Tuesday, September 27, 2011


Today was a disaster of a day. Raul woke up screaming really early, diarrhea and vomiting, then right as I was packing up to go to his follow-up appointment at the hospital he pulled his g-tube out (balloon still inflated)! It definitely hurt, and he was screaming. It has only been four weeks since it was put in, so I was a bit worried. I stuck another in, then of course, the tape that was closest should not have been used on him, but in my panic I used it without thinking. Now I am dealing with trying to get the tape off without him totally freaking out and it destroying his skin. Half got pulled up at the doctor's office when the nurse was re-inflating the balloon, and it hurt so much that now he won't let me near it.

Anyway, the doctor says they have no idea why he is still spiking fevers. They said that other than infection, the conditions that would cause him to be spiking fevers are all extremely rare, and that it would be unusual for him to have two extremely rare conditions, and I was like, well he's pretty unusual! Then I talked to some other EB families who said it is actually not all that unusual for them to have other rare conditions. We will go back Thursday for blood work and an appointment with the nurse practitioner. The doctor doesn't want them doing finger pokes, so I am not sure if they will get blood or not.

They also gave us a wagon full of more formula and bags for our feeding pump, which was great. It was quite a challenge getting it back to RMH though along with Raul in his stroller! We both took long naps this afternoon. I had taken some benadryl because last night I got a giant bug bite when we were playing outside, and my arm was swelling, so that helped me nap better! Tonight I got Raul to eat off a spoon for the first time in almost two weeks! It took an hour, but he ate pretty much all of a container of baby bananas. I fed him in the dining room, and he watched a group of adults with special needs who were having a cooking class. I am hoping that we will get to have an early night tonight, as today was a long day!


  1. Keep your head up you're doing a great job

  2. Poor Raul, sorry he had such a rough start. Keeping you both in my prayers.

  3. You're doing a wonderful job... we make mistakes as parents and you are very much this to this little boy. Don't beat yourself over the tape. You did what love and instinct told you to do. I love your blog, your posts and I care deeply for you and Raul. We pray for you daily. Hang in there, I hope you get some much needed rest and when tomorrow comes, I pray more answers will come that are needed to make Raul's life the best it can possibly be. :)