Wednesday, October 28, 2009

The Breeze and the Brook

Check out our little monster!

Sorry for not posting sooner. Guilty as charged. Nice to be back with you.

Well, we're 5/6ths of the way through our 2 week trial with daycare, and it's been a bit of a roller coaster.

Day 1 saw the biggest wound to date appear on Bella's left knee and upper shin. Really, it started on her thigh, went across the entire knee and down the shin. Worse than the bathing incident with the left foot if you remember that one. the upshot is that it is so bad that we now have to treat the left leg in three parts: 1) thigh, knee, foot. The good news is that because the wounds are so big on the knee and foot, they now require their own wrapping and bandaging. Before, we would use one roll of gauze for the entire leg, which meant the whole thing was exposed at once. This made for difficult handling because there was literally no where to hold the leg that wasn't injured. Now, I treat the foot first and wrap it separately. Then, the knee. In this fashion, we can hold on to the shin safely over the previously wrapped part. I hope that made sense. More wounds and stress, but easier to actually treat.

Day 2 saw a big blister in the crook of the neck/left shoulder. Like a collar.

Day 3 was uneventful. YAY!

DAy 4 saw Bella attack her face with her hands and do some serious damage. Poor Joan just couldn't figure out how to stop her from clawing. Bella is now leaving her eyes alone, but is raking her cheeks and ears with her fingertips, causing some nasty open wounds on both sides.

Day 5 (today) we did a half day to minimize the collateral damage. The good news was that we put on Bella's silk mittens over her ABC wrapped hands and this helped minimize further damage. I also taught Joan how to Taquito-wrap Bella (like a swaddle without the feet part) to basically keep her arms and hands immobilized. I showed her how to feed her with the G-Tube and change her this way so if she's sleeping she can remain that way. When I picked her up, things seemed under control.

Day 6 is Friday, then we all collectively decide if we want to go forward. Joan admitted it is very stressful, and that she is glad it is only M-W-F so she has a day off in between each to recover! She said that she thinks she'll get used to it, though. It's really just a non-stop puzzle. Bella presents us with a new problem it seems almost every week or two and we have to solve it as quickly as possible to avoid too much damage.

The gals enjoying some sweets at "The Cupcakery"

I have to admit that this puzzle is really tiring. My brain hurts from being "On guard" 24/7. Right now, I am covering the midnight and 6 am feeds since Ang is back working FT again, and so my brain really never shuts off. Ang and I split up the tween hours; if Bella cries before 2:30, Ang checks on her...after 2:30, I check on her. That's not set in stone, but a guidline to try to give each of us a couple of hours to turn off the internal baby alarm.

Every parent reading this understands the internal baby alarm. What is different between Bella's alarm and, say, Ali's, was that when Ali would cry in the middle of the night, it was usually 2 of the main 3: (hungry, tired, or wet). With Bella, the stakes are raised because if she has busted loose from her swaddle and is flailing while she is crying, she is most likely inflicting a wound on herself. That wound carries the potential of being a portal for infection, and infections can kill EB kids and often does. We've already ended up in the ER and hospital for 5 days last month for a Staph infection. NONE of her wounds at the time showed any signs of infection, so we had no idea, nor did any of the Docs, why or how she got so sick. That left us with a little PTSD because now we are afraid of pretty much every new wound. That sucks. I just didn't realize just how easy it was for her to get an infection, and as I was telling Ang, for better or for worse, I just don't know if I could ever forgive myself if she happened to get an infection and have it be fatal.

Okay. Now, that was all a lot darker than my usual posts, I know. BUT, what I am dealing with now is the reality of this condition. Until now, I have been mostly unafraid of Bella's wounds (That's a lie...I was freaked out during the first couple of weeks doing wound care at home). Right now, I am afraid of her wounds again.

What this is all really pointing to is my need to try to wrestle control of her disease back from God. God being as nice as she is, gave it back to me. Notice how FREAKED OUT I am now that I am thinking her safety and ultimately her life is in MY hands?

This disease is so much bigger than me...there's NO WAY I CAN CONTROL THIS. If I had a chalk board, I'd make myself write that for detention.


