Monday, April 26, 2010

Ronald McDonald House, Here we come!

Quite the little airline traveler, stole my seat AND my hat!

Well, we're back from another trip to MN.

This time, it was to scout out lodging for the rest of the family Bella's BMT this summer. We flew in Friday evening, looked at 5 different properties Sat, and flew out Sunday morning. Oh, and we even planned a dinner party at the Mooreland's (founders of PUCK) on Saturday night! WHEW! Ali hung at out grandma's and Bella, mommy, and daddy made the trip. This was Bella's 4th airplane trip in her first 10 months! She's pretty easy to handle, but she is SO BIG that we can't do the lap thing any more! Holy cow, you should have seen her stretched out while napping. Our arms nearly fell off from the weight alone! Never again.

We checked out all different shapes and sizes of living arrangements. We saw brand new lofts downtown, an extended stay Marriott, the RMH (Ronald McDonald House), and two apt. complexes in St. Anthony, the town adjacent to the University just to the north. Like anything, there were pros and cons to all of them. RMH, though made it on both of our top 2 finalist lists immediately, and then from there is was an easy pick.

What's funny is that neither of us at 9 am were thinking about RMH as an option. That changed the moment we parked in front of the house.

First of all, it is across the street from a quaint little park and walking distance to the hospital. This means, that when we have to go back and forth for tests after discharge, we won't need to ride a shuttle or public transportation, which is a good thing, since Bella's immune system will be next to nothing.

Then ,we walked in through the front door and Ann, the weekend manager greets us, takes one look at Bella, and says, "Now let me guess, EB." Then she proceeded to speak personally of her affinity for each other EB child that has stayed there during this clinical trial by name. No explaining to do here.

After brunch, we toured the house... I mean HOUSES. Technically, this RMH is 4 houses connected by one massive first floor. Yet, every inch is cozy and comfy feeling. This is the complete opposite of the DORM we stayed in in San Diego atop the parking garage for Bella's G-Tube insertion. Night and day, folks. We were amazed by how different (and better!) this RMH was compared to San Diego.

I could go on and on, but suffice to say that this property is like a mini Disneyland for Ali. Also, the kindercare Ali is going to go to is also within walking distance of the house! Ang is going to work from home 4 days a week, which means she can walk Ali to kindercare, walk back, and work from our special, giant BMT suite we'll be staying in, and she can cruise over to the hospital to bring me real food (are you reading this, Angelique? wink wink) for lunch, then walk over to pick up Ali, and have dinner prepared every night of the week with Brunch on the weekends as well. Aoh, and Ali gets movie night twice a week complete with free popcorn in their own in-house theater room! KILLER. Good stuff all around.

Bella knows she can always lean on her big sister...

We are really excited, and quite frankly, I am ready to pack the minivan today and go. We are waiting till June so Bella can have her first birthday here with so many of the friends and family and faith community that helped her reach this milestone. Frankly, most first birthdays are for the parents for surviving the first year, but this one truly is for Bella. She's the one who's done the surviving. She is as strong as an ox and while she deals with blisters and teething, she is still sweet as a peach...

...until bed time... she reallllllly doesn't like the sleep thing. Someone actually called the front desk to complain at the hotel because she was WAILING at midnight for so long, that a neighbor thought she had been abandoned. No, really. The girl at the front desk said when I answered the phone, "Oh. there IS someone there with the baby. Okay, thank you." and hung up. Really. Not joking.

Get the coffee in the pot! Daddy's a grumpy bear without it!

We also want to close by saying thanks to the following people: Grandma and Grandpa, Joe Polish, Paul Ringgold, Jackie Gardella, members of the Disciple's Women's Group at church, and the anonymous donor from Harbor Christian Church. These people all donated cash or frequent flyer/rewards miles/friends & family rates to help us on our two trips to MN and one to NYC. Each trip we took, someone or ones stepped up and volunteered to help us along the way. There have been COUNTLESS examples of this generosity these past 10 months, but we just wanted to publicly acknowledge that these trips were made possible through the love and generosity of these folks. It really does take a village to raise a special needs child, and thank GOD, we have that village. What's really cool is that this village is stretched across the map, and thanks to the internet and email, we can be connected and reach out into each others' lives to lend a hand when a hand is needed. Thanks again. We promise to pay it forward.

