in to the hospital, Ang spotted our favorite nurse from the NICU, Tanya, walking through the lobby as well. They caught up a little and Tanya explained that she has received a scholarship from CHOC to do a review of literature to create a reference of best practices for patients with EB for CHOC! She has been a nurse less than 2 years, and has already had 3 EB babies, and is passionate about educating her peers so that future EB babies have it easier at CHOC. GO TANYA!

Second, Bella’s I.V. in her head pulled out this morning so we had to put another one in. The second one lasted maybe an hour. The nurse who put it in was on the night shift, so by the time we could get the nurses to put in a third, she had been long gone. So, in walks our newest HERO at CHOC, Cynthia Smith. She has been a nurse for 36 years, and yet was as upbeat and fun as any new graduate we’ve met. She had experience with EB kids and had a clear plan about how to get this done right. We spent over 2 hours getting that puppy back in. It took two tries at 2 locations on her head, but at the end of the procedure, we got a custom-made, cap with chin-strap made to house her I.V. juuuuuuust right.

By the way, Cynthia was in on her day off, and happened to answer a phone she was sitting next to. The caller was our nurse looking for any nurse who could start an I.V. in the scalp. She didn’t even know Cynthia. Cynthia just “happened to answer the phone,” as she explained.

Third, as I moved into the Family Room on the 5th floor of the hospital to write this, I noticed a saying on the wall to the right of where I sat to write. Sound familiar?



It’s the first three words of the chorus to Bella’s Song…just out of order…Live. Love. Laugh. Life is a game to play so that everyone wins.

Remember, God’s in the details…in the little things. It doesn’t have to be clouds parting, choirs of angels singing moments to recognize God at work. It’s just the little paper cups of water along the marathon route that keep the runner going.

Thanks God for the two cups of water today!

P.S. I will be doing a better job posting at least weekly, maybe bi-weekly going forward. We’ve missed you guys!

Love,

Tim and Ang

The Roller Coaster Continues

Me, Sean Stephenson, and his dad Gregg Stephenson

Well, up and down. This is the way with EB.

Up:

Getting to meet Sean and his dad, Gregg, this week at my good friend Joe Polish's annual conference. I asked Gregg if I could interview him and his wife for The 5 Percent Collective and described my vision. While describing my vision, Sean says, "You could build a MOVEMENT around that." My vision? To empower parents with children with special needs with the qualities that those 5% of married couples who don't split up have and use to stay together and raise successful children.

I want to create a monthly tele-seminar to interview those parents, but I want to create a retreat where families come and meet other families whose children have DIFFERENT special needs and diagnoses so they can see that while their diagnosis may be different, but the journey is NOT.

Left leg is (knock on wood) looking great!

Down:

I am in Phoenix while Bella has a fever that has spiked last night at 103.2 and today at 102. Mommy is bringing her to the doctor this morning while I sit in Phoenix. NO fun being so far away.

Bella is getting blisters on her neck, back, torso, and places where she hasn't had them yet.

Pray for Bella.

Love,

TIm

Well, sorry it's been a while since posting! I've been at a loss for how to keep you all updated without you having to come to the blog to check, and I've been a little laid up since my accident. NO worries, though. Just wanted to reach out and touch base again. You see, today, I finished "Bella's Blessings: a Humble Story of Providence." Today's task was to finish importing all of YOUR comments. I was really inspired all over again by your generous love. After all, there were over 500 COMMENTS on that page in just 3 months. You guys are AWESOME!

Now, what news to bring to you...

Well, Ang went back to work yesterday. She is happy to get back into a routine again. She was couped up in the condo all summer during the hottest months in SoCal, and since heat and humidity exacerbate Bella's condition, it was tough to get out. I'm back in the home for a month taking care of Bella. No worries, I had a blast with Ali for a month when Ang went back to work the first time, so I'm into it.

Bella's feeding issue is as follows. She will NOT take a bottle awake. We have to give her a pacifier and let her fall "almost" asleep...then slip the pacifier out and slip the bottle in without waking her. However, make sure that bottom lip doesn't get sucked in...when Bella pulls that bottom lip in when she's sleeping, you can forget getting a bottle in there! We are fortifying her bottles with extra formula; still using chlorophyl and Alkaline water (pH 9.5), and still using the culturelle and Zantac 2x a day. Despite her bottle aversion, Bella seems to still be growing every week, so we're blessed.