Typing this blog is like looking into a mirror. I highly recommend it for everybody and anybody, regardless if anyone else ever reads it. It makes for a good platform to process what's going on inside....some people might even call it "journaling" but since it's online and potentially public, it's called blogging. Whatever. It works!

Check out my son Julian...JUST KIDDING!

PROVIDENCE story of the Day:

Look for God in the whispers and winks of nature, not the shouts and the glares.

What I mean by that is just this...

Today, after a meeting, I walked out of the building and down the steps. At the bottom of the steps ran a brook/water feature; clearly built to create white noise and some serenity. I stopped, and sat down next to it. For the next ten minutes, I did nothing but just be. I allowed the sound of the running water to wash away my pain, exhaustion, stress, worry, and fatigue. It was better than sleep. it reminded me of a quote from one of my favorite characters from The Matrix Trilogy, The Merovigian.

He said, "Who has time? Who has time? But then if we never *take* time, how can we have time?"

Today, I *took* time to be refreshed. How many times a day do YOU *take* time to refresh your Self?

Later, when leaving Joan's with Bella, I opened the minivan to notice a wave of HEAT coming pouring out. I parked in the sun and forgot to crack the windows. Heat and humidity exacerbate EB, so we always try to park in the shade, cover the windshield, and crack all the windows. Well, I forgot to do all of it. I apologized to Bella, left her door open and walked around to the other side of the minivan and opened my door and the driver side sliding door also to get some cross breeze goin'. Problem was, there was NO wind; it was as still as it could be. Oh well. But in the next moment, a gentle, almost imperceptible breeze began to coax its way in over my shoulder. Like a whisper, it snuck into my ear and caressed me with the softest touch of a cool breeze. As I noticed it, I smiled, immediately thinking that God was behind this whisper. As I held that thought, the breeze gently increased, but ever so slightly, like to say, "yes, it's me." but, again, only in a whisper. After enjoying the whisper and feeling it pass through the cabin of the minivan, it drifted away, along with it the heated air trapped within. I looked up at the sky, and whispered back.

"Thank you. That was perfect."

Just some trickling water and the faintest of breeze can nourish the most tired of us, inside and out.

God bless the little things.

God bless you.

Tuesday, October 20, 2009

This Just In!

Well, take the good with the bad, right?

The Bad:

Our new insurance company (beginning in Jan '10) does not cover clinical trials either. The only circumstance is when "death is less than 6 months away..." So, we have to convince them that due to the high risk of secondary infection (like the one she just was in the hospital for 5 days with), she could contract MRSA and die at any time, theoretically. That is morbid, but it is also a reality.

As my friend Trevor said, though, "Save your kid first, pay for it later."

Okay, onto the GOOD NEWS:

I just got an email from the Program Supervisor at U of M Bone Marrow Treatment Center, Tim Krepski. We did the HLA Typing test to see if Bella and Ali were a match about a month ago. All it took were a few swabs on the cheek from each and voila! Well, Here is his email:

Hi Tim,
Just wanted to confirm some good news for you. The tissue typing results are final on Anabella and Alessandra, and they are identical.
I hope that all is well, and we'll wait to hear from you to reschedule your consult here with us.

I think that's a good sign, right?

I am waiting for a call back from Tim to explain it all in further detail. We won't be making plans to go out there till January now since November is already full of travel commitments and Dec is holiday airfare.

Anyhow, we are grateful for this news and feel blessed indeed.

Also, yesterday was Bella's first day at daycare and IT WENT GREAT! They are happy (so far) and we are happy (so far) so, so far so good!

Thanks again for all your prayers and good intentions.

Friday, October 16, 2009

Training Day

Well, today was training day at Joan's house! It went really well. Poor Joan was a wreck when I got there. I could tell she was really nervous. I took her through a diaper change and bottle/tube feed on Wednesday, and did it all again this morning for her. Then, for the noon and 3:00 feeds she did it all on her own with my coaching. She did great. She's gonna be fine. Her biggest concern is accidentally lifting Bella from under her armpits. That's a big no-no...just ask Nanny. DOH! Seriously though, she's been lifting babies 'normally' for over 30 years, so she knows she really needs to pay attention with Bella.

