Surgery Update and a Glimpse into our days

Tyler's vitals are good, except that he's running a fever still. They are going to try again for surgery in the morning. Please pray that his vitals will stay stable and he will have a successful surgery in the morning. If you could also pray that the family gets some much needed sleep tonight, that would be great.

Since we've got some good news going, I'll lighten it up and welcome you to our new temporary home, the waiting room. We've basically moved into the place. I haven't seen less than 8 people there at a time, and as many as 25 or so. He's got a huge support system, both on line and in person!

The place wasn't clean enough for Patty, so she brought in all of her own cleaning supplies and scrubbed the bathrooms, door handles, pop machines, window sills and mopped up the floor a bit.

She even put a candle in the bathroom to make it a little homier!

And because those waiting room chairs do NOT make for a good night's sleep, we've added some air mattresses to our arrangements. 

We're eating healthy...okay not so much...

Patty is taking a lot of pleasure in giving Cheri a painful massage here...

Here's Tammy at her "home office" working on some IEPs

I don't know where Patty found this wheelchair for a little comic relief this afternoon

As you can see we're laughing, crying, eating, sleeping and even cleaning - we're totally settled in...but ready for our boy Ty to get better so we can all get out of here! 

I also want to give a shout out to our support systems who are keeping up with our laundry, house cleaning, taking care of our babies, bringing us food, etc. etc. so we can live our lives in the waiting room for a few days or weeks, or however long it takes. We have amazing husbands, families and friends!!!!

Love you all!!

Surgery Delayed

No surgery this morning. Tyler's blood pressure is too low. They've given medication to increase it. They are hoping for tomorrow or Monday. No visitors today. He needs to be left alone to heal.

Tyler is extremely irritated. Everyone is very emotional and sleep deprived! so please keep the prayers coming!

I will update you all if there are any changes.

2nd Surgery at 7:15 am tomorrow

Tyler is still in very critical condition. He has done well these first 20 hours or so since his surgery. He is sedated but comfortable (as far as a pain level).

The chemo did its job in taking his white blood cell counts down to fight the cancer. But that is now a double-edged sword since he needs these to fight the bacteria and infection from having his stomach open. All of his numbers are going in the right direction though. His blood pressure has been super low but it is on its way up right now which is awesome!

The surgery tomorrow will be to try and figure out next steps that will allow them to close the wound. They want to make sure he is draining correctly and there isn't any infection before doing that. They may even put a feeding tube in to bypass the stomach to allow it to heal.

As long as his levels stay sustained, they will be doing the surgery at 7:15 tomorrow.

God's mercies are new every morning!

Thank God we are seeing progress. Tyler is not out of the woods but the doctors have now said we are taking this "day by day". I can't tell you how much better that sounds than minute by minute!!

He is still on the ventilator and about 20 other machines. He will remain this way until he is stable enough to go back in for surgery, probably Saturday.

He is awake though and what a relief to have him asking questions via pen and paper. Tough questions to answer like  "am I dreaming?" or "could I have died" followed by an apology to all of us that we have to be here. We never thought we'd be grateful for his eye rolling and looks of embarrassment when his crazy aunts say the wrong thing to him! So happy to see the many sides of his personality showing through again, after being masked by extreme pain over the last couple of days!

The priority is to take care of his stomach so the cancer treatments will be on hold. This stupid tumor is along the back of his abdomen and touching many major organs. We are praying that God will give his surgeon, Dr K, great wisdom on what to do next. We are praying that it will stop growing and even miraculously disappear.

I want to tell you how overwhelmingly awesome love looks. A family  camped out all night in the waiting room on the most uncomfortable chairs, pretending we might get a bit of sleep. People praying to our awesome God  when they've never called out to him out loud before. Tons of people from everywhere praying for a boy they may have never met! A rock solid mom who will not sleep or eat or leave her son's side! His mercies are truly new every morning!!!

Thank you for your prayers and support!!! Keep them coming!

Prayers for Recovery!!!

Tyler took a turn for the worse tonight. I am here at the hospital with my family. He just got out of emergency surgery. The short of it is that the tumor is choking his bowels which caused his stomach to enlarge. They drained 4 liters of fluid from his belly (outside of his stomach and bowels). He had a hole in it that they needed to patch. This is only a bandaid and they have to allow his body to come out of this shock before they take next steps. They could not close him up. He is in the ICU and we are minute to minute, hour to hour at this point. 

We have seen him just moments ago and his color is good and he was responsive to his mom and dads voice, Praise God!

We are not okay if I'm being totally transparent. Just devastated! 

Please my fellow prayer warriors lift Tyler up to the throne! We need a miracle here!!!

In Christ

Jettie

Urgent prayer needed!

Tyler has been taken to the ICU. I have no other details right now but will update once I do!

Rough Night

Just a quick little update. Not a lot of sleep last night for Michelle or Tyler. Still in lots of pain. They've switched to some stronger pain and nausea meds. They're making him a little loopy, but still lots of throwing up and not much resting going on.