Tuesday, April 27, 2010

what i've been up to...

This is what I've been doing today -

General Instructions –
Do not use Latex gloves.
Lubricate gloves with Aquaphor or similar lubricant.
Vitals need to be taken over bandages or wrap Transfer (T) or Conco (roll gauze) over his arm first.
Do not rub him when picking him up. Do not pick him up under his arms. Scoop him up instead.
Move him by lifting, NOT SLIDING.
Do not rub alcohol (or anything else) on his skin. Dab lightly instead.
Pad the table. (egg crate or sheepskin?)
Lubricate anything that will come into contact with his skin.
Heavily lubricate his eyes.

Pulse Ox –
1. For VELCRO kind – wrap Conco (roll gauze) on digit or place small Transfer strip (T) or square on skin and Velcro over bandaging. If it won’t register and is soft material, may can go straight on his skin – lubricate skin first. Should not rub.
2. For CLIP kind - wrap Conco (roll gauze) or place small square or strip of Transfer (T) around finger/toe first and then clip on.
3. For ADHESIVE kind –
Remove any sticky part.
Lubricate skin or probe.
Place thin Kleenex or Conco on skin.
Place probe on top of Kleenex or Conco.
(Can possibly go directly on skin if it won’t register over Kleenex or Conco.)
Secure with square of Transfer (T) or Lite (L) or Lite Border (LB) or Conco (roll gauze).
Wrap light layer of Conco (roll gauze) and put probe on top. Tape probe down to Conco (NOT skin) or wrap more Conco on top to secure.

IV –
1. DO NOT suture IV unless absolutely necessary.
2. Secure IV after he’s sedated. (LUBRICATE mask well or just hold mask over face, not touching skin.)
3. DO NOT RUB his skin or let catheter touch his skin.
4. After it’s in, wrap Transfer (T) around arm underneath the IV catheter. Use the Mepitac tape (M), Conco (roll guaze) or Tubifast (stretchy tubular cloth) to secure catheter to Transfer.
5. Mepitac Tape (M) -but only Mepitac- can go on his skin if necessary. Please let me remove or remove slowly and carefully. If edges are stuck, use Aquaphor to release.
8. If for some reason you must put tape on his skin, ONLY use the MEPITAC tape I’ve provided.
9. Let me remove any EB safe adhesive from skin. I have special spray that will help remove it.

Leads –
1. Remove adhesive.
2. Lubricate skin where lead will touch skin if lead will still register that way. (ultrasound gel?)
3. Cover with squares of Lite Border (LB), Lite (L) or Transfer (T). (They are EB safe adhesives.)
4. You can also wrap Conco (roll gauze) around his chest over the Transfer if you need more security. DO NOT WRAP TIGHTLY. If they dig into his skin, he will blister.
5. REMOVE GENTLY AND SLOWLY. You can “soak” off bandaging with Aquaphor under edge or with water. Do not pull off quickly or his skin will tear.

After Surgery:
1. Only remove what you have to. If anything is stuck to his skin that can stay on outside of the OR, please let me remove it.
2. Put piece of Lite (L) around the stoma, under button, so tube will not lay directly on his skin.
3. Extubate him before he wakes up. Go slowly and gently.
4. All limbs and torso (as much as possible) need to be rewrapped before he wakes up or his general movement will cause him to blister himself.

Reverse Isolation.
Trash to be left outside, so custodial staff does not enter his room.
OWN vitals equipment, to reduce infection risk.
Low dose steroids to reduce inflammation in airway?
Anti-nausea meds?

I still have to cut and label all the individual bandage pieces and put them in corresponding bags labeled Pulse-Ox, IV, Leads, and Post-Op.

And pack four days of bandaging supplies.

And pack everything else.

Don't be surprised if you don't get a lake post from me until Christmas.

I emailed all this info to the surgeon and anesthesiologist and felt the need to end the email with: "I'm not crazy and overbearing although it may seem like it. :)"

Why do I feel the need to explain or rationalize my control issues?

EMBRACE THE CRAZY, people. Embrace the crazy.


Devon said...

yes, embrace it!

and you aren't crazy...just protecting your son! and who knows him better than you? no one!

i'll be praying for you all!

Meghann said...

You're not crazy - you're an EB Mom and it's what we do.
Within minutes of Leah getting out of her trach surgery I was writing down a list of 'Do-Nots' to post over her crib for the staff to read. I was writing through tears but still writing.

Randi said...

Don't feel bad, every mother I know who has a child with ANY special need always feels like we're being pushy or bossy. We're not, not at all! I have actually had both doctors and nurses thank me for giving them the run down of care, to quote the nurse "you know your child, I may know the disease, but you know your child". We know the best things for them because we care for them day in and day out. Try to think of it like remembering to pack their favorite toy or blanket, you know what your child needs to remain comfortable and happy. You're just doing what every good Mommy would. :)
Our thoughts and prayers are with your family. Stay strong Mommy, and keep smiling for Jonah. :)

Tricia said...