I "Bellafied" (as in modified for Bella) the two swings we bought as well as the outdoor pack and play. Inside, she's starting out in a cradle Joan has, because the pack and plays are just too low to pick Bella up safely from, or I should say the rails are too high. On Monday, I'm bringing an attachment for the pack and play that raises the floor significantly so we can spare Joan's back and give Bella a little more room to move around, because she is AS BIG AS A HOUSE!

WE ARE SO GRATEFUL Joan is willing to take Bella on! We are doing a two week trial 3x a week and then we'll reassess and see if it is just too stressful or time consuming for Joan. I hope it works out; Bella was delighted in all the kids to smile at today! She is perhaps even more social than Ali. For those of you that know Ali, you know that's almost impossible, but she connects with people in a way Ali never did at only 4 months. It's awesome to watch.

Alright, that's enough...just a quick update to let you know how the big day went. Thank you all for reading this, thinking of us, praying for us, and reaching out, offering to help out in some way or donating to the fund. All of these things help keep us afloat. I don't know how we could survive this without YOU. Thank you.

Please include in your prayers for healing the following people:

The Sheridans
The Corradins
NIck on 5D
Chelsea's Dad
Dr. Wagner's mom & family

Good night, and God bless you.

Wednesday, October 14, 2009

What did the world do before plastic and rubber?

Pound that bottle!

I was just thinking about the rubber tubes that connect to the plastic button sticking out of my 4 month old's abdomen.

Dr. Waldman, our AMAZING anesthesiologist, explained the answer bluntly. He said that when he starting treating EB kids 30 YEARS ago, they only lived till they were 6 or 7. By then, the malnutrition was so bad, they couldn't stay healthy and would just die from malnutrition or complications related to malnutrition.

The reason to put a G-Tube in a perfectly plump 4 month old has seemed to escape some people we know recently, so let me just reiterate as Dr. Eichenfield, the senior Pediatric Dermatologist at Rady's, says...

...the KEY to EB is NUTRITION,

and the KEY to nutrition is THE G-TUBE.


his other mantra is...

Once you fall behind nutritionally w/ EB,


Case and point, until the G-TUBE, Bella had never gotten up to the 32 oz a day she required. Now that the tube is in, we are hitting 32 ox every day, and her blisters have decreased in size, severity, and frequency. Her mouth has never looked so good. When she gets fussy over a bottle, NO PROBLEM. try the pacifier for a minute or two, and if she still won't take it....just dump it in the tube and everyone's happy. No more 60-90 minute force-feeds where we are literally squirting formula into Bella's mouth. That was the worst. BUT, all the Docs praised how fat we got her despite her condition, so it was worth it I guess.

Other news. I took Bella to daycare today to assess equipment needs. Joanie, Ali's phenomenal in-home daycare provider has agreed to watch Bella. She has had a child with a feeding tube before, and considers us family. In fact, THREE times this morning while discussing EB with her, I watched her tear up at what I was saying. We are starting out 3x a week, just like with Ali. In fact, Ali went to Joan's at this age part time as well, then transitioned to full-time at 6 months. We are THRILLED with Ali's social development so, we want to provide the same opportunity for Bella.

Today, I trained Joan on bottles, tubes, and diapers. Ang typed up a detailed quick reference guide (QRG to all you Verizoners!) for Joan as well. On Friday, I will spend the day at Joan's. I will do the first feed and diaper, then observe her the rest of the day, providing instruction, training, and coaching on best practices for Bella's care. After Joan's, Bella and I made a trip to Baby's R Us and bought two new plush swings for Joan, one for inside and one for outside...Joan has an awesome giant covered back patio. Tomorrow, I hunt for foam for the two pack and plays as well as plush sheets to go over them.

