Sunday

Jay has not had much improvement from the procedure. He has been able to sleep peacefully with little pain. 

I wish there were more of an update but right now we are playing the waiting game.

I'll update if anything changes. As always thank you all for the thoughts and prayers. 

Rest comfortably

Jay did well with the procedure. He rested comfortably for a few hours after and is now having a CT as following up. He had a head ache which was easily managed. But not other pain. 

It will take a few days before we know if the shunt will help him.  He will have an MRI tomorrow to see if the swelling is going down. 

We continue to be thankful for the last 3 years and the time we have spent with our babies. We keep in mind that he could have easily lost his battle long ago. He is tough as nails, big as a bear, and will NEVER STOP FIGHTING! 

Thank you all for the thoughts, prayers, kind wishes, good energy, visits and on this particular day a big THANK YOU for wishing me a happy birthday. 

New Day...New Plan

Jays doctor has decided to have a shunt put in Jay head to drain the fluid into his abdomen. He hopes this will help clear up his speech and increase his ability to move. The procedure will be done this afternoon.

The down side is the risk for cancer cells to spread to the abdomen. The doctor has a plan for treatment if the cancer spreads from the shunt.

Jay slept great last night. His mind is still sharp he just can't talk. I pray the shunt will help him to be able to communicate better. 

Will update as we know more. 

Jay has been hospitalized

Jay has been declining each day this week. He fell again this morning, luckily just an abrasion on his hip. But because he is unable to walk or transfers himself from a seat to a chair he has been put in the hospital, for his safety and also to try to keep him comfortable. 

His ammonia levels are coming down, now at 80. His confusion is better. Unfortunately he is unable to  speak clearly or move very well. He did have chemo today, which will probably be his last treatment. There is swelling in his brain which is causing the issues. They have tried high dose steroids and also using a needle to pull the fluids from his brain. But things are still not improving. 

He will have another MRI this tonight to see if they can determine what is going on and if they can help him.

I'll try to update when we know more. Keep us in your prayers. 

one step forward... two steps back

Jay had a fall, around 1:30 this morning. 

He was getting weaker yesterday. And more confused with more slurred speech. He was unable to walk with his walker last night or move him self from the couch to his wheel chair. I put him to bed at 10:30. He tried to get up to go to the bathroom at 1:30 and fell. Since then he has declined pretty fast. He started throwing up around 6:45 this morning.  

He is at the cancer center getting an MRI of his head and spine. They are also checking his ammonia level. 

We pray for answers and peace and healing for Jay! 

update

Friday we received great news, The spinal fluid is showing no cancer cells. Jay will continue with his current treatment in hopes of keeping the spine clear.

Unfortunately he is having a hard time with high ammonia levels, partially due to previous procedures but mostly due to pain meds. His ammonia level was 120 Friday and 160 Monday. It causes him to be weak, sleepy, have slurred speech and confused. We've increased the meds which clearing the ammonia. It could take a while to get the level back to the normal range of 15-50.

I will try to update more often. Thank you everyone for the continued prayers. 

Hard at Work

Wester boys hard at work. 

Jay seems to be doing well today.