Having a child go into surgery is overwhelming enough, I cannot imagine having to educate the staff who will be working with him. You are a great mom. I am praying that God gives the mdical staff grace to accept that they do not know all they need to know, and wisdom in how to best care for Jonah. I am praying for Jonah that he heal quickly from the surgery and have no negative side effects. For you and Matt that you will be filled with peace and surrounded by the presence of God.

Lisa said...

You are his mother and it is your GOD given right to protect your child... EMBRACE your responsibility and go forward... Prayers are coming your way!!!

Cristin said...

"God is our refuge and strength,
an ever-present help in trouble."
Psalm 46:1

Praying for you! I am a bit of a control freak too, but remember who is ultimately in control. He's with you, Partrice, he's with you. He's also with Jonah. He will not leave Jonah, he just won't. He's the almighty King and for that we have no worries.

Lucy and Ethel said...

The medical profession should be eternally grateful that you are willing and able to provide them with such detailed instructions on the best care for Jonah!!!

If they know what's good for them, they'll post them everywhere by Thursday. EVERYwhere.

Sending prayers from the mountains!


MelHoward said...

I am a completely random reader but decided to comment today! I am a nurse and I must say, I would love having these instructions for patients! I actually am at work and showed this to some of my staff and they all loved it! You have made it so easy to do exactly what is needed for your precious little boy. Some of the staff will probably be so stressed out about hurting him and this will help so much!

Patty said...

You are not crazy....you are Jonut's mommy (who is crazy in love with him). Good Job!!!

Nora Lee said...

Not crazy at all! I have been praying all day for Jonah, and you and Matt preparing for the surgery. You have said before if you don't educate them who will? Right!

Your a great mommy. Will continue to pray for a successful surgery and for a healthier happy Jonah as a result.

Unknown said...

You are not crazy - I know it feels like it! - you are a great mom!

Praying that all goes smoothly with the surgery and all of those hands will be guided by God...and, of course, your instructions as well! You are doing a great job and I look forward to hearing great news soon.

Jen Burns said...

You are NOT crazy, you are Jonah's Mommy doing anything and everything you can for him. I applaud your commitment.

Heather Allen said...

Girl, You gotta do what you gotta do!

RLR said...

You've got to do that! Jonah's not old enough to tell them what to do - yet! Praying that all goes smoothly, and that you feel peace and strength through the hospital stay.

Tiffany Lockette said...

I have followed your blog for a long time but I rarely comment. I want you to know today though that I think you are such a wonderful Mommy and I dare you to think anything less. I am praying for Mr. Jonah that his surgery goes smoothly with no complications and positive results in the end. Praying, Praying, Praying.

megan said...

not crazy...just a really good mom. praying all goes well. :)

Toni :O) said...

OMG...so praying for you all...when I read his skin will tear..it broke my heart...just broke it. You are an amazing, amazing mother and I'm SO glad he has you to protect him because really...you DO know him best!

Brianna said...

You are not crazy just well educated and love your son. I would probably be even worse if it was my son going in. You know him best. Even though those doctors are educated they don't deal with your son day in and day out like you do so I'm sure it will help them too.

Anonymous said...

You're so not crazy. I'm guessing you already made your bid to be in the OR when he goes under and again when he wakes up and they put the brakes on that, 'cause that's totally what I'd be trying ;)

Anonymous said...

Just another mom here to say, honey, you've got it right. If these directions upset anybody, then don't let them care for Jonah.

You are his voice, his advocate, his mother and you probably know more about the disease than these particular doctors and nurses do.

You aren't crazy, you aren't obsessive, and you aren't a raging control freak. You are a mom, Jonah's mom. You will keep him safe in anyway that you can, and this is one way to keep him safe.

Erin said...

Jonah is so blessed to have you as a mom and as an advocate!

Gilda said...

I have to agree with everyone posting a comment today. Your instructions are a perfect of example of how well you take of Jonah and his needs. Keeping you and Matt and of course little Jonah in my prayers.

Melissa said...

Consider yourself embraced!
I was even thinking more bold and italics should be used. Really. :) I am so that way.
Praying for y'all!!
My son Tracen loooves looking at pic of Jonah. He always asks to see that cute boy on the computer and about what's going on with him!

Precious 3 said...

WOW. It is hard enough to deal with a child's surgery, but WOW. You are doing and AWESOME job! I pray the doctors and staff will have all the wisdom and guidance they need during this surgery. I'm praying for protection over Jonah. I'm praying for peace, energy, and guidance for you and Matt during the surgery and recovery time.

Just Diane said...