We have agreed that Joan will watch Bella for 2 weeks mon-wed-fri till the end of the month. Then, we will re-assess to see if everyone is happy, or to what accommodations need to be made. If it doesn't work, hey - at least we tried, and so did Joan. You have to TRY really can't predict what's gonna work and what isn't. Plan B is a nanny that comes to our home....more expensive and less socialization, but better supervision and safer. Plan C is daddy daycare, but my student loan and the past 5 years of schooling and training really are pulling for plan A to work out! :)

Yesterday we got trained on the feeding pump that arrived earlier in the day. Kelly, our home nurse, came out to train us. It was nice to have the same nurse so she could see Bella's progress. She couldn't believe how big and fat Bella got! Now we have an automatic pump set up in Bella's crib that we can set to deliver the midnight and 3 am feeds on a slow drip. "SET IT AND FORGET IT, RIGHT RALPH!?" It's like a crock pot! Anyhow, we are a little hesitant to try out the overnight hook up due to Bella's recent nocturnal activity. Perhaps once she settles back into her routine, it'll be easier on everyone. The two hospitalizations combined with mad amounts of narcotics and antibiotics have thrown her for a loop. She doesn't know which end is up. Last night was better than the night before THANK GOD, so hopefully her circadian rhythm is on the mend.

Next up is to reconvene with Minnesota to reschedule. We were supposed to meet with Dr. Wagner THIS MORNING! We just didn't have it in us to do three hospitals in three cities in three weeks. Gotta pace ourselves. Plus, we're in the middle of a total insurance BUNGLE right now (more on that later) so we can't move too fast with U of M presently anyway. It's ALL GOOD. Dr. Wagner is still relatively in the dark ages of EB BMT (only 16 months into clinical trials with an N=7) so it is FAR from a perfect model, and he seems to be tinkering with his research methods with each successive patient. That drives me nuts on one hand, though I understand his reasoning. He's a little to renagade for non-profits to start sending him $$$, so he has to do his own fundraising, but consequently, he is the cutting edge of a potential cure for RDEB.

Alright, enough for now. I don't fully understand who is allowed to post comments on here and who isn't, I thought I set it up so anyone and everyone could. Either way, please drop us a quick comment and let us know you're still out there whoever you are! Your comments got us through the early days, and we miss them. Thank you to those who have stuck with us. we really appreciate you in our lives.

Please add the following people to your prayers: God knows exactly what they need, so remind him of that, and suffice that if you share their name, SHE'LL know what to send them. ;)

The Sheridan Family (including cousin Chris)
The Corradin Family
Chelsea's Dad
Nick on 5D

Thank you all for your love and generosity.

Sunday, October 11, 2009


So much to share...gonna hit you with a photo essay this time...

We had to strap Bella down after surgery like Sampson so she wouldn't 1) dig out her eyes like she likes to 2) smack into her new button or 3) kick out her IV with her heel.

Ali striking a pose in daddy's chapeau in their room at the new Ronald McDonald House. Please donate to them wherever you are. They saved us $500 in hotel fees over 4 days we were there and fed us, too...not to mention being walking distance to the hospital.

Out to dinner with Ali and Grandma the night before we discharged. Thanks again to Grandma and Grandpa for stepping up and helping us keep the family together through this ordeal. We can't tell you how important that was to us.

Bella's temp ran cold throughout the stay and the room alternated between meat locker and sweat lodge...this shot was taken during meat locker hours.

Check out my new button! (Sweat Lodge hours....)

No words necessary

Something tells me Bella knows more than we think...could it be...HER EYES??? What an old soul as several people have pointed out. We agree. We learn from her daily.

Ahhhh, happy to be back home chillin' in her favorite lounger in the living room. Victory!

The G-Tube is AMAZING! Thank GOD we got it because as soon as we got home, Bella had NO INTEREST in her bottle after 2 feeds. No problem! Pop it in the gravity tube and slide it in! It is sooooo easy to deal with feedings now. And, because of all the fluids she's been getting and all the extra fluid from flushing her tube after every feed and medication, Bella's skin is looking GREAT!

