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.

AND

his other mantra is...

Once you fall behind nutritionally w/ EB,

YOU NEVER CATCH UP.

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 EVERYTHING...you 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. ;)

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

Thank you all for your love and generosity.

11 comments:

  1. I think I may have used the word "awesome" too much since Bella was born.
    But that's what it is.
    So happy that you were sent an angel with Joan. She sounds amazing....I hope it all works out there, since the trust and love is already overwhelming.
    I love the pictures, too. I loved seeing those little fingers holding the bottle...and Ali, well, how do you choose what princess to be for Halloween!
    I am "here", as always...and you are still a link on my own blog...

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  2. Very happy to hear the Bella is doing so well.
    Elizabeth

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  3. BTW, I tried posting earlier comment with Google Account but it only let me post as Annonymous.
    Elizabeth

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  4. Just wanted to know that I'm praying for your family! I was a nurse for an EB baby (many years ago) until she passed away at 9 days old. She made a lasting impression on my life and I will never forget her. I'm so proud of you for deciding to put that G-tube in! Great decision!
    Much love,
    Jennifer

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  5. Hi! I am Billy King's (Industrial Billy)stepmom, Billy was telling me about your daughter. Seems like you guys are doing everything right! I sent a link to your blog to a professional blogger requesting her to provide you with advice/assistance in making money off of your blog. I have not heard back from her, here is a link to her blog, maybe she could get with you directly. Her young son has a heart ailment and she would probably love to help you sell your music. Here's her link http://www.mycharmingkids.net/ Best Wishes and continued success! I don't mean to post this as anonymous but I'm having issues posting it. Julie King

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  6. Great to read that news. Get plump, beautiful Bella! We love you guys, hope to see you soon.

    Jim

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  7. You guys have gone with your instincts from the start and look at how awesome Bella is growing! Keep being amazing parents and hang with us positive folks...we are cheering you on!

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  8. Sheila Ringgold MarchettaOctober 16, 2009 at 12:36 AM

    Sheila said...

    This all sounds very hopeful! You and Ang continue to to be amazing in how well you think things through, and plan for the what is best for Bella. You have two delightful daughters, who blossom under your love and care.

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  9. My daughter doesn't have EB, but has multiple other disabilities. Putting her g-tube in was the best decision we ever made! She doesn't take anything by mouth now, but it was such a battle when she did. I didn't have to worry because at the end of each feed, I could just dump in the rest. Plus, it makes administering medications a TON easier! :)

    I hope the situation with the daycare works out. It sounds great for Bella!

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  10. I suck at commenting, but I'm always sending good thoughts your way :)

    -Sarah

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  11. Just wanted to say I think you guys are on the abosolutely perfectly smart path to EB care..I too was criticized for putting in a g-tube with my son at 14 months..he was in the 60th percentile for weight..well, as much as I appreciated their compliments, they were not present for the 90 minute feeds and the crying and struggling to eat a 3 ounce bottle when his mouth hurt..the end result was a plump baby, but what they didn't see was the path to get there and it wasn't fair to him..nutrition IS the key to EB..getting enough food and water is absolutely essential..I do not regret for a moment my decision and my son is happier and healthier for it..we use it to supplement what he can't take in orally ..It's worked like a charm...I admire your family's strength and your daughter is goign to be all the better because of your proactive thinking...best of luck...
    Beth
    Mom to Casey...2 1/2 RDEB
    email anytime..johnbeth91@aol.com

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