Tuesday, May 18, 2010

a whole lotta STUFF

I tried it again, and it finally worked, so feel free to ignore the ranting of the post below. (Although you should read it as it contains some very exciting yogurt news... I know, I know. Can you even stand it???)

I wrote a very detailed post on the actual "how to" of dressing change last April. You can see it here if you are interested. I went back and read it just now and it BLEW MY MIND. Not much has changed as far as WHAT we do, but there were several things that really struck me. One - I cannot believe how tiny Jonah was, how few supplies it took to bandage him, and how HUGE that FuzziBunz looked on him. Crazy. Two - I cannot believe how many new blisters he was getting on his feet and other places those days, and it just amazes me how now he only seems to blister (most of the time) on his hands, toes, face, and the occasional place on his torso. He has come so far. Three - I cannot believe how scared and timid and ignorant I felt then. I feel so much more confident now. Amazing the difference a year has made. And four - I am still in awe of how much healing has taken place and how much God has done in Jonah's life since he was born and even since last April. The leg that I mention in that post - the one I say will probably always be discolored - looks completely normal now. His only scars are from his biopsy sites. He is an unbelievable healer. His blisters are so much more under control now than they were then - some of that is because we know so much more about how to better protect him now, but a lot of it is ... well, he's just better now.

This post is just to show you how much STUFF is involved with caring for an EB baby. Keep in mind, there are additional supplies to care for g-tubes and trachs, but these are JUST the bandaging materials. Most of you know (as you'll see in last year's post) that we didn't have anywhere to do bandage changes when we first came home from the hospital. So our church, the blessing that they are, finished our unfinished basement, gave us LOTS of storage space, decorated it all purty like, and put in a counter and sink so we would have a designated area (NOT on our dining room table) to care for Jonah. We are forever grateful. Seriously, I don't know what we'd do without it.

Here is our closet fully stocked for the month. I always get a little extra though, so this may be about 40 days worth.

The top shelf is where we keep the boxes of excess stuff that refills the bins on the lower shelves. On the left is Transfer, the bottom layer dressing. On the right is Conco roll gauze, which is the second layer. It is softer than Kendall or other roll gauze, but it's essentially the same thing. The second shelf holds our sterile gauze, Polysporin, Desistin, Alcohol Swabs, and Aquaphor... lots and lots of Aquaphor.

The third shelf holds our drawers with needles, sterile gauze, tongue depressors, and suture kits. That middle drawer holds Vaseline gauze (which we don't really use anymore), Tubifast (the outer layer bandaging that looks like sleeves), and the Conco.

The fourth shelf holds Chux Pads, and all our different sizes of Transfer and also some Lite (another bottom layer dressing). The shelf below that holds boxes of gloves, alcohol sanitizer, rolls of uncut Tubifast, and... I'm not sure what that is. Probably a random box of extras.

The bottom "shelf" holds all our extras. Baby wash, saline water, some Pedialyte, antibacterial wipes, eye lubricant, and lots of different sample dressing materials that I've been sent by other EB folks (and some I've ordered) over time.

Every night we go downstairs, usually right after dinner, and set up for the next morning's dressing change. Here is what it looks like before we cut all the supplies. I order big sheets and then just cut the size pieces I need.

Matt cleans the counter, all the tubs and tubes of ointments, scissors and tweezers. He also sets up the TV trays with the towels, Chux Pads, and washing materials. He takes out the trash and puts the clean sheets and blankets on the actual dressing table where Jonah lies. I cut all the Transfer pieces, and lay everything out in the right order.
Here's what it looks like all cut and ready (except for the Vaseline gauze... these photos are from March).

And here's the final set-up. CHECK OUT OUR AWESOME TABLE. My dad made this table for Jonah. It's so sturdy that it survived sliding off the back of his truck at 70 mph going down the highway (but that's a whole other story for another day).

See this lock?

Oh yes, Friends. There is more to this table than first meets the eye. It comes complete with Lazy Susan rotating technology. Jonah thinks it's a trip. Not to be confused with Tripp, who is adorable.

And here's everything from a different angle. You can see the TV trays with all the towels and bath stuff. We leave him bandaged and only bathe is head, face, and torso in the tub. His limbs are done one by one - take off bandages, wash limb, replace bandages on that one limb, then move on to the next.
And this is the angle when you first get down the stairs.
Every day, without fail, this is what we do. Bath and dressing change take about two hours (depending on the state of his skin and how much blister popping I have to do AND on how much he does or does not cooperate).

And this is what it looks like when we travel. This is at the lake condo, on the dining room table.

I'm not complaining. It's really not as bad as you'd think, and it's just part of our normal now. But it does make it hard to travel. He's 100% worth it, and the love and commitment we have for and to him is even greater than when I made that post last year. It just grows. Kind of like his body... HOLY COW... can you imagine what it's going to take to bandage him when he's 15? We'll take our miracle long before then, thankyouverymuch. :)

So anyway, I guess one point I want to make is this - when you are praying for all these EB kids, please pray specifically for the ones who don't have insurance or were refused by insurance because of their condition. Medicaid does not cover bandaging supplies. And even some insurance companies will not cover them. RIDICULOUS. We are beyond blessed, but so many others are not as lucky. That's why donating to DebRA is so awesome. Not only does the money go to finding a cure, a portion goes to providing financial and material support for families who are struggling to foot the $3,000 to $8,000 a month cost for supplies.

As always, thank you so much for praying.


The Boob Nazi said...

Wow! I work with patients who have trachs, but I had no idea there was so much involved!