Dr. Eichenfield (Pediatric Dermatologist) and Dr. Waldman (Anesthesiologist) have been at it for over 50 years with EB collectively. They both said that the key to EB is nutrition, and the key to nutrition is the G-Tube. They congratulated us on being so proactive with getting the G-Tube and really flattered us for getting her so fat despite her condition! It really made us feel great to hear that from those two guys...they KNOW EB. We also really appreciate all the support all the EB families gave to us in encouraging us to get the tube early. That really gave us the confidence to put a feeding tube in a 4 month old that is 50th percentile in weight for her age and 75th percentile in height. One thing Dr. E. mentioned that will never be forgotten by mommy or me is that once you fall behind with EB, you never catch up. THAT is why we have been so militant in feeding this little angel. Seems like it's working.

Now, we wait with baited breath for the kangaroo pump that will be arriving early in the week...can you say...



Good night. God be with you all.

Wednesday, October 7, 2009

Surgery Day!

2 of my 3 beauties that I am lucky enough to be a family with!

Hangin' around waiting for the call from the OR

So, the day started peacefully with no real hick-ups except that we couldn't connect with our CHOC NICU nurse in time to get her in to the surgery. No worries, I took lots of pictures of the EB CART they have dedicated for EB patients. Anyhow, we asked that I be allowed to sing Bella to sleep while the anesthesiologist puts her under as well as take pictures of their OR supplies for CHOC. The anesthesiologist (by the way, anyone know a shorter nickname or abbreviation for a-n-e-s-t-h-e-s-i-o-l-o-g-i-s-t? It's such a long word to type repeatedly...maybe I'll just refer to him as Dr. Waldman, after all, the man does have a name...) didn't seem too excited to grant my requests, but he went along with it.

We brought Bella in, and I sang her "Bella's Song" and she was out by the time I got to the first chorus. Then I took pics of the cart and its contents and left. As I was leaving, I reiterated how great it would be if we could do Bella's dressings while she was still out, either in a PACU isolation room (PACU = Post Anesthesia Care Unit...I think) or the PACU itself. Dr. Waldman wanted to wake her up before she left the OR (which I thought was a little weird, but he's the expert) so he again didn't really dig my idea. He asked, "How long does it take?" to which I answered, "If she's OUT, 20 minutes. If she's awake, 90." Then I walked out the door.

We hung out in the waiting room for maybe an hour when we got the call. "They're gonna let you do the dressing changes in the OR!" the volunteer said to us. We went into a prep room and gowned up, and then were led into the OR. WE immediately got to work. The Surgeon, Dr. Kling, Dr. Waldman, and the Surgical Tech ( I'm sorry, I don't remember his name ) were present still, as was a med student from UCSD. Ang started immediately on the left arm and leg while I started prepping bandages. We ignored everyone and dropped into our own surgical mode that we work in. Within seconds the surgical team started talking among themselves about how fast and organized and professional we were. One of them made the comment that we could work there. Ang was doing the ABC wrap on Bella's left leg and the two Docs were audibly impressed with her technique. I think they were a little incredulous that parents of a 4 month old could be so facile so quickly, but that is the way with EB, we need to figure stuff out as fast as possible to ensure the best possible outcome for Bella. That is why we're doing the G-Tube at only 4 months. Nutrition really is the key to staying one step ahead of this - let me remind you - fatal disease.

Anyhow, as the cheerleading and compliments continued, I asked Dr. Kling if she wouldn't mind taking pictures for us. She was into it! She started snapping away. Of course, this was after I got to politely ask her to step aside so I could wrap Bella's right hand. That was really funny. I told her, "I can't believe I'm getting to say this, but, pardon me..." then I moved into her spot and she got out of the way! I was definitely in my element in there though. I've always joked that our wound care procedure resembles surgery in its precision and clinical calm demeanor that we approach it with.

Anyway, we finished time? 20 minutes. NAILED IT!!!!

Dr. Mommy and Dr. Daddy working on Bella simultaneously in the OR

We went back to the waiting room for a short while and then got a message stating would one parent come to the PACU. Ang nominated me, so I went back. Bella had a painful awakening from surgery so they re-medicated her and asked me to help sooth her as she came out of her snooze. I started singing her song again, and a short time later, Bella's nurse came over and said, "The entire team in the OR said that that song you sang to her was a real tear jerker!" Meanwhile, I had explained to Dr. Waldman that, as a music therapist, I use music with Bella to cue a relaxed response from her. He just looked at me flatly while I was explaining that, but once he heard and saw it, it was another story altogether. Music therapy is like love. You can tell someone about it all you want, but its meaningless compared to when you personally witness or experience it for yourself.

