There are a few important thing for us to take into account in Ethan’s daily care, any small amount of friction on his skin will cause the poorly joint skin to split resulting in a blister, any blister that do form need to be popped immediately to prevent spreading. Any adhesives stuck to the skin will result in the tearing of skin off the tissue, neglecting the spread of bacteria will cause infection, malnutrition leads to slow development and a weakened immune system. Ethan only ever briefly wears clothes for special occasions. Just long enough to snap a photo in our effort to create some type of memories. Even then, he has four layers of gauzes on his skin that range inside to out from lathered in a thick layer of Aquaphor (the main healing ointment for his skin) to a relatively dry exterior. The layer that makes contact with the raw skin is an Aquaphor coated strip of either Mepitel or Mepilex. Gauzes of this material are priced at about $7.70 for one sheet of 3×4 inches. but are essential in ensuring that the skin will not be ripped off the tissue when removing a gauze that has dried out of Aquaphor. The second layer is a heavily coated strip of Vaseline Gauze. The third layer is a moderately coated layer of cotton cause. The fourth layer is a Aquaphor insulated tubular netting gauze that holds the structure of the other gauzes into place. We invest a significant amount of time on wrapping his hands to strive to keep their full dexterity. Roughly two hours of preparation and one hour administering the gauzes. Strips of vaseline gauze are placed in between each finger to prevent any joining of he fingers. Each finger is then wrapped individually with all 3 layers of gauzes and lightly pulled toward the back of the hand the secured with the gauze in an upright extended position to retain full mobility in the fingers. Ethan is kept on specially prepared diapers that have all elastic removed and are layered with a thick coat of Aquaphor. Ethan is then placed on a specially prepared 23×23 in. blue medical chuck moderately layered with Aquaphor. Ethan’s exposed skin is covered in Aquaphor, more so in raw areas. Finally, Ethan is swaddled in a 100% cotton baby blanket. To prevent the spread of bacteria, we remain in our home as much as possible with an extremely limited number of visitors. Sterile needles are used to pop blisters. All surfaces are constantly disinfected. Scissors and other supplies are constantly disinfected. Gloves are used and disposed of after removing the gauze off of each extremity. Gloves are used and disposed of after every diaper change. Cetaphil cleanser is used in every diaper change. If a gauze is tainted by a small amount bodily fluids or stool than it is replaced. New gloves are always used when placing Aquaphor directly on his skin. Ethan uses a Dr. Brown Bottle with a special blue valve that allows formula to come out with just a light touch of the nipple. Even his bottle’s nipple need to be lightly coated with Aquaphor. At day’s end Ethan will have utilized three and a half 14g Aquaphor tubs ($56), two 3×4 Mepitel sheets ($15.40), 10 medical blue chucks ($1.50), vaseline, cotton and tubular netting gauzes ($5.00 after insurance coverage). His medical supplies are roughly $77.90 a day and over 2,300 in a month. Our finantial inability to buy Aquaphor online in bulk has lead us to clean out every Target and Walmart of 14g tubs of Aquaphor in the city of Stockton Ca. Last night I had to empty out the Target in Lodi Ca. We are desperate to raise the funds to buy a decent amount of medical supplies before our savings are exhausted to their entirety. If you are interested in watching our strategies in maintaining Ethan’s skin I would like to inform you that I will be posting videos on how we bandage his hands and legs on Saturday. I will also be posting videos on how we prepare his diapers and medical blue chucks.
10 thoughts on “A Day of Ethan’s Care”
Hi from an EB mom in Alabama. Ethan is gorgeous. He seems to be doing well. My daughter, Abby, is almost 8 with rdeb. Maybe someone has already mentioned it but Eucerine will send eb families 3 cases of Aquaphor a month. Just call and ask for it. I know how much you can go thru and it’s terribly expensive. Keep up the good work and if you have questions or just need to vent. I’m here and so are the other families dealing with eb. We are a big family that does our best to help and encourage. Gentle hugs to Ethan.
my heart aches to read this, i wish i was financially stable to donate for
tgis handsome baby boy . May god wrap arms around him and heal his condition. i will share this story to help raise money . god bless him and his family more importantly his mother .
God bless you for all you are doing right now and how much your heart hurts for your sweet baby. Our daughter Jordan had JEB-H, and we are praying for you every day.
I cant imagine what your family is going through, but you all will constantly be in my prayer. I am sharing this blog and i located your Facebook, so i have shared that also to get the word out!
Hi. I shared your story on my business page on instagram. I have a community of moms as followers and I’m sure many of them will help with donations. I would like to tag tour instagram account if possible. Buy I wanted to make sure you were okay with that first . Please let me know. Prayers for your family and that beautiful baby boy! 💕
Of course! ☺️ thank you so much
Please check out this website. Maybe you can get free cream.
I’ve also shared your blog with Aquaphor Facebook page. Hopefully they will contact you soon.
Prayers for your entire family.
Thinking and praying for you. You are two incredible angels caring for your little guy. I made a small donation, I’m sorry I can’t give more. I also shared your site in hopes others can help too. I wrote the Ellen show to see if they could help, and planning on sharing with a few others. Hang in there and your family will be in our thoughts and prayers.
My heart goes out to you and baby Ethan . I have shared your story and to ask for prayer for Ethan. I believe in a GOD who will touch Ethan and make him whole. I will keep his name lifted in prayer daily. My you feel GOD’S love and peace. Dear Lord Jesus Lord Jesus said by your stripes we are healed , ask and it shall be given. Lord I stand on your word Lord coming before you Jesus praying like that you will touch Ethan’s body Lord that you will touch him from the top of his head to the bottom of his feet Lord. Im standing in faith thay you will heal him Lord. Lord that you will give him peace anf take away the pain and you dear God will make him whole God like you created him before he wad even created. Lord Jesud touch his parents give them strength Lord and the faith to carry on each day Lord th is a heavy burden upon their heart Lord I asked you soften it Jesus that you take the load off of them Lord amd continue to work in Ethan’s body Lord Le with his mommy and daddy Lord keep them safe give the daily strength keep them in your arms dear Jesus I lift them up Lord to you Jesus and pray they will feel your love anf arms atpund them and strength them Lord each day. Help them hold onto the promise knowing you are a miracle worker God and that you will make their baby healthy once again Jesus Lord I thank you for what you’re doing and I give you all the praise and glory Jesus you are the mighty miracle worker Jesus in your holy precious name Lord in Jesus name in Jesus precious name hallelujah thank you Lord in Jesus Amen.
Got a response from Beiersdorf who make Aquaphor. They will help but they need to hear from you directly. Here is the message I received.
Hi Lydia – Thank you for sharing Ethan’s story. Our thoughts are with him and his family. Because of privacy laws, we need to work directly with the families and medical providers. Please have Ethans’s parents contact us directly at 1-800-227-4703 or firstname.lastname@example.org.