Today we had another appointment this time with transplant and gastro. So it seems that no sooner we stopped the IV medication and switched to oral medication his EBV level (Eppstein Barr Virus) went way high again. This means that we had to reduce his immune suppressant medication in hopes that his own immune system is strong enough to fight this EBV. Lennon will require weekly blood tests to check his level and see how they are fairing out. If they do not go down and/or he becomes more sick they will do a scan checking for lymphnodes. This also may mean that he’s going to get another ‘permanent iv line’ and go back on IV medication, but everyone agrees that this is not what we want due to the high infection rate he has with these things.
On the positive note, Lennon has been cleared to go back to school and I hope to get him back beginning on Tuesday. Will have to make some mad phone calls on Monday i.e. school, nursing care provider etc. Overall the docs were happy with the way he looked i.e. active, no jaundice etc.
It’s interesting because Lennon is still quite moody and concerns came up that his ammonia could potentially be elevated but no other signs are present for this. My ultimate thinking on this is that we have had a new nurse for two weeks now, and he is STILL testing, manipulating and seeing just how far he can go and push her. It will be interesting going back to school as we are going to see if the nurse is or will go with him, how it will be handled by the school, insurance etc. though the thinking is that if he’s approved for x amount of hours it shouldn’t matter…but I don’t (at this time) have a clue about this and will be interesting to find out.
This is all I have for now/today. I’ve been super busy with my business and start new classes on Monday.