Moms know best! Take care, Patrice. My prayers are always with you and your family! Your list is yet another reminder of what a fantastic mom you are!

Island Jack's Travel said...

I don't think you are crazy or overbearing at all! I used to make similar type lists all the time for people who were taking care of our kids. I drove the doctors crazy and even blessed one out one time because he wasn't showing enough concern over my daughter's symptoms .... and this was just over an allergy to a medication. If my kid's had had a serious disorder I would have probably disappeared through spontaneous combustion!

You are normal my dear!

Love, Janet

Libby said...

I can not even imagine...you are definitely not crazy, you are responsible!

Cristi said...

You are not crazy just a great mom who knows what her baby needs more than doctors and especially nurses do. I would have copies of that with me to hand out to every nurse that came in. LOL Good job mom.

Katie said...

I'll be the voice of dissent and say you ARE crazy and a control freak. But that has nothing to do with this list.

Rebecca said...

Prayers coming your way!

Brenda is SO Blessed said...

you are all in my prayers... i was just telling someone at work about Jonah today and asking for their prayers as well

Jamie Fenley said...

Whew! Patrice, I would hope they would figure this one out, but make sure also with the IV they don't use a tourniquet.

Blessings to you, you (and Jonah and Matt) can do it!

Anonymous said...

Wow--my first reaction was 'how did she think fo all that?'

Way to go--I think you're covered really well! Is there a way that you could help them with some of this? Or would that not work? I'm just thinking it would be so much more efficient--it will take them so long and you could do it so well.

Mommyto3 said...

Not crazy, the preparedness. Matt & you are doing a great job, and it shows everyday with Jonah. Here & ready to bring the goodies, oh yes I mean sweet tea.

Jennifer Strosnider said...

see, and i feel crazy for my detailed packing list for our trip to nashville for five days.
You. Are. My. Hero.
will be praying all goes well. xo

kedw said...

your not crazy!!! your a mom and a great mom!!!! thinking of you this week!!

Hetrick family said...

If I were Jonah's nurses I would be SO APPRECIATIVE of all that you have done. EB is so rare and I GUARANTEE you are providing them with invaluable education. You are for sure helping future EB patients with this list!! WAY TO GO MAMA!!!!

Carson's Mom said...

Hi Patrice,
Glad I'm not the only crazy paranoid EB mom...lol. We are lifting you in our prayers here in Cincy for this weeks proceedure. Only EB families know the stress that lies on us for these types of things. God Bless you guys and little Jonah.
If it is not asking too much, it would be awesome if you could promote our walk on your blog for this weekend. In the past two years we raised $43,000 for EB research we are hoping to add lots to that this year. We need our miracle. Here is the article from our Hometown section in the paper.


If you dont' get around to it, I completely understand...us moms are a wee bit busy.

Jennifer said...

You are definitely not crazy or controling. You are caring and educating! You are one incredible mama! I am praying and praying for him, you and will start NOW on praying for the people he will come in contact with (and hopefully some he won't--custodians!). Love to you all! Jennifer in Southeast, NC

Bekti said...

if the situation allows you, i think it's a good idea to pray together with the medical staff before the surgery begins.
I pray for you all!

Anonymous said...

Embrace the crazy and know that you are NOT crazy! :) You are a caring and rightly cautious Mama Bear.
As I was reading through your list of instructions, I couldn't help but think also of the EB families that have gone before yours... I thank God that they surround you and Matt with such hard-fought knowledge and painstakingly clear directions for the medical staff who will have the honor and task of learning so much from such a beautiful little boy.
Praying for ALL involved!!!

Laura A said...


I'm once again completely amazed at your mad mommy-ing skills! :)

Seriously, I had concoted in my mind that I was going to find a way to put together an EB kit for you to take to surgery. Silly me. I would have 1) mislabeled everything, 2) gotten the wrong supplies, 3) messed it all up in general. I'm good at organizing many things, but it's clear you are WAY better!

So I decided to do something else for you, the foremost being praying without ceasing. Team Anderson is praying 1) for Jonah to come through this successfully and with no damage, 2) for you and Matt to have clarity and strength as you tell the medical staff what Jonah needs, 3) for the medical staff to be open to your directions, and 4) for the medical team to perform the surgery accurately and gently.

...oh, and there may be a CFA gift card coming to you shortly. I can't rightly say...

Please hug sweet Jonah from his team in TX!


Alison said...

We will be praying that whoever needs to follow those instructions does so to the very letter. If they don't, they will probably hearing from all Jonah's fans!

We love Jonah! Therefore, nurses, doctors, etc, pay attention! Don't harm the keeper of those beautiful blue eyes and winning smile!

Unknown said...

You are the expert--Jonah's specialist. You know him and his care better than anyone. You are so right to prepare this for the hospital staff. They should allow you to be in surgery with him to oversee.

