A little conversation time

Tyler is still in the hospital. He does have an infection, for which he's receiving antibiotics. He hasn't run a fever since Sunday night, though. Thank you for those prayers!! They are mostly concerned about his pain levels right now, and trying to get that under control.

When I was there on Monday night, he was having a pretty good night. His pain was "sustainable", he said. It makes a world of difference when they have it under control. I had seen him the week prior and he was in excruciating pain...blotchy skin, gritting his teeth, hiding his face under a sheet, moving constantly to try and get comfortable. That will cause anyone to cry...not just me, being the sap that I am.

Anyhow, I was pleasantly surprised at how conversational he was while I was there. He wanted to let me know that he had broken a record. I asked which one and he said, "the highest dose of methedone that they have ever given a patient (adult or kid)". Yikes! I'm not sure that's a record worth breaking!! Poor kid! He continued to talk for the couple of hours I was there. When I first offered dinner, he said no, like usual. Until he smelled it. Then he said, "It smells like italian". I said it was and he asked what I brought. I told him "spaghetti with meatballs and lasagna". He replied, "I have a sweet spot for lasagna. Save me a bite. I know I'll have to fight my mom for it!". She saved him some, of course, and he ate it. :) He also carried on with his nurse, Erin, about how he used to love spaghetti and meatballs as a kid. And that he would only go to restaurants that had that. He looked at me and asked if I remembered. I smiled and said I did. I told him I mostly remembered how much he loved chicken fingers when he was a kid. He then went on to tell Erin about a phase of loving only cheese sticks, but that he wouldn't touch them now. Then he started telling stories of how his papa was always trying to get him to try gross things...like deer and liver. I told him how my Aaron was always sneaking venison into our food at home too, and we laughed. He talked about how his papa will eat absolutely anything!  He's right about that one too! So I just sat there smiling as he told all of these little stories. We talked about how much we loved being only children because we got super spoiled, and still are! He went on and on about how his grandma bought him so much stuff, he could barely fit it in the car to take it home, at Christmas. He talked about how he figured out Santa wasn't real when he heard his mom going up and down the stairs at Christmas one year. And how, after that, he would peak at his hidden gifts, even though his mom wrapped them as soon as she bought them. And now, he only got a few gifts because they were more expensive ones...but he misses the days of opening tons and tons of gifts.

I don't remember what all we talked about, but those few things stick out. Before I left that night, I prayed with him. Then, like I do every time, I told him I love him. This time, I got a vocal "I love you too, Aunt Jettie" back. Sometimes he's sleeping or in too much pain for that. That was the" icing on the cake" for my visit!

I'm not sure why I'm sharing details of this somewhat insignificant conversation with you. I was just so relieved to see him comfortable and talking. For those that know him, I hope you can picture his little witty ways of conversing. And remember those times when he was a kid and would go on rounds with his papa and get chicken fingers at the coney, for breakfast :) For those that don't, maybe it's a chance to get to know him a bit more. Just a regular kid, but one we love a whole heckuva lot!

At any rate, he's in enough pain today that they aren't sending him home. Michelle texted me and said "he's miserable", which makes my head go to pictures of the previous week I visited. So please, pray that he'll be comfortable and that the doctors will be able to control his pain. Pray for strength for Michelle and his grandma Didi who are by his side, night and day.

Much love to you all! Hug your loved ones today...have an "insignificant" conversation with them. It might make your day, or theirs!

Ephesians 4:32
Be kind and compassionate to one another, forgiving each other, just as in Christ, God forgave you.

Hospital again...

Saturday night, Tyler had to go back to the hospital because his drain tube from his liver came out. They replaced the tube on Sunday, but he had a fever and his white blood counts were up, so they are keeping him.  He may have an infection in his PICC line. He's getting blood and platelet transfusions and hoping to go home over the next couple of days. He has to be fever free for 48 hours before getting sent home. They are also working on managing his pain while he is there. Please keep him in your prayers.

Settling in

Tyler and Michelle are settling into being at home. Since coming home, the insurance company now has to approve each medication and medical equipment. Some of these are being denied or delayed, so most of Michelle's day is spent on the phone fighting with insurance companies to get approvals. When she's not doing that, she is administering all of Tyler's medications, which is an around the clock job. It is very stressful, so please pray for continued strength for Michelle.

