Going home! - Thursday

Joseph is eating scrambled eggs and pancakes for breakfast, with lots of water. So far, he seems to understand the need for small bites and lubrication to wash it down. So ... he's watching "Cars" on DVD and having breakfast in bed. What a treat!

We're waiting on getting his g-tube changed to a Mic-Key button and then we're scheduled to go home. Of course, that could take all day, but I don't care as long as we don't have to spend another night here. We've been pleased with all the care Joseph's received, but it will be good to all be home together. All in all, I know this has been a relatively short stint. We count the surgery and speedy recovery a blessing from the Great Physician.

Love,
Jill

More good news! Joseph is still doing well and eating up a storm! This morning he had a vanilla milkshake, chicken broth and grape juice and had even moved up to oatmeal by the afternoon! It's hard to believe this day is finally here. I know that in the big picture, the time has been short (we've only had him home 5 months), but it's been close to 3 years since his CI accident. I'm telling everyone who comes in the room: He can swallow! His fever has also been down, but they want to keep him another day or 2 to make sure everything is working properly. Mom says his stubborness is really starting to kick in now.... he's definitely feeling better :) God-willing he'll be able to come home tomorrow or Friday. His recovery process, though it has seemed pretty long to me, has actually been quite an amazing one, with relatively few complications. I know this is because God has allowed your righteous prayers to be powerful and effective, and I humbled..... so thank you!


~Kelly

Great news!

WAHOO!!! We have seen and experienced the hand of God! Joseph had his swallow study done today and there were NO leaks! The Great Physician has heard and answered your many prayers for a speedy recovery. God gets all the praise!

I heard "I Love You More" from Matthew West both before and after Joseph's test today. Coincidence? Absolutely not! God loves Joseph more than we can imagine. That would be true even if there was leakage, but it's a true blessing that there was not. God has turned his life around.

Joseph is allowed to drink liquids tonight and can go home when he's been fever-free for 24 hours. Thank you, thank you for all your love, prayers and support.

~Jill

Matthew West - More Lyrics

Take a look at the mountains
Stretching a mile high
Take a look at the ocean
Far as your eye can see
And think of Me

Take a look at the desert
Do you feel like a grain of sand?
I am with you wherever
Where you go is where I am
And I'm always thinking of you

Take a look around you
I'm spelling it out one by one

(Chorus)
I love you more than the sun
And the stars that I taught how to shine
You are mine, and you shine for me too
I love you yesterday and today
And tomorrow, I'll say it again and again
I love you more

Just a face in the city
Just a tear on a crowded street
But you are one in a million
And you belong to Me
And I want you to know
That I'm not letting go
Even when you come undone

And I see you
And I made you
And I love you more than you can imagine
More than you can fathom
I love you more than the sun
And you shine for me

It's Monday now and it sure is quiet at the hospital on a holiday. Joseph is doing well. He's been running a fever, but everything else looks good. He's still on schedule to have the swallow study done tomorrow. God's blessings to all of you this Memorial Day!
~Jill

Peaceful Friday night

Wow! Thanks for those prayers! Joseph's fever is down and he's sleeping comfortably. His heart rate and respiration rate have finally settled down, too. What a treat to not have alarms beeping.

He's definitely feeling better because he wants to go home and he REALLY wants to drink. I understand the need to wait for everything to heal, but it's sad that he can't drink anything until after the swallow study on Tuesday. He loves to have his mouth swabbed out with those little sponges, but it's just because he tries to suck out the few drops of water that are there. sigh.

Something funny ... Joseph was able to go for a ride in a wagon, yes, with the IV pole, too. I was navigating all of that and we took a walk outside so that was fun. The hospital has a really nice library, so I took him in there to get a new DVD. Suddenly, he had to go to the bathroom. The problem was that he had to go NOW and I couldn't just rush him to a bathroom because I know the nurse has to measure his output. So, I had him pee in one of those little vomit basins! Of course, they're really shallow, so I knew I couldn't risk sloshing that all over trying to get back to the peds floor. I had to ask the librarian for a cup to pour it into. Then, I had to get the IV pole, wagon and a cup full of pee back upstairs. Once, I had to hit the automatic door opener with my foot. Oh, life in the hospital!~Jill

Oops! with a smile!

The absolutely fantastic news is that at 12:50 p.m. today Joseph swallowed water for the first time in over 2 years! Wahoo! Okay, but don't tell anyone ... shhh. Officially, Joseph is not supposed to drink anything until the doctors give permission after they are sure everything is working properly. Here's the story ... Joseph really wanted a drink of water and I made sure he understood that he wasn't supposed to swallow, but swish and spit it back out. He assured me he would. The 'problem' came because he is used to swallowing down to his reservoir and then using his throat muscles to clean out his throat. Joseph went through those motions, but not much came back out. I realized, "Wow! You actually swallowed and it went down!" He is definitely going to have to learn a "new normal."

Meanwhile, he's more alert and has asked for ice cream and to go home. I think he'll need to stay awake more than 20 minutes before we do either of those. His heart rate, temperature and respiration rate (how fast he breathes) have been high. They seem to go higher when he sleeps. He doesn't seem to be in pain, but we don't know why this is occurring. Hopefully, he'll settle down and have a good night. Steve is staying with him at the hospital tonight.

Signing off,
Jill

P.S. Michele said I should title this entry "Breaking the Rules Again." Remember Belgium