Bella striking a pose while recovering back in her room

A chaplain came to visit us shortly after we returned to our room and we talked for a while about the while about our whole journey and how faith had transformed it into an inspirational walk full of abundance and love. The chaplain commented how she couldn't believe how unbelievably calm we were in the moment giving what was going on. We explained that this is a marathon, not a sprint, and that we pace ourselves emotionally so as not to burn out. We also feel genuinely cared for by our friends, our family, the staff here at Radys, but most importantly by our faith. We are also reminded of our family-in-arms The Sheridans who are going through the BMT clinical trial at U of M and how Sam and her mom Marybeth have been in the hospital for almost 2 months straight enduring the most intense life threatening leg of Sam's 14 years with this disease. I can't even wrap my head around their current stay, much less all they have gone through to date, and their faith is every bit as strong and steadfast as ours. We look up to them so much for courage, and perseverance. THANK YOU Marybeth and Sam!

While the Chaplain was in the room, a short while after describing what I do for a living, Bella had a pain episode when we tried to switch who was holding her so I could eat. She "seemed" peaceful and out cold, but when I handed her off, she arched her back, grimmaced, turned red, and let out repeated, tired, pain-filled cries for quite a while. We immediately turned our attention toward her and as Ang got her comfy in her arms, I stroked her forehead, held her hand while Bella held Ang's and I once again sang her her song. This time I had to sing all 3 minutes of the song plus hum it over again before she settled down. It usually works much faster than that, but hey, 6 minutes to calm a 4 month old that just had open abdominal surgery? We'll take it! Anyway, once I stopped, the chaplain quietly whispered, "So that is what you do, isn't it? I just felt the calm and peace in the room, and can see how patients would be so uplifted by that. Wow. Thank you for letting me remain in the room." Really, I was grateful to have her calming, peaceful presence in the room. It gave us the space to completely turn from her and "care for Anabella."

Being loving parents is perhaps one of the greatest ministries available to us all. I am so grateful we are Bella's parents.

This group hug was Ali's idea before we split up on Monday to travel to SD

Thank you for all your prayers and intentions/vibes/ and thoughts. They made this day truly peace-full! Now, please pray that Bella heals w/out infection here in the hospital, but also pray for the following people. We would appreciate it so much:

May Barbara's surgery on the 16th have the positive outcome she is praying for.

May Greg's rehabilitation be swift and complete

May Sam's body heal fast and may her pain be minimized

May Chelsea's dad heal from whatever it is that got him

May my mom recover quickly and fully from a nasty flu that kept her from coming down here with us.

Thank you so much. Bless the positive power available through this amazing thing called the internet.

The Team is introduced

Okay, it's amazing what can happen in 24 hours.

We feel SOOOOO much better about EVERYTHING.

Lot of changes to the plan both in and out of the hospital.


Nanny came down with the flu today and Grandma stepped up on NO NOTICE to come down and help with Ali so we could keep the family together through this hospitalization. We are SO GRATEFUL to her for doing so. She's gonna be a little out of her element, but we hope to revive the adventurous spirit within her by sending her and Ali on all sorts of missions and excursions. Say a prayer for Nanny that she gets better, and for Grandma that she survives and enjoys the journey down here in SD!

Thanks to our friends Pete and Maria who are taking ALi with them to Disneyland tomorrow. Thanks to Mike and T for taking her last weekend. Ali LOVES D-Land, so anytime our friends are going and Bella's in the's a win win for everyone.

Thanks to my friend and esteemed NICU MT colleague Kat for having Starbucks for Ang and I delivered to the front door each morning! Kat, I walked by the meeting room where we presented the research on NICU Music Therapy to the Cardiology team here last fall and smiled fondly of that experience.

Thanks to Susan Hermes and Danial Jones for their strong recommendations to work with Dr. Larry Eichenfield down here. The guy is amazing. He trained our current Pediatric Dermatologist in OC, Dr. Metz (of which he in turn spoke incredibly highly of). The guy has been in EB for decades and is still hip to all the latest research happening at home and abroad. He knows EVERYBODY, but has NO EGO AT the combination!

