Update

Well things have been up and down with Jonathon.  Just when we think were headed in a positive direction we take two steps back again.  This is the worst infection I have seen him have and I thought the other ones were bad!! When I picked him up from camp on Friday he was very tired, which I expected him to be five days of fun and not sleeping well, would do a number on him. So when Saturday rolled around I figured take it slow and not do to much we will be OK.  Well we went to go look at some rentals and had a visit with my Dad, which Jonathon loves to go to because there is a pool and he can go swimming.  He never ever passes down swimming no matter how cold the water is!! Well he put his feet in and said its too cold and changed, I should of known right there that he wasn't feeling well, he just looked drained. His big beautiful blue eyes were a cloudy gray but he said he was just tired.  So, we got home I re-wrapped some areas that could possibly be something with some bactroban and off he went to bed. Well let me tell you when he woke up on Sunday he was burning and would not even get off my floor.  So his dad and I decided that it was time to take him to the ER. The drive to the hospital is about 35-40 minutes away and by time we got here he was not doing good at all he could barely walk into the ER.  They took him right in to a room we didn't even go to triage.  Went through the whole history what is EB, does this look normal and what do you think is wrong?  Finally got an IV in him and took some blood, cultured the blister, and started the medication.  At that point it was up in the air if he would stay or not it was up to me unless the blood work showed other things that were concerning.  Well about two hours after everything they came in to recheck his vitals and his fever had gone up and his white blood cell count was 16.5, with all that it was not my choice and the ER pedi decided he needed to be admitted.  So, here we are a day and half and things are about 50% better. He has had 4 IVs put in because the medication is burning his veins and now they are running out of spots to put it so, lets hope this one is the last one!! His fever keeps returning so they are giving him Motrin and Tylenol to make sure it stays down, he is getting constant head aches when the fever returns and then he wont eat much but, his belly is upset with all the medication and the IV antibiotic.  He is still not himself!! Hopefully tonight goes better and things will really start turning in the up direction.  I miss the girls so, much and hate that I can go home get stuff and then leave right away but, I dont like leaving him here alone that long because even though he knows what they can do and not do they dont always listen to him. So, we will see what tonight and tomorrow brings but, hoping for a release for tomorrow!! Thanks to everyone who has visited and called him and sent me messages, it is really appreciated!!  Goodnight