Sunday, September 27, 2009

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!


Tim and Ang


  1. I know a g-tube is a HUGE step, but it would make many things much easier! We did not get one for my daughter and that was my biggest regret! It would have made life so much easier! Also, if you are still considering the bone marrow transplant at some point, she'll mostly likely need one before that especially if she is still an infant/toddler. Not saying you need to get it during this hospital stay (cause you'd be there for another week or so) but something defiantly to consider, and I know other EB parents would echo me on how wonderful those things can be!

  2. Hey Tim,

    I saw a few entries back that you were worried about losing people, but James and I have been following your blog as much as we can... we keep your family in our prayers and can't imagine the journey you are on.

    -james moore and kristen pauslen

  3. Hi Tim and Ang, I really hope you can get the G-Tube, it is a life saver and takes so much of the stress away from everything you go through with an EB baby. I cant imagine life without it!! Luke had his placed at 2 1/2 years old after having long episodes of constipation, with the last episode being 9 days without passing anything the day prior to the G-tube placement. He also stopped eating and drinking because he was so backed up. Once he had the g-tube placed it made both of our lives so much better.

    If you guys need anything give me a call. Luke is in school Monday - Friday 8- 2:30, and im free at that time.

    Ive been keeping up with your posts and enjoy reading your family journal.

    Lots of love to your family, Danial

  4. In VBS this summer we called seeing "God in the details" as you put it "God Sightings." May you and your viewers continue to look and admire those God Sightings.