So, onto business. The surgery is set for 10:10 tomorrow morning. Dr. Cling, our surgeon is AWESOME. She has experience working with EB kids, so this is nothing new to her or the rest of the team. We are trying to get our NICU nurse from CHOC, Tanya, into observe the procedure to see how they prep an EB patient.

They will be putting in a g-tube with a button on it so it is low profile from the start. We'll remain in the hospital till at least Sunday to make sure it works and we have a successful feed strategy in place that gets Bella back up to the calories she needs daily to grow and heal.

Please pray with me...

Dear God, thank you for providing us with such a wonderful, experienced team to make our family's life better by safely implanting this cute little button and feeding tube in Bella. Thank you for keeping her infection free while here in the hospital.

God, thank you for providing our friends in Minnesota the Sheridan Family with continued strength, peace, and healing.

God, thank you for providing a fellow EB dad Greg with a speedy recovery from a stroke he recently suffered.

God, thank you for providing Dr. Wagner's family peace and comfort during their time of mourning the death of his mom.

God, thank you for bring peace, strength, and healing to one my mentors and friend Barbara as she deals with some scary tests and surgery related to Melanoma.

God, thank you for swiftly healing my friend and MT colleague Chelsea's dad from his recent illness.

Thank you so much for praying with me.

Good night.

Monday, October 5, 2009

We have no words... explain what we are doing admitted to a hospital on Monday. Apparently, we weren't on the schedule for surgery. at all. Then, we were told we are on the schedule for Wednesday. So, why did we admit today? No one has an answer.

Not a good start. it started with a call this morning saying Cigna wouldn't cover the procedure. They felt Bella's procedure is an outpatient procedure. It took about 5 hours and several phone calls among doctors, supervisors, etc. before they ok'd 1 NIGHT in the hospital. Great. So much for that night.

Ronald McDonald house is nice, though! Too bad, only one of us gets to stay in it while the other has to stay by Bella's side. We're gonna take shifts alternating each night so neither of us run too low on energy.

On a positive note, I met the CEO of the RMH, Bill Lennart, tonight. Super nice guy. I told him I brought all my instruments to let the kids in the house play at dinner time, but didn't know who to coordinate with. He was blown away and introduced me to the COO. I'm supposed to call her tomorrow to see which night this week is open. They have an awesome little outdoor amphitheater that will be perfect. That'll be cool.

Ali and Nanny are coming down with Grandma and Grandpa tomorrow, and Ali and Nanny will stay at RMH. Good thing they arrive tomorrow as RMH an Rady's go into lockdown on siblings or visitors besides mom and dad. because they get in tomorrow, RMH will let them stay...grandfather them in. We've been telling Ali all weekend that she's going to Sea World this week with Nanny so we're glad they can stay.

Anyway...hurry up and wait. The Doc that admitted us was TOTALLY cool and great to work with. We changed several of the standing orders to accommodate Bella. For example, they wanted to start a TPN due to a "failure to thrive" note in her admissions paperwork. WTF??? She's 50th percentile weight and 75th percentile in height folks. There ain't no failure to thrive goin' on here. Anyway, we explained she is taking her feeds just fine and that and IV is dicey with her due to not being able to use adhesives. He agreed and put off an IV until surgery time and no labs until they start the IV. Those are positives, so we'll take the positives where we can.

Alright. Time for sleep. HOpefully we get some straight answers in the morning. Ah, hospital/insurance red tape. Good times.

Tonight, please say a prayer for the following people: Sam, Greg, Chelsea's dad, and Barbara. Each of these people could use a prayer for healing. It would mean a lot to me if you would add their names to your prayer list. Thank you so much.

3/4 of Team Ringgold wishing you the best!

Sunday, October 4, 2009 GO!

