Although all of the strict precautions we follow seem to have slowed down the process of blisters forming on Ethan’s skin, only a few blisters show a significant improvement. The blisters that he was born with on his buttocks increased in size and are still raw. Blisters that were showing improvement, have started to bleed again. It concerns me that the rate of blisters healing is slower than the rate of blisters forming. Just last night we had to pop a blister on the side of his knee before it became any larger. Ethan constantly maintains a light fever between 99°F and 100.2°F because his immune system is constantly working to fight infection. His body uses a lot of energy trying to heal so we need to give him Multi-vitamins and higher calorie formula. He struggles to gain weight because it is painful for him to eat. He bleeds from blisters that have formed on his gums. His hunger is usually superseded by exhaustion, even with breaks, while he feeds. His breathing complications start almost immediately after starting to feed. His chest expands forcefully and rapidly for his lungs to receive oxygen. He usually tires out with less than an ounce of formula and then we squeeze formula into his mouth for him to swallow. Lately he doesn’t cry much because it causes him to cough uncontrollably. He only cries when his pain is too much to handle. He only sleeps for short periods of time because thick phlegm builds up in his throat and he wakes up choking on them. Occasionally it is a mixture of phlegm and blood that we suction out of the back of his mouth. We are not sure the extent of the depreciation of his internal health but there are signs that the EB has spread to his digestive track. He gets extremely agitated even when just passing gas. He throws his head back and turns his head from side to side fanatically, kicking and throwing his hands all about. We will be exploring other options for treating his disease Hertlitz Junctional Epidermolysis Bullosa (H-JEB). Despite our best efforts to maintain his condition, his disease shows to be life threatening. Our new objective is to not only maintain his condition as best as possible but also raise enough money to allow Ethan to under go a bone marrow transplant that will give him a chance at life. As Ethan’s parents we do not have the financial ability to bless Ethan with this life saving operation. We can only hope that with the joined financial support of our community, we will be able to expand both Ethan’s Life and his lively hood.
2 thoughts on “Ethan’s Current Health Condition”
I am Reid Underwood’s Nana, I know Brian & Audra have reached out to you, my heart breaks for your family because I do know what you are going through, my prayers are with you and your son.
God made our decision so easy to go through with the bone marrow transplant and insurance has co-operated and so many people have helped in the community, we have been so blessed.
I have been touched by your story. I’m so sorry to see such a precious baby go through such pain, and also his parents! I knew a family when I was growing up that lost 2 babies to this disease. Here is a link to her blog http://heatherearljoyinthejourney.blogspot.com/2012/05/thin-skinned-kids.html
Please know that your family and especially your sweet Ethan is in our thoughts and prayers.