Regarding Minnesota, we are GO for consult in October, but STOP for anything else. Our insurance doesn't cover clinical trials. We are appealing, but it may be a mute point because Ang's company most likely is changing providers during open enrollment in October. U of M said that the new insurance provider usually works well with them, so keep your fingers crossed that the new plan covers clinical trials!

The best part about reading old posts was that I came across my vision for Bella. "One day, Bella will look back and say, "yeah, when I was born I had this rare skin condition, but when they brought me home from the hospital, it went away."

It dawned on me, that when we go through this trial, and Ali's cells start to completely heal Bella, we'll come home from U of M Hospital, and her condition will go away. When I made that bold statement, I never thought past CHOC, but GOD thinks a lot further ahead! Furthermore, she really will be young enough to where she'll have to read her own book to learn about this whole journey. Our hope and dream and vision and PRAYER is that one day, Bella will just have to take our word for it that life was anything other than typical.

Good to talk to you again. Please comment and tell us you're still here!

We love you, God bless you all.

Pack your bags...anyone have a PARKA?

Well, we're going to Minnesota, folks!

We have a consult with Dr. John Wagner at the University of Minnesota Blood & Marrow Transplant Center on Wednesday, October 15 at 9am (if you're going to be in the twin cities that day - or the night before - let us know! Let's share a meal!).

Things are moving along with the registration, paperwork, gathering of information. We are "in the funnel" as Tim at U of M, who is coordinating our care, put it. He expects that this whole process, including the bone marrow transfer and recovery, will happen within the year. That means, by this time next year, Bella could be potentially free from the clutches of EB.

She'll only be a year old.

I don't remember anything (consciously) from that age, do you?

You guys, let that sink in for a second.

She could grow up having NO MEMORY of this.

No memory of pain.

No memory of suffering.

THAT is an inspiring vision to hold on to.

There is a patient who is BMT +6 (6 days post transplant) right now and her mom is keeping us all updated through facebook. We are praying HARD for her daughter right now. I will ask if I can share her name with you all, but in the mean time...know that a girl is fighting for her life right now and needs EVERY ounce of energy, thought, intention, prayer sent her way TONIGHT. The good news is that there is an UNLIMITED amount of love and abundance available for all of us to channel wherever we choose! So SEND IT TO MINNESOTA RIGHT NOW, whatever time it is you are reading this, just take 10 SECONDS and pause, concentrate, focus on U of M BMT patient. Send light, love, laughter, healing, strength, peace, patience, persistence, FAITH, support, BELIEF, and trust...or any other you feel called to!

Also. I am planting the seed now. Remember PUCK. It is a non-profit being formed to raise $$ for U of M's program. Right now, even with all the various EB non-profits out there, NOT ONE OF THEM is financially supporting Dr. Wagner's trial. I refuse to get into any of the politics of non-profits and competing research teams at competing universities. I will just say that Dr. Wagner's program is on the verge of a massive breakthrough for EB and no one within the community is stepping up to help.

Weird. So, PUCK is being formed by an EB family that has moved to MN to help him out.

Lastly, www.the5percentcollective.blogspot.com is up! If you are parents of a child with special needs, or know of one, please go to the site or send your friends or family to the site so we can begin to build a support group that is based on power, optimism, and a desire to be cause in the matter, despite the circumstances.

In other news, we are moving to a mostly formula diet now and will be introducing rice cereal soon. Bella is really struggling with her bottles. We don't know what it is, but she just fights and screams through either the first few minutes, or 30 minutes, then passes out and it takes another 30 minutes to manually squeeze the bottle in one squirt at a time. Average bottle takes an hour to give to her right now. :(

Good news is that we've been using alkaline water for over a week now (pH of 9.5) and her skin looks GREAT. Virtually no open wounds on the outside of her body right now. Just some little stuff on the face, and existing wounds continue to heal wonderfully. Now if we can just get her eating without suffering...

Now, enjoy some wonderfully ridiculous adventures in the girls' room from earlier in the evening...



Cheers!

Tim