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I apologize for not posting anything earlier, we want to let everyone know that Ender was discharged to home on Christmas Eve. We received extensive training on how to flush the PICC line with saline, then pump antibiotics, flush again, then push heparin, twice a day. He is back to normal personality wise though he has some minor side effects due to antibiotics. He has been smiling so much! 

We have a home health nurse that comes twice a week to check him out and change his dressing. He will have many followup appointments in the coming weeks and months, but at this point we are so happy to have him home!

Rooney still good!

Christmas Pic!

A Long Day

Today was a Marathon.

Ender's Infection Disease docs are kinda stumped by how Ender got Meningitis again, so they decided to get an MRI of his spine as well as his brain. They decided to stack a PICC line procedure (Eventually we will be able to give him antibiotics from home) and another lumbar puncture at the same time as the MRI. He was put under general anesthesia this morning at around 9 am. We were unable to be present due to the anesthesia. Everything went smoothly and he woke from his long nap at 2 pm. When he got back to the floor from the recovery room, his favorite eye doctor came in and checked his eyes, most likely his least favorite part of the day.

Later in the afternoon, we received the results of his MRIs:

-Blood clot open and almost resolved.
-No significant swelling in the brain besides some Ventriculitis
-Most importantly, no brain damage.

A large weight lifted from our shoulders.

This evening, Ender is getting another MRI to look at a small pocket of liquid on his spine that could be either an absess (grouping of infected cells, would need a longer course of antibiotics) or a pocket of fluid from repeated spinal taps. Neither is a danger to his spine.

Ender remains a very sick little boy, but we have much to be grateful for. We are happy to be spending the Holidays with family, even if its split between home and the hospital. Happy Festivus;)

Waking up from his procedure

Still groggy

Enders favorite hospital bed

Mom reading to Endy

Sleeping with Papa

THERE'S A SMILE!

Yes, we still have little Rooney!

She is happy for her brothers test results!

Rooney is grateful for Grandma's

Round 2

Hello,

Yesterday evening, Ender started getting fussy and refused to eat. This being abnormal, Libby and I decided to take him into the ED at Children's. (Urgent Care was closed) By the time we were seen at 11 pm, Ender was very uncomfortable and fussy with a fever of 101.5 F. The doctor couldn't find a reason for the fever, so he decided to start a round of antibiotics due to Ender's past history. He also decided to do a spinal tap to check for Meningitis. When the results came back, to our horror, Ender has Meningitis again. Libby (mostly) and I held Ender throughout the night.

Today around noon, the Infectious Disease doctor informed us that they think, though almost medically impossible, that the Ecoli bacteria may have never fully been eradicated. They said that Ender would need at least another 42 day round of antibiotics, more frequent spinal taps this round, and some more MRIs. Round 2 at Children's has begun.

From what I can tell, we caught it really early. Ender told us immediately how he felt, and luckily (most likely because of his past) he got started on the right antibiotics quickly. He is currently at about 21 hours of treatment, and is less fussy and visibly looking better. He is however very tired and uncomfortable when moved. He has started eating and voiding once again.

Obviously, we are incredibly frustrated/angry/#$%, though Ender continues to take every poke, prod, procedure, like a champ. We love him and appreciate the support from everyone who has already shown it.

Here is a couple pictures of Ender after waking up and feeling a little better. We almost got a little smirk from him.

This is where he is right now, snoozing away.