Last but not least, if this series of shots doesn't melt your heart, nothing will...

Sunday, April 18, 2010

Picture Essay from Bella's G-tube Insertion

Hi all!

Tonight's post is a little unusual. I am posting all the pictures from Bella's G-Tube insertion back in October. There is another EB Baby having one placed at the end of the month, and the family is not as lucky as we were in that their hospital doesn't have 30 years of experience operating on EB babies. So, we took tons of pics during Bella's procedure to share with the community. Originally, we took them to share with our local hospital, CHOC (Children's Hospital of Orange County), so CHOC could develop an EB surgical team, but then I got busy. At least all this work can now be used THIS MONTH somewhere else in the country, so it wasn't all for naught! Here we go:

Items to assist in securing intubation to face. I believe that is vaseline infused gauze.

Front of their EB cart that resides in the O.R.

How awesome is is that they have a dedicated cart???

Top of cart had supplies prepped for surgery. Here's a sneak peak at what was underneath... First up, bottom right corner.

Top right corner

Top left corner

Bottom left corner

Bottom Drawer... EXPOSED!

Specialty Dressings... UNDRESSED!

Dressings Drawer... what would be witty right here?

Wound Care Team. We convinced them to let us do Bella's bandages while she was under sedation. They were a little hesitant at first, but we apparently appeared "on it" enough to get access to the O.R. It was AWESOME. Ang and I make a really good team. The O.R. team was really impressed. That made us feel really good. That's a pretty qualified opinion!

Bella going under. Mask was covered in aquaphor before placing on her face. I sang to her during the process her Birth Song, and I didn't even get to the chorus before she was OUT.

Close-up of intubation set-up. There were no injuries to her head, face, mouth, or esophagus as a result of the procedure. Good job, docs!

Different view of head dressing. You can see the foam pad and air pillow better from this angle.

Close-up of surgical site. Incision was made for G-tube as well as second incision to anchor it about two inches to the center. Mepitel was glued over surgical incision and stayed on for several days. No harm done, scar healing nicely. We now use mepilex lite under button to protect against friction and absorb any drainage as the opening healed. It oozed stomach juice for several months at a slowly declining pace until now where it hardly oozes at all. We still clean the site daily with a Q-tip dipped in 50% water 50% hydrogen peroxide. the dark spot to the outside right of the button was a blister she had going in to surgery that was totally unrelated and ended up healing fine with no scar.

Little cherub out cold after surgery back in her room. Notice the IV placement was in the right foot, and yes it is a bitch for EB kids and yes they deliberated long and hard over where to do the IV. They did not use sutures to secure the IV, although (pardon my french here) an ASSLOAD of that gummy wrap you see above was used over a CRAPLOAD of rolled gauze to try to keep it in place for as long as possible. We had to do a cranial IV the week prior at CHOC (had to do three different placements as it kept coming out due to Bella being a squirmy (read: normal) baby. That SUCKED. Each placement took like 4 of us and never got done in less than 2 hours. Ugh. THIS was MUCH better. It stayed in till it could be D/C'd . How did it NOT get yanked out, you ask? ...

...because the poor girl was tied down for the next 3 days practically! No joke. Look at how each appendage is secured so that she won't a) wreck her IV and b) wreck her new button. She was a trooper through it all. Didn't hurt that we kept the happy drugs FLOWIN'. No time to be puritan about pain meds as discomfort causes maximum squirmitude. Yes. That's a word. No. you can't use it in scrabble.

Here's the little trooper recovering well enough to have her arms released! (how nice of us, I know) I recommend lite under the button rather than mepitel as it often (as was the case here) got stuck to itself and would bunch up easily. Double sided tape will do that to ya!

Alright, I hope this helps those of you who are either considering this procedure or preparing for it. It was the BEST THING we've done for Bella to date. As Dr. Eichenfield, the eminent Pediatric Dermatologist in San Diego and resident expert on EB said to us,

"The key to EB is nutrition, and the key to nutrition it the feeding tube."

Before the tube, we STRUGGLED to get 20-24 oz a day into Bella, and I mean STRUGGLED. It was awful. Feeds frequently took 90-120 minutes and had to be timed so that Bella was dozing in order to tolerate the bottle. If she was too alert, no deal, and if we waited too long and she fell asleep at the beginning of the bottle, no deal.

