MORE SURGERY!!!!!:(S

Well 2 days after Easton received his infusion through the new port he started leaking CSF (cerebral spinal fluid) through his spine incision. We took him to the children's hospital where we ran a bunch of test one of them was a sedated MRI of the port and spine and all we could tell for sure was that there was a collections of fluid on the outside of his spine, near where the incision is. He had a bulge on his scar that was a pocket of fluid back in November but, it went away so we figured it was healed. We still don't know that it's not. Needless to say we took him home with an antibiotic and decided to keep him on a form of bed rest for a 6 year old so basically he sat home and watched t.v. all day. If he did this the leaking would go away. We thought that after doing this for a couple of days that what ever wasn't healing or whatever was leaking would heal and we could resume our normal activities. YEAH RIGHT as soon as he would do any type of activity he would get a bulge in his back over the incision and it would start a pretty steady stream of CSF. We would then get him back to bed and it, would subside. He can't even go to the bathroom without it flaring up. Tuesday he had an appointment with audiology to check into getting his hearing aides. The trip is about a 20 min ride each way, so not horribly long and he would be just sitting so I figured it would be fine to go to the appointment. Well on the way home he started screaming that his back hurt and by the time I pulled over to see what was going on he was leaking like a faucet with a pretty much steady stream so we hurried home got him in bed and it stopped. We took him back up to children's hospital on Wednesday for the Neurosurgeons to take a look at him and see what they thought. I knew riding in a car this long would make it really flow but to my surprise it really didn't the entire day we were there, it was bulged and his port was swollen and misshapen, so I instantly assumed it was broken again. We decided to try and access the port and take a fluid sample to test for bacteria in case there was an infection starting. All of these test came back free of infection plus the port worked really well so it definitely wasn't broken. All I could figure is that the fluid is building up along his spine then tracking to the port site causing it to become filled with fluid and look misshapen due to the build up of the fluid. The Dr.s put some Dura bond (super glue) on both incision to try and seal them and prevent further leakage. This worked until Thursday night when he couldn't take laying in bed watching t.v. anymore and I let him walk next door well an hour later he was back to leaking. I called the Dr. in the morning and I guess that the neurosurgeons and other Dr.s over the study, talked and decided that the port isn't broke but needs to come out because due to the levels of glucose and protein in CSF his incisions will never heal and the leaking will never stop then it will only be a matter of time before he has an infection which would most likely be meningitis. So Monday morning the device will again be removed. With the port out, he will probably have to wait a couple of months to heal before they will do another infusion and after that his infusions will be done via Lumbar Puncture. Its so hard to see or have a drug that is working and helping your son live a more normal healthier life and now he is going to have to go without it for awhile I just pray they find a different device during this time that will work and not have problems. I am so tired of things right now. I wonder to myself if it's even worth it anymore. How much can we take. I just want him to be able to play and be happy. Plus we are having to sale our home in the middle of all of this. I just wish we could get a break even if its for just a second. Hopefully I'm learning what I'm supposed to from all of these trials.

Oh and he picked his own hearing aids out with dad today he chose brown for the inside and a lovely giraffe print for the outside. It will be exciting to see how they look and more exciting to see how he does with them!!!