For your EB awareness week I would love to read a detailed outline of your day, What exactly is involved in normal day to day care of a child with EB. Thanks.
Well, since the moment that Tripp was born- each “day” has been a totally different experience for us. At first, the days were not as hard… it was just dealing with the “shock” and “emotions” of knowing your child has a rare genetic disease. At the beginning, we thought that Tripp had the “mildest” type, as well… so the grief and shock just kept getting deeper as we found out he had Junctional, and then as he just kept getting worse and worse. The days became more challenging as we starting having to spend most of our time in and out of the hospital. First the feeding tube, then the months of breathing trouble until we finally had to put the tracheostomy in. Then dealing with his poor eye problems… all with the skin issues on top!
Right now, a typical day can change at the drop of a hat. And since Tripp became sick (these past 6 weeks), they’ve changed drastically. But sick or not, mornings for him have always been rough. I can imagine how everything just “hurts” in the mornings and must be so sore and stiff. A morning diaper changes usually takes the longest, because I have to change a lot of his dressings along with it… because they are usually covered in pee-pee. Morning diaper changes are painful. And after, he usually will lay with someone in the rocker for a while before he “wakes up.” But while he was so sick, there was never any “waking up”- he would lie in the rocker all. day. long. The past few days have been a little better. He’s has less morphine (except for bath) and he’s seemed a lot more comfortable and playing more. He gets a bath every other day- usually at about 7-8:00 at night (I tend to put it off as long as I can:) The other “EB” things that our days consist of are suctioning (less lately, but sometimes it seems like we are suctioning all day long), tube feedings… which I feel like I do constantly, cleaning up blood from his fingers and toes (it doesn't take long for him to knock one and it bleed everywhere), constantly rebandaging the dressings around his trach because he pulls those out. It's hard to give a detailed day by day summary, because each day always consists of a new issue or a new stressor. When one problem gets better, we are immediately dealing with the next. Never... and I mean never... do we have a day with "no issues" to deal with. I plan on trying to do "some type" of bath post this week. So bear with me:)
Maybe one topic for next week would be a recap of Tripp's life. Your pregnancy, Tripp's birth, finding out that he had EB, and all the milestones and major treatments up until now.
Tripp was born on May 14, 2009. I had the most perfect pregnancy a girl could ask for... never ONCE was I sick and I ate each meal like it was my last :) I was HUGE. See?
My delivery was perfect (well, the 3 hours of actual pushing could have been left out). We opted not to know the sex of our baby... and it made it that much more exciting. Randy had chose the boy name and I had chose the girl name. And while in labor, I remember praying it was a boy because I could not for the life of me decide on a girl's name (I'm showing you my very indecisive personality:).
Anyway, Mr. Randal "Tripp" Michael Roth III was born, and he was perfect.... just perfect. See?
We noticed a huge blister on his head (from birthing trauma) and noticed that his fingernails and toenails were extremely long and a bit deformed. But at this point, we had not the slightest clue what was wrong, or for that matter- what the next year of our lives would entail. I remember that before I even held my baby in my arms for the second time, the pediatrician "on call" came in to tell me that they were about 99% sure that our baby had a genetic skin disease called Epidermolysis Bullosa. "Ok, " I thought... "so now what?" I think it took at least a good two days to even set in initially. No one in my family allowed me to get online to "google" EB. And thank God they didn't. I was up and walking around the next day, but we ended up having to stay in the hospital with Tripp for about a week due to this "new diagnosis." He started getting huge blisters on his bottom from the diapers and we noticed little blisters around his ankle where his hospital band was. I starting trying to breast feed... and he wasn't having it (probably already had mouth issues that we didn't know about). And though I continued to try breastfeeding, I also tried feeding him with a syringe, a haberman feeder (for cleft-lip children), and just about anything I could to try and get him to eat. But since the day he was born... he was behind nutritionally. But he didn't look it... See?
From the day we brought him home, it was chaos. Finding out all of the information we could about this "new" and "very rare" disease, calling for help, family and friends in and out of the house constantly giving us all the support we could ask for. And the chaos has never stopped from that day. When Tripp was about 2 months old, we took him to see EB specialists in Denver, CO and Cinncinatti, OH. And when we got him back home, each day brought on a new issue- literally. At first we thought he had the mildest type of EB, because the blisters were coming on gradually... then we found out he was Junctional, and that most of the Junctional babies don't make it past their 1st or 2nd birthdays. And from that moment- it was on... I was fighting this fight until I had NOTHING left in me to fight- and my little boy wasn't going to be a statistic- unless it was a good statistic. So we learned something new (and are still learning something new) every day. We started bandaging him gradually, as we learned that the more we wrapped him... the more it would protect his skin. See?
We started being able to "deal" with the skin issues... and then we still had the feeding issues going on. He practically got to the point where he just stopped eating by a bottle. I don't know if it had to do with his mouth sores (probably) or some type of sores in his espohagus. Either way... we were not getting anywhere near the right amount of nutrition in him. I tried syringes and every type of bottle you could think of... and I got to the point where I was tired of "fighting" with my baby to eat. I wanted to spend my time "playing" with him, not "feeding" him. So it was time for the feeding tube. *best decision we ever made*... So at about 2-3 months was when started with our hospitalization stays. As he was having the eating issues, he also started with breathing issues. He was constantly on steroids- with constant stidor (a high-pitched wheezing sound when he was trying to breathe). His oxygen levels were never adaquate. We spent pretty much the first 6 months of Tripp's life in the hospital. And in those 6 months, we made extremely important decisions for our son's life. He got a feeding tube and a trachestomy. See? :)
After leaving the hospital with the trach, which was in November of 2009, (as of today) we have only had to be admitted two more times. Once when he turned cold grey and stopped breathing due to a mucous plug in his trach (I was a newbie:) and then this past week! But it's mostly because of his SUPER GREAT doctors and the fact that I pretty much have a mini ICU at home with everything I need to keep him alive and safe:) But... that doesn't mean it's been a free ride. Boy o boy... it's been rough. We have literally had one thing after another. If it's not a skin infection, it's his eyes (corneal abrasions, blisters fusing to his eyeballs), or viral infections, or mouth/teeth issues... pick a problem, any problem. But I have to say... God usually lets one issue "flare up" at a time. Here he is with his eye issues...
The eyes have probably been one of the hardest issues to deal with. About 5-6 times, we've had to hold him down and place a metal speculum in his eye while he was NOT sedated to put contacts in and out of his eyes. Until I finally said- no more. He WILL be sedated when we do this. So now we make frequent visits to the OR to have eye surgeries and contacts put in out.
But no doubt, the worst thing about this horrible, horrible disease is having to watch your one and only son suffer day in and day out... and there's pretty much nothing you can do about it. His blisters don't heal... his eyes don't get better... he can't speak... he can't eat... and he's in constant excrutiating pain. I am head over heels in love with this little guy. And I would no doubt give my life for him to be healed and be pain free.... but I am also thankful that God gives me the faith and the strength to see the bigger picture and know that there IS a plan, and Tripp WAS brought into this world with this rare and horrible disease for a reason. Whatever God has planned for him... I know it will be great. May HIS WILL be done... not mine:)