Well, there's room at the inn. There's a room waiting for us at the Ronald McDonald House in San Diego. We can check in any time after 8:30 tomorrow morning, and we'll probably stay thru Thursday if all goes smoothly. Honestly, they haven't given us a clear picture as to how long before Bella can discharge after surgery. Heck, we don't even know for sure what day her g-tube is going in...nothing like uncertainty. If it is Tuesday, we were joking today that we should talk the docs into letting us do her dressing changes while she's still sedated! At least they'd go better than they have lately...

...the good news is, however, that Bella is knocking back her bottles while wide awake! We are back to 5 oz a bottle, but are not fortifying them with any extra formula...just the 1:1 recipe on the box. However, we're spacing the feeds out to q4 hours instead of q3, so she's still not getting the total amount she should be, but we've been ramping that up daily and she's tolerating it...for now....

...the bad news is she is no longer tolerating dressing changes. WE had to stop during the past two wound care days to give her a break because she just LOSES IT on the table and we are unable to calm her down. So, the time we made up not fighting over 60 minute bottle feeds just went into dressing changes, but at least that's only 3 times a week (Tue,thu,sat). It is really rough on the psyche to change her dressings when she is screaming at the top of her lungs and turning three shades of red and purple. It's kind of distracting, and really wears on my concentration...never mind my SOUL. I have to turn off my daddy connection to her while we are wrapping her, and just look at each limb/body part at a time as a puzzle that needs solving. It's my coping mechanism for not being heartbroken at the sight of my very broken-looking baby. I don't know how many times I've punctured my baby's skin with a needle to relive the pressure of a blister, but it's been enough times that I've named her needle "Shirley." No idea why, really...just seemed like a sick and twisted attempt at gallow's humor. Hey, whatever works.

Tonight, Ang busted out some baby pics of Ali to compare just how much they look alike, and while the pics were super cute, my heart just BROKE because I saw Bella with perfect skin, and knew it wasn't her. It was weird. When I saw pics of Ali grabbing her naked hands, I caught my breath thinking she was going to hurt them. I had to remind myself that I wasn't looking at Bella, but the resemblance is amazing in some of the pics. I was in daddy mode when I was looking at the pics, so it got to me.

On a lighter note, I dragged my carcass out of my condo today and got on my mountain bike for the first time in 3 years. I had been playing soccer sporadically over that time to stay in shape, but my back injury has pulled me out of that for a while, and I've been pretty blue of late, so I knew I needed to get outdoors and get my blood pumping again. It was a PERFECT day, clear, sunny. Beautiful. It felt great to get off the concrete again and tear it up on the trails, even if for only a short while. I'm pretty outta shape, so I didn't wanna push it and risk injury.

So, here's the plan. Tomorrow morning at 8am, we call Rady's and talk with the house supervisor to see if we can admit Bella tomorrow and if so, what time. Next, we call Dr. Eichenfield's office to see what time in the pm they want to see Bella. Then, Ang, Bella, and I will drive to SD and check in to the Ronald McDonald House first to set up shop. From there, we'll head over to the hospital and either see the docs or admit Bella, whichever comes first. We think the procedure is going to be Tuesday, but again...none of this is written in stone yet.

Then, on Tuesday, Grandma and Grandpa will pick up Nanny and Ali at our house and all head to SD together. Nanny and Ali will stay for the remainder of the week with us at RMH and take day trips to Sea World and the wild animal park, etc. The cool thing is that currently (knock on wood) Rady's is NOT on H1N1 lockdown like CHOC was last week, so Ali will get to visit Bella. We've been taking Ali out on excursions while Nanny babysits Bella lately so Ali can feel a little more included. It's been great. Now, she can be a part of this next journey, and she is very excited.

Lastly, I just shared this in an email and I thought I'd share it with you all as well... I must admit that I am scared SHITLESS to let Bella out of my sight, even though I know this team has operated on several EB kids...control vs. trust. Last round, I controlled the situation by being in the room 24/7 and not allowing a single human to touch my daughter without my consent...and it seemed to work. Now, I have to turn it over to God and trust that the same outcome is available. Sometimes it’s easier said than done. It’s not that I don’t trust God, it’s that my NEED TO CONTROL is sometimes stronger! I am, and always will be, a work in progress.

See you in San Diego!

Friday, October 2, 2009

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?


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 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!