Sarah Joy said...

Wow. I am an RN, and I'm actually our skin care/wound care specialist at my facility. And I must say ... I would LOVE having this on a patient like Jonah. It's something our floor RN's wouldn't have any experience with, and we would want to treat him the correct way - and be able to protect him when we take care of him.

So no, I don't think you're crazy. At all. You are being an advocate for your child. I applaud you.

Prayers for surgery.

dragonflyz in June said...

Oh how boring life would be without the crazy!! Embrace it with all you have!!

I am impressed with all you have done in preparation, and I think that there is more likely to be something strange if you did not do it. I already do those types of things and I have no reason like yours. God knew what he was doing when he picked you and Matt to be little Jonah's mom. You are awesome! As hard as it is to handle at times, you are what is making his life as normal as possible! You are my hero girl!

Peace & Blessings

kim_brough said...

While I don't work with kids, I am a nurse and if I had a patient who had an obscur-ish disease in which there were very specific ways to care for them, I'd want to know from the people who took care him and know best. Don't worry about it, as long as you're nice to them!

Lari said...

Thinking about you today. You're doing such a great job w/ Jonah.

elizabeth said...

I have never posted before but have followed Jonah's story for a long time. Reading this breaks my heart :( As a mother myself, I can only feel your love through these instructions though. I know it is hard to let others care for your baby....so it MUST be 1000000 X more difficult for you!

I think you did very well with the instructions. Johan and Gabe are so blessed to have such a wonderful Mommy and Daddy :)

I will most certainly be praying for Jonah and your family in these next few days....as always :)

Good luck Jonah!!

Love Elizabeth

Ani said...

Oh Patrice - you are just a mom who adores her son and wants to protect him!!!! I am praying for Jonah and the rest of his family :)

Anonymous said...

embrace it patrice!!!! and go crazy on them if you see anyone NOT following your instructions!

Amber said...

You are such an amazing woman and mother, Patrice! Everything is going to go fantastic. You have quite the army of Prayer Warriors standing for Jonah and your family!

R said...

You're doing it all exactly right, Patrice.

Consider contacting the paediatric burns unit for additional bandaging supplies and/or pain management help if you run into difficulty.

My PEG (g-tube) is just about a year old now. Best thing I could have done, I was spending soooo much time and energy before from trying to keep myself hydrated.

Some things that Jonah might experience:
Straight after surgery it's only moderately painful - suspect he's had many skin wounds that hurt more.
Because your stomach reacts to the trauma a little by swelling somewhat you can feel as if you're quite full even when stomach is actually empty, so he might not be very keen to eat right after.
The first few feeds don't hurt but they do feel *weird*. He might not like the strange sensation but by about day 4 or 5 you totally get used to it.
The incision will be kinda gungy for a bit after surgery. The gunge is a good sign, it's full of white blood cells and will help protect him from infection.
Longer term, once the incision has healed, PEGs are amazingly good at self-cleaning and lubricating, they secrete a clear/white gungy stuff in small quantities, kinda like how a healthy nose or ear (or vagina!) does.
If it gets dry round the PEG (usually from over-cleaning), friction from movement of the tube can be a bit painful. A drop of KY or other thin lubricant fixes that straight away.
The normal secretions that I mentioned above look really crusty and gross when they dry out. They soak right off and you will see bits you hadn't even noticed, floating away from Jonah in the bath.

I don't have EB but experience a milder version of some of the fragile skin issues along with severe physical impairment.

All the very best for Jonah's surgery, I hope it goes smoothly.

beanst27 said...

Patrice, you are an amazing person and mother! I say a prayer for Jonah everyday, but today I am sending up extra prayers.

Mrs. Sierra said...

You are an amazing woman, and an even more amazing mom. Jonah is so blessed to have you and Matt. We will be thinking about you and praying for you tomorrow.

Lori said...

It sounds like you are such an awesome mom, not a crazy mom. Sending lots of good thoughts and prayers.

Unknown said...

Your not crazy! Just taking care of your baby and making sure other people take just as good care of him.

Praying for you guys!

Amy's World said...

girl you are not crazy you are far from it!! you are a mother who is protecting your son who wants the best care possible for him. You and Matt are wonderful parents!! I will be praying hard for the surgery to be a success!!! lots of love and prayers your way

I also posted prayers for Jonah on my blog hope it was ok

Rachelle said...

Hi Patrice. Just want you to know that we prayed for you, Matt, Jonah, the surgeons, the hospital staff and everyone else involved tomorrow, and will be praying.

You are not crazy, you are doing a fantastic job of taking care of your sweet baby. Keep it up and don't let anyone at the hospital intimidate you. Moms ALWAYS know their babes...you will do a great job of educating the staff. God will be with you and give you strength.