After the tube, we got 30-36 oz a day into Bella without so much as a whiff of trouble. Any time she couldn't or wouldn't tolerate a bottle, NO PROBLEM, snap that tube into place and go! Late night feeds were done without having to wake her. That was awesome in and of itself! But most importantly, we got her caloric intake up above what her GI doc and nutritionist wanted, and feeding became fun again! No more knock-down, drag-out bottles.

Now, 6 months later, Bella is 90th percentile in height and weight and 110% Weight to Height ratio, which is RIGHT ON for a typical child at her age. In other words...


We are extremely blessed that all is going so well, and that all went so well with this procedure. We recognize and give thanks that we have walked through the Valley of EB with a lot of success to date, and do so humbly in the memory and in the face of so many other EB kids who haven't fared as well. We take our successes with thanks and humility with full understanding that at any moment it could all change for the worse. EB is like that. Every day is a gift. Period. Thank you all for walking the journey with us. If you are reading this, you are walking this journey whether you realized it or not. We see you there, we feel you there, and we give thanks that you are there. You lift us up when we are too tired. Thanks for that.



Monday, April 12, 2010

Ali turns 4!

Ali on the stairs waiting to meet Ariel... LAST year...

...Ali in practically the same spot waiting THIS year. [BLINK - BLINK]

Just like that, we're back at Ariel's Grotto in Disney's California Adventure. I still remember last year's dinner there. How Ali and Cinderella both had on silver shoes. How Sleeping Beauty colored with Ali, then danced with her outside on the terrace patio. POOF! A year and a baby later, we're back for more over-priced Princess madness - er, uh, I mean - MAGIC! LOL.

Ali turned 4 yesterday. A fact that I can't quite believe. Oh they grow up so fast they say... they ain't kiddin'!

I was away Wed-Sat on business, and when Ali got up Sunday morning to tell me all about Saturday at Grandma's, I was listening to a completely articulate young girl. It was surreal. It was like she had grown 6 months in 4 days. Not just her vocabulary, but her expressions, facial expression, and comedic timing are all far beyond a child just turning 4 - I gotta believe. I know, I know, proud papa.

[Bella] "Hey! What the hell is THAT??"

All is pretty good on the Bella front. She is as healthy as an ox, and her left leg has remained closed and healed for perhaps its longest spell since birth. YAY! Finger nails are still falling off, which makes me sad, because I was hoping to get to and through BMT (the bone marrow transplant) with as much of her nails intact as possible so she could have a shot at having normal, girly fingers, but it looks like she'll be missing at least 2 maybe three nails per hand by the time we make it to MN. The challenge is that in order to cut those super rounded nails, it takes some special, angular snips. The trouble begins when the clippers grab the nail imprecisely, and Bella flinches. Just that involuntary, reflex tug is enough to separate all the skin under and around the nail from the end of her finger. Then, the nail just falls off eventually.

In one sense, the fact that she's already lost both thumb nails works to her advantage currently as she is attempting to suckle her thumbs when she is tired. She doesn't "suck" them per se, but she mouths them, and a couple of snaggly nails messing around in her mouth would not be a good thing.

Ang has started giving Bella vinegar baths. They seem to help keep the bacteria away, but man, the bathroom will never smell the same! LOL. It's the new smell of a clean baby, I guess.

Hey Ali! Look at the camera...

... wait - no - Bella! Stop looking at the giant Mickey Mouse head on the Ferris Wheel!

Later this month, Ang, Bella, and I fly back up to MN to scout out our lodging situation. Currently, we're leaning toward renting an extended stay apartment. RMH (Ronald McDonald House) = lots of kids = lots of new and different kid bugs visiting from all around. I suppose the same could be said for an extended stay. We like the idea of a full kitchen, and especially of laundry and maid service being handled. That is one thing that has perpetually suffered since Bella's arrival here at home, so to have that handled would be nice. Also, having two actual separate bed rooms would be nice since we'll be having visitors in helping from time to time throughout the stay. We've pretty much ruled out furnished apartments since a lease is a mess to deal with in the midst of everything else. Anyhow, we'll keep you posted.

Okay, off to bed. A sinus infection has crept in to my head and the jackhammers are jackhammering!



Saturday, April 3, 2010

Happy Easter!

