Wednesday, May 26, 2010

Still here but doing better...Now going home!

Kind of a long explanation but I am trying to answer questions that we have been asked. And I am sitting in Brayden's room with not much else to do...

Brayden was extremely out of it yesterday (Tuesday). He was in a deep deep sleep for the majority of the day, the brief moments he was awake he was very upset. I spent most of the day in bed with him, cuddling him as tight as I could without setting off the monitors.

He slept pretty well through the night. His pulse ox went extremely low in his sleep, which we are finding that is not uncommon lately (we are waiting for a sleep study...another brief stay at Children's sometime this summer). As a result he is put back on oxygen. This is not a result of this prolonged seizure. When he goes into a deep sleep..he sleeps a little too deeply.

The high white blood cell count is no longer a concern. The explanation that I got was that a combination of the long seizure and lots medications could result in high WBCC. Since he has been here in the PICU, the count is back to a normal range. It appears there is no infection.

As for what caused the seizure, they do not know. Every few months Brayden seems to have break through seizures that are a major episode and require medical attention. This one was certainly his worst ever episode.

The game plan: He could to moved from the PICU as of yesterday afternoon but we are waiting for a bed in neurology. He will be watched to see if he returns to his baseline activity. Yesterday, he was not at all. This morning his eyes are open, very tired looking but understandably so and he is not moving much but he still hooked up to lots. His neurologist, who he has seen since a newborn, stopped by yesterday and talked for awhile. There will not be changes to his medications or the keto diet, since he has been doing so well (down from 5-6 small seizures a day to 1-2). This break-through prolonged seizure just might be what he does regardless of medications and diet. As for any damage because of the seizure she said any seizure long or short could cause damage, since they are part of his daily life then this is not too concerning. There will be a better game plan for any future prolonged seizures since he did not respond to medication very well this time around.

It looks like he will be discharged tomorrow. UPDATE: He is being sent home this afternoon because we have a nurse, medications, a monitor, oxygen, etc. all at home so they are comfortable for us to watch him from home! And we will check in with his regular doctors via email/phone.

Today we sit and wait. Thank you for your prayers.

As I was getting ready this morning, I heard the familiar tapping at my front door. We have many birds that find their reflection in our front door kick plate and tap at their new found friend. Most mornings there are some sparrows hoping around. The amount of bird poo and the annoying tapping is not my favorite thing. However this morning, I thought of the song His Eye in on the Sparrow (one of my favorites) based on Matthew 10:29-31

When Jesus is my portion? My constant Friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I’m happy,
I sing because I’m free,
For His eye is on the sparrow,
and I know He watches me.

“Let not your heart be troubled,” His tender word I hear,

And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

He knows Brayden. He knows Brayden's brain. He knows how much my heart aches when Brayden goes through this. There is so much comfort it that.


The VW's said...

Praying he does well at home and everything goes back to his new normal! Being in the hospital is so tiring and depressing, so I'm happy to hear that you are able to go home!

Keep looking to God and I'll be praying that He continues to give you peace, knowing that He knows Brayden and has him in the palm of His hands!

Love, Hugs and Prayers!!!

Mo said...

Home Sweet Home...please take it easy and snuggle Brayden for me.

Ampelius Demetrios Guy said...

Poor kid.