Devon said...

wow, you are even more amazing then i originally thought!

i'm a babyloss mama myself and some days just the "normal" stuff gets overwhelming...i honestly cant imagine how you must feel some days. so glad though that you have that sweet boy smiling back at you!

EB parents/kids are amazing!

thank you for sharing!

Just Diane said...

Wowow, Patrice. That really is a WHOLE LOTTA stuff. Thank you for sharing your life, Jonahs life... your whole family. I think I want to adopt you all.

Our life is a bowl of Barry's said...

Although I don't like the fact that you have to do this for Jonah everyday, I really liked this post! You go through so much on a daily basis... and it was good to see exactly HOW much! Thank you for the 'tour'!

Kim M said...

Oh, how I love to hear you talk about Jonah's future. It seems there was a time we wondered if he would have a future and look at you guys!!! Jonah's life is oh so much better because of you. God had a plan, and he needed you and Matt to acomplish it for Jonah.

Keep up the incredible work - I know you go through so much so Jonah's life can be oh so much better!

I'm excited to see him start to crawl -

God has brought all of you so far!

The Oxford Family said...

I never, ever thought about what a production just bathing would be! You are both amazing committed parents!

Toni :O) said...

Whoa...You continue to amaze me and it just goes to show what astounding parents you are. Sweet Jonut is so lucky to have you taking such good care of him and what a blessing for insurance, my gosh...makes me sad to think others are going through this same thing as you without assistance, I just cannot imagine. Thanks for showing us into your side of the world and making us each take a step back and be grateful for all we have. Always thinking of and praying for you!

Ani said...

OMW - and I'm sure that even with your detailed post I cannot begin to grasp the amount of work dressing change and bath requires! You guys rock - you are such awesome parents and Jonut is such an awesome kid!

ps - Never again will I complain about bath time or packing for travel with my 2 kids :-)

A pair and a spare said...

It is astounding to me how organized you are. Well, I suppose you have to be! Without a doubt, God hooked Jonah up with the best parents ever.

Linda said...

you are an amazing strong woman.
May Gods' love continue to surround you and the Blessed Mother embrace you and give you continued strength.
Sometimes I find the "normal" mom stuff overwhelming, and here you are, giving so much to your family and blessing them everyday.
You are simply amazing!
Thanks for sharing!

Janis said...

Wow! There is so much involved! Jonah is one lucky little guy to have you for his mama!!! He is just adorable!

Love it that your reflection is in the wall mirror!!!

Thank you for sharing!

Wanda Wilkinson said...

WOW I just went back & read the post you did 4/09--Jonah has definitely grown. God has answered so many many of our prayers. Just makes me know that I am right in believing God is going to heal Jonah.

Jonah is so amazing, he just captures your heart with his smiles & those eyes. God has a wonderful plan in line for Jonah--he is has been having an impact on people since he was born.

I hate that I did not get to see your basement nor Gabe's garden when I stopped by--I must put that on my list for my next visit. I was too caught up in spending time with you & Jonah.

I truly love each of you. God blesses me so much through your lives that you share with all of us.

Hope you are having a great day & I hope the sun is shining..real dreary her in CH.

Love & prayers as always

Laura A said...

That is AMAZING. Even more amazing is how God has protected Jonah - he looks wonderful these days!

That table is something else - genius, I tell you!

Thanks again for the reminder that EB is not just a "random blister" thing, and for all that EB patients and their caregivers go through daily.

Hope the rest of your week is great!


Melissa said...

What an eye-opening post. EB parents are amazing and you are such a strong advocate for all of them. Many prayers for you and Jonah, who I must say gets cuter everyday! Who knew it was possible! : )

Becca said...

Awesome post, thankyou for that.

Wanted to say though - just in case that miracle takes its sweet time in coming - that when Jonah is a big guy of 15, he should/could be working through dressing change with an aide, if at all possible. It's hard to say where the cut-off point is but when a young person might or will need support from others into adulthood, they need to start learning about working with and giving direction to an aide, and not just have mum and dad take care of everything. It's a critically important skill for adult life that we (by which I mean people with ongoing additional support needs) need to have developed along with everything else that happens as part of growing up. You know. Just in case that miracle gets held up en route.

Jennifer said...

Amazing! Both the whole dressing change and the growing a whole year thing! He is amazing and his parents are as well! BUT!!!!! I just GOTTA hear the story about the table and going 70mph! I think I might have some similiar stories to share with you! Jennifer of Southeast, NC

Katie said...

Holy Crap. I thought you were a fantastically amazing Mama before this , but now there is no doubt in my mind!

God knew what he was doing when he gave you such a special baby, its is amazing to see how well you take care of him and ALL his needs. While I'd like tot hink that I could do it, I know I there is NO WAY I could be as organized, thoughtful, and amazing as you! You are such an inspiration!

Sincerely, Stephnie said...

Your such a good momma. God knew exactly what he was doing when he gave Jonah to you and Matt. Your personality is awesome nad I love reading your blog.

Your Friend (That you never met,
Stephnie in CA.

Nene said...

I am at a loss for words. Jonah is truly a miracle! The love and care you give him is amazing. You make me want to be a better mother, Patrice. Your example, your words...I am so inspired by you. And Jonah is just too cute for words!

Deanna said...

Wow...just, wow. Two hours' worth of bandaging every evening is hard to imagine. I know it's become almost second nature to you guys, but still...it's so easy to see why you're just overwhelmed sometimes. Thanks for sharing your story with all of us. You are a real inspiration!!