Ups and Downs

Hi Everyone,

Jackson has been having some ups and downs. First of all, his MRI result Thursday, came back with the last radiation injury spots disappearing and some new ones appearing. This is normal and to be expected with the amount of radiation that he had to his brain. Everything else was fairly normal. No signs of infection in his ventricles. No pressure from fluid. The only thing that they did notice was that the tubes leading up to his kidneys are larger than normal, but it could be from the fluids that he has been on. They are double checking it today with an ultrasound.

Yesterday was a good day for Jackson. He didn't have a fever, he was eating a bit, drinking, coloring, and playing with his PT, Jaclyn, when she came by for a visit. Last night he became very irritable, and couldn't get to sleep. We gave him some benadryl and that seemed to help, but he was still having some crying outbursts, so we gave him some Tylenol. About an hour and a half later, they moved him out of the PICU to his own room. When we moved him he screamed that his back was hurting, and we also found that his fever had returned. This morning started off with him feeling ok, but soon after him falling asleep, he began with the same disoriented, angry, painful outbursts. He seems very sensitive to light and sound.

The best the docs can come up with right now is that he is fighting some sort of viral infection in his brain. They said it could be the virus that we all had a week prior to him getting sick. If it is that, then he just has to ride out the illness. They have also mentioned that it could be a herpes related virus and in that case, he will have to go on antivirals to I assume shorten the duration. He has viral panels out right now, but that takes days or so to get results. Right now we are just trying to keep him comfortable. He is still on IV antibiotics even though his cultures are all coming back negative. We just wait I guess to hear, oh yes we found out what this is, and treat or not. Or, we have not found anything because there are thousands of viruses to test for and we may never know, but he is better now so you can go home.

On a better note, I have utilized our time up here to get some help with where to go with Jackson's education and how to get an IEP started for him. I have also got a referral for some more therapy for him because physically, he has seemed to reach a plateau. Jackson has an educational liaison and teacher here if he feels up to doing some kinder work. Her name is Gina Ditto and she has been very helpful with the IEP information along with my friend Kim, who has started a foundation called the Pediatric Brain Injury Foundation.http://pedsbif.org/ Everyone that has been involved in Jackson's care and journey has been so helpful and we are so very fortunate. Thank you everyone for following. I will post again if we get any more information soon.



Jenise