They have a huge support team in the family, as you already know. The family is helping to pick up prescriptions, stop in for visits, bring meals, stay the night with them for an extra set of hands, etc. Please also pray for them that they would have renewed strength and not grow weary in doing good for their loved ones. 

Tyler has been having a lot of pain in his shoulder, back and legs. They weren't able to get his air mattress bed until just the other night. Hopefully that, as well as an increase in his methadone, will get him much more comfortable. Please pray for Tyler's pain to decrease and that he would be able to rest and be comfortable.

They are still traveling to Ann Arbor once a week for chemo. The comfort care team there has made sure to reserve Tyler a bed while he undergoes his chemo treatments, which is so helpful because Tyler is in a lot of pain if he sits up for more than an hour in his chair. While some of the administration at a huge hospital like that is frustrating, it's nice to see the small things they do to put the patient first.

When Tyler isn't in too much pain, he has been up for taking little wheelchair rides, with family, around his neighborhood. I love to hear when he's having a better day and able to get out and enjoy a bit of sunshine and fresh air.

We appreciate your continued support, care and prayers.

"Never, ever ever ever ever give up!" - Winston Churchill

Back Home

Michelle and Ty have had a stressful week so far. They were able to go home last night, but Ty spiked a fever again so back to the hospital they went this morning. Thankfully, he was able to come home again this afternoon. I'm sure it's taking a lot out of them, though. Please pray that Tyler would not get another fever and that they would be able to get some rest. Thank you!

Prayers please

Tyler had to go back to the hospital last night because he was running a fever. 

The fever has come down some and they are running blood work to see what's going on. 

Thanks for your prayers!!

There's no place like home

Tyler was able to go home late last night! The wrong mattress was delivered for his bed, so he's uncomfortable in it right now. Please pray that Michelle will be able to get the air mattress pushed through insurance approvals and delivered quickly.

What a journey, 284 days in the hospital...284 days of his mom sleeping in a chair by his side (which I'm sure she'll continue, but at least in her own living room). I pray they will settle back into home quickly. Pray that they will be comfortable and at peace at home. Pray for Michelle as she becomes his main care-giver. She needs strength and energy and great wisdom. Thank you!

Going Home

The past few weeks have been filled with ups and downs. Tyler had a very rough weekend, with lots of pain, but that seems to have come back under control.

A few weeks ago, they started putting a plan in place to get Tyler home, where he can be more comfortable. I haven't mentioned it, until now, because plans are ever changing for Ty. But yesterday, we had a family meeting and they have set Tyler's go home date for THIS Thursday! Of course, I have to throw out there that this is barring any major hiccups that may happen over the next few days.

It seems like a complete whirlwind is in effect now. Lots of preparations are being made by the family to get the house ready...wheelchair ramps installed, hospital bed and other medical supplies ordered, cleaning, sanitizing, etc. Even more preparations are going on at the hospital. Michelle has been training to do all of the care-giving. She knows how to work his IVs, give his medication through the j-tube, flush lines, drain tubes, practice getting Tyler in and out of the car, etc. Backups for Michelle are being trained this week now too. There is also lots of stuff to pack up and get back home, after having lived in the Ronald McDonald house and hospital room for the last 9 months.

It's all overwhelming and exhausting, to be honest. There have been a lot of mixed emotions leading up to this decision. Lots of talks with Tyler on what he wants and where he would be most comfortable. But, all in all, yesterday it seemed as though Tyler, Michelle, and the rest of "Team Tyler" are ready, physically and emotionally, for the transition to get home.

A visiting nurse will come daily, for a few hours, until Michelle is completely comfortable with the routine and giving all the meds and such. Michelle lives within 5 minutes of her parents, her sister Cheri and Aunt Cindy...and her other sisters, Patty and Tammy, are within 15 minutes. So, help is right around the corner which is a huge comfort. The plan, for now, is to continue to do the chemo as an out-patient. This will require Michelle to bring Tyler to Ann Arbor weekly for the treatments. The first trial run for that will be Monday.

We greatly appreciate your prayers for Tyler and Michelle, and the rest of the team, during this transition.