Recessive Epidermolysis Bullosa -I need advice

magicpez · Nov 6, 2010

You're doing a great thing. Feel free to ask this same question at Epidermolysis Bullosa Friends where you will receive answers from people dealing specifically with EB.

rninil · Nov 6, 2010

Also check out Debra of America -Dystrophic Epidermolysis Bullosa Research Association The most important thing is to understand the physiology of the disease so no matter what the situation, you can reason out how to keep your patient safe and well cared for.

merlee · Nov 6, 2010

It is an unfortunate fact of life that some of the things we do as nurses may/can cause pain. We do what we can to minimize the pain, but it is impossible to avoid.

We have to realize that what we are doing is for the overall good for the patient. Many times I have heard a patient trying to comfort the nurse - the pt knows that the procedure will be uncomfortable, but it has to be done.

If we all felt guilty after doing a fingerstick, an injection, dressing change, etc., we would be totally overwhelmed.

You are a caring, thoughtful person, and I know you will become proficient at your job.

Best wishes!

magicpez · Nov 6, 2010

You are going to be dealing with what most doctors who have even seen this disorder call the most horrible thing they have experienced. The fact that it never gets better is going to be rough. Stick with it. You are needed so much. You are going to cause damage to your patient in the process of saving them. It's a horrible catch 22. Don't feel guilty. Be confident and strong for your patient and yourself. Your patient is going to scream at you and call you horrible names. Hang in there. You will be spending a lot of quality time with them too. This will be your chance to do more than usual when it comes to loving your patient. I mean really and truly love. Your relationship with a EB Patient will most likely be the deepest you ever have with any patient.

Watch this video

Learn everything you can at the DebRA link above and discuss things with other caregivers and patients at EB Friends (link in my first reply).

You'll do fine. Just remember to dig deep into their heart and plant your love. No matter how much they curse at you during the bandage changes they will adore you at all other times.

NicuGal, MSN, RN · Nov 6, 2010

We have taken care of one child with this, and I am not going to cut corners here...it was the most brutal, heartbreaking, stressful patient any of us in our unit had to deal with ever. There are several different types and each one is different in how they blister and heal and the course of treatment.

wondern, ASN · Nov 6, 2010

Thanks for the very enlightening linkys:bow:, magicpez, and btw, :spnngwlcm::wlcmhnds::hrns&wlcm::hug::redpinkhe

nursesaurus · Nov 6, 2010

thank you so much for the video magicpez

BEANCREW · Nov 7, 2010

I think that you looking for advice about how to care for your patient is remarkable. thank you for that. i am just putting my 2 cents in. hope it helps. all the nurses here are right no matter how carefull you are its bound to happen. i have been taking care of my son who has rdeb for 19 years and i still every now and then hurt him. as for the eyes, well, there really isnt much to be done. i try to keep them lubed and drops during the day but one report i read mentioned it is not totally because they rub there eyes, its the eyes become dry and the eyelid adheres to the eyeball, so when they wake up or open their eye, it pops off causing the eye to tear. my son does have scars on the underside of his eye and many on the eye itself, so the theroy rings true to me. again, i got this email because i am on google alert for anything E.B.. i didnt mean to intrude on your rn page but i just wanted to give you some ideas and mostly, say thank you for being a nurse that is not only willing to take this on daily, but wanting to do the best you can. amy

magicpez · Nov 7, 2010

I should add too I stumbled upon this thread via Google Alerts for EB. I am not a nurse. I am involved with many EB Patients online and have worked with a few in person. I will be living with a severe RDEB patient in about a month too.

I thank you too for wanting to learn more about this rare condition and being willing to take on the task. We need more like you! Too many in the medical field run the other direction when they see an EB Patient.

BittyBabyGrower, MSN, RN · Nov 7, 2010

I've taken care of one baby with this. It was the hardest thing I have ever had to do. This baby had the lethal type....she blistered everywhere, her mouth, throat, GI tract, GU tract were all blistered We made her as comfortable as we could, but it was one of the worst things I have ever, ever witnessed in all the years I have been a nurse

Good luck with your care on this baby.

NurseLisa64 · Nov 8, 2010

thank you all for the information! :)

i have the interview on friday nov. 12th. the previous one was cancelled because of appointments ect.,which i totally understand and told her mom. her mom must be run ragged dealing with the eb and being a teacher and having other children!

i do have to admit that i am still wondering if i can handle doing this. :confused:

i get attached easily as i said before, (sometimes i see that as a fault).

i appreciate the videos magicpez! :yeah:

i applied for a npi number so i will be a bit prepared even though i wasn't sure if i need one. i'm sure i will though.any info there will be a help also.

i am excited about this job also because i love to help people and am caring.i also love challenges(which sounds as this will be the ultimate one.)

please keep posting any information- so far you all have been a help just from the encourgement you have provided to me. it's always nice to have that in the nursing field!

even if you aren't a nurse and have posted i appreciate your advice. i find that the patient and the patient can be the best source of information.