Praying for a plan

Tyler had another procedure yesterday where they wash his belly out and do the cinching together of his stomach. He's in some pain, but otherwise everything is the same.

The surgeons are suppose to meet tonight about his case and then tomorrow they are suppose to review his cancer case again with the cancer board. We're praying that a plan will be revealed for his cancer treatment. Please join us in praying for some good news and a clear plan for Tyler's case.

Progress Report

You have probably already heard that Tyler got his slurpee on Thursday! Tyler is looking pretty good today. He was talking quite a bit last night with me and his papa. That was the first I've heard him talk with his trach collar. It was great!

He's making good progress with his stomach. The swelling is way down and he's starting to sit up more. His physical therapy is going well. He even stood up yesterday and took a couple of side steps. He's very weak, but definitely showing progress.

The surgeon came in this morning and said he's close to getting out of the ICU. He just needs to make some more progress with his trach and his food/diet.

In terms of the cancer, she also explained that UofM is one of few hospitals that takes a multi disciplinary approach. They have a team of 30 doctors from all areas (surgeons, pathologist, radiologists, oncologists, etc.) that meet on Wednesdays to review the cancer cases. They reviewed Tyler's case last Wednesday. Because his case is rare they did not come up with a plan yet. The team wanted more information and time. So we do not have any answers on any of that yet. Still waiting!

Food Coming Soon!

Tyler passed his swallowing evaluation this morning - so he will be able to eat real food soon! We're happy about this progress. Poor kid hasn't had food since October 1st. And now he's one day closer to that Slushy!!!

That's our piece of good news today.

We're still praying for continued progress and strength for Tyler. The biopsy this week was really painful and took a lot out of Tyler. We still haven't been presented with a plan for the cancer yet. You know, we've been told that a case like Tyler's is only seen once every 5 years. It's a really rare tumor. Please pray for wisdom for these doctors.

I read this today and loved it, so I'll share it with you. Praying that these things remain true for Tyler and this family through this awful season of our lives.

Another Surgery in the Books

Tyler was in surgery again for most of the day yesterday. If my count is correct, I think that makes 10 surgeries now. Yesterday they did another biopsy of the tumor and pulled his stomach a little closer together. Hopefully the biopsy will give them the info they need to come up with a plan for the cancer.

Today Tyler will have another procedure done on his trach. I'm not really sure the details of that, but I think that's the only thing planned for today.

They have assigned him a team of specialist for his long term pain management. We're hoping they can get him comfortable and be able to manage this for the long term, since he'll likely be here for another month or more.

As always, thank you for your continued prayers for Tyler.

Procedure after Procedure

That's pretty much what Tyler's weekend has been like. He's had a pick line put in, x-rays, blood work, more stitching, more drains, etc. He's not really a happy camper. His pain is still high, but they are managing it better now. He was awake and watching football most of the afternoon today. He seemed real crabby, not wanting to communicate or anything. I know he's not loving it here...or maybe it was because he was watching the Lions?

At any rate, it seems everyone is settling in here and beginning to trust the doctors. We're still waiting to hear a plan on the cancer. He will have another surgery tomorrow to do a biopsy of the tumor. Hopefully that will give them enough information to make some decisions on treatment.

It's going to be a long treatment and recovery here. It's nice to be at a hospital that puts the patients and their family first. The accommodations are amazing. My kids love going there...it's like a field trip for them. Today, they were in a day camp where they did some crafts, played at the indoor play center and had a snack. This allowed me to hang out in Tyler's room uninterrupted for a couple of hours. The Ronald McDonald house is just a short walk away and that allows for someone to stay the night with Michelle so she doesn't get too lonely in the evenings and mornings. I can see she is loving that.

Here are some photos...

This was from the other hospital...a celebration day for Tyler :)

I bet Michelle doesn't miss these - parking tickets because they thought her car was an employee's vehicle

My kiddos meeting R2D2 at the Star Wars Bingo they had for patients and family members at UofM

Dennis doing the chores at the Ronald McDonald House

The grown ups having a little fun in the kids indoor play area (I nearly threw up!)

Better day!

Thank you for your prayers today. Michelle had a much better day! She met the oncologist team. They need another biopsy before they can figure out the plan. Michelle also got a room at the Ronald McDonald house. So a family member can stay with her and she doesn't have to live out of her car. She's back in the zone!

Out of the Zone

Well, I've referenced Michelle's "zone" a few times on here. Yesterday, she finally reached the breaking of the zone. They took Tyler down for surgery around 12:30 and he did not get out until almost 5:30. During that time, she received NO updates on what they were doing, how Tyler was, etc. It was extremely stressful for her.

They also reduced nearly all of his pain medication in half. You may remember from my earlier posts that Tyler has a very high pain tolerance and it took days to get his regimen to where it needed to be to keep him comfortable. Now that they are messing with that, Tyler is in A LOT of pain again, especially after yesterday's surgery...so much so that it brought his rock solid mamma to tears last night!

As for the surgery, they have decided to make closing his stomach their top priority. Warning: this will be the most non-medical explanation of what they did...they removed the wound vac and put something else in its place. It's a clear thing that they sew in the part of the stomach that is open. It will help to pull the skin together. They will slowly pull that closer and closer (through multiple surgeries) until they can close his stomach (or something like that). 

They aren't even talking about the cancer and Michelle hasn't even met an oncologist yet. This is not the path she was hoping for here. We thought they took the case because they thought they could do something with the tumor. The surgeon told her yesterday that they took the case so that they could close his stomach. She doesn't know where they stand with the cancer treatment. The lack of communication is very frustrating!!

We're sure they have a plan, and it doesn't look to be the plan we had hoped for, but we're still trying to trust these doctors for Tyler.

On a good note, Tyler was able to get some water and applesauce today! The first food in over 2 months!! They are going to work on getting him to sit up, even though it's painful with his stomach. This will then allow him to make some further progression towards eating food and getting that slurpee that he wants so badly!!

As you can see, there is a lot to pray for here. We need doctors that will communicate the full plan. We need Michelle and Tyler to feel comfortable here and be able to trust these doctors. We need Tyler's pain to be under control. We need to hear a plan for the cancer treatment. We need for Michelle and Tyler to have renewed strength to keep fighting and not grow weary and hopeless.

Love you all! Thank you for partnering with us on this journey!