Well, we've made it to Easter, and we have so much to be thankful for. We spent Saturday at Grandma's and Grandpa's house with Bella, Ali, and their uncle Steve and aunt Dina and cousin Wil, and new baby cousin Molly. It was a beautiful day, and the older kids had an easter egg hunt and the babies, well, they did their thing as babies. Eat. Sleep. Lounge. You know, the good life!

Ali Delighting in the Easter Egg Hunt

On the book front, we are excited to announce our featured partner for the month of April, MUSIC TO HEAL. Music To Heal is a non-profit organization that funds music therapy programs in children's hospitals in Southern California, including CHOC, where Bella has spent 17 days this year, including her first 12 on the planet. Please read up more about them on our Featured Partner page! I had the opportunity to provide some training to their volunteers last week and they are just a great young organization full of life, passion, and a giant heart.

On the wound care front, things have been going very well for the most part, until today. We had our first sign of a possible Pseudomonas infection in one of Bella's wounds. When I took off one of her dressings, the underside of the dressing was neon green, a color we have never seen on her. Immediately, Ang thought it might be Pseudomonas because after reading about it in a number of other EB blogs and websites, she remembers that is was described as characteristically blue-green, bright green discharge. The interesting thing is that the wound itself didn't look at all infected. I guess the dressing (Mepilex Lite) must have wicked it all away from the wound? Still being relatively new to all this, we cleaned the site twice, but bactroban on it, and covered it this time with Mepilex Border Lite. We'll check it daily to keep cleaning it. I read on one site that Pseudomonas is antibiotic resistant, which if that's true is a drag. We'll be starting to add vinegar to subsequent baths to upgrade the cleansing campaign.

On the Transplant Front, we are officially beginning Bell's "work up" on Monday June 14 in Minneapolis, MN. It will be about two weeks of consults and tests, and then Bella would be admitted to the BMT Unit approximately on June 28. Ali will have her stem cells harvested around July 5th or so. Of course, these dates are approximate, but we are full steam ahead go for the 14th. Ang, Bella, and I will return to MN later this month to finalize lodging, then I'll drive the minivan packed the week prior to the 14th and Grandma and the girls will fly up that weekend. My goal is to have us unpacked and moved into wherever we end up by the time they arrive for the smoothest transition for everyone. I'm really looking forward to driving to MN alone! The last long distance trip I took alone was from CT to AZ in 1995 and it was the quietest 7 days of my life. I felt like I stepped off the planet for a week and just hung out with God. I didn't hurt that I had no radio in my car. We'll see if I choose to crack out on a bunch of books on CD or go for the monastical journey again. Which do YOU think it'll be?

How come I don't get to collect Easter Eggs???

Can I just also share my fears with you real quick? These are things you can pray for as we prepare for this journey. I know that these are just my own fears, but they linger and fester, so I would like to turn them over to you collectively to pray for. Thanks! I worry about Bella and how she wrestles so violently in bed when falling asleep. How's that gonna go with a Hickman line in her chest? I worry about Ang having to focus on her job in a new city each day while her baby is going through such an ordeal, and how much that will weigh on her. I worry about how we will keep Ali happy given I'll be in the hospital room 24/7 and Ang will be working full time. I worry about how I am going to keep my sanity in that hospital room for 50 days straight on little to no rest daily.

Thanks for taking those off my shoulders. I am reminded that this has always been beyond my control, and all of these fears are from me wanting to know how it's all gonna turn out before it happens. I am reminded of the quote, "God is in the results business." I just love trying to take back control over the outcome of everything in my world. Oh, man, that is mentally exhausting, though. Thanks.

I have to take a minute to publicly gush about Ali. Ang was away on biz this past week, and in the past, Ali would seize the opportunity to really out me through the ringer while mommy was away. Well, whatever it was, she has currently gotten it out of her system, and has just been an ANGEL with with Bella and me. I think I gushed about Ali last post, too, come to think of it. She's just been amazing.

Okay, outta here for now. Please go read about our new partner, MUSIC TO HEAL. They are very inspiring, especially because the founder is just starting his third year in med school! Get to know them. They rock. I am just so inspired by both these guys and PUCK as well, and thrilled to be making a difference in the world with them, albeit small here in the beginning. At least we're doing SOMETHING.

Happy Easter to you all and good night.