"The Place"

Well, we went back to "the place", a.k.a Children's Hospital, on Thurs. the 5th to be admitted since the eye swelling (which is called ptosis), was not improving and Jax was still continuing to have seizures. An MRI shunt series was performed, 24 hr EEG and blood work sent to the lab. In the end, we got good and bad news..good news - all the tests came back good, shunt working properly, no seizure activity noted on eeg (excellent news) and blood work ok (1 test pending that takes 2 wks to get the results)... bad news, still not 100% positive as to why these symptoms have presented themselves.....Is it from the 4 hr ear surgery? The Titanium Incus bone? The anesthesia and the way it is metabolized? Still some unknowns..

We had a follow-up with our neuro yesterday and he was very optimistic that we will get the seizure activity under control with a combo of increased meds and time, the further out we get from surgery date. He does want him to avoid stress and get plenty of rest..defining stress at age 7 can be somewhat difficult..ahhhhh, it is now wait and see...(not my strong suit)

Jackson is still lacking in the endurance department..he will get a spark of energy that will last an hr and then he is back to requiring some rest. I miss my crazy, running-around-like-a-mad-man boy!

God, I pray that Jackson will heal very soon and be back to his pre-surgery status. I don't like thinking that something is wrong with him and I have no IDEA what it is or how to fix it!! Praying for patience and recovery. God has a plan for Jackson, that I do know.

Here's hoping to wonderful updates next time!

Tina

Prayers and faith

I'm not sure what to say tonight.. this week has been so rough, emotionally for us and physically for Jax.

Last Friday we went in for what was planned to be a minor, out-patient surgery to repair his left eardrum and adnoids. The doc found a cyst behind the eardrum that was very hard to get to and required a more invasive surgery than originally planned. Since he had to remove some of the middle ear bones to get to the cyst, those bones can't be put back into place to do the job properly. So Mr. Jax has a prosthetic Titanium incus ear bone!.. only Jax, only Jax..this is only the 3rd time the doc has encountered this situation, well of course, Jax has to add a little flare to the situation.  They also had to cut the small flap of skin right in front of your ear, in order to get to the cyst. This took the time Jax was in surgery to almost 4 hrs.

Soooo.. we come home same day as surgery, granted it took Jax a long time (approx. 3 hours) to come out of the anesthesia. Jax has been resting, drinking fluids and finding small bursts of energy. The sad part is Jax has had 2 very uncharacteristic type seizures (from those prior to Nov.), I can't describe them right now, still so raw. This is also followed by "hooded, swollen" eyelids. Needless to say, we have spoken with each of his doctor's, got an MRI scan, ER visit Sat., increased meds and praying like crazy. I am scared..

The doctor's are telling us that the ear surgery could of traumatized/stressed Jackson's body and he needs healing time. They have also mentioned that anytime a patient with epilepsy undergoes a surgery it lowers your seizure threashold. They are hoping (and I'm praying) that this is the explanation for these issues and once he is feeling better things will even out. Who would of thought, the one surgery that was supposed to be minor, turns into the one w/ the slowest healing time and largest complications??

Team Jax Prayer Warriors - please pray that Jackson heals quickly from the surgery and the complications are resolved SOON! He is trying so hard to find the little bits of energy he has and make the most of them. I wish he could tell me exactly what he is feeling or if there is any pain. I want my spunky little warrior 100%.

I will update again this week. If things aren't better by end of the week, we will go back to Children's for MRI and EEG early next week.

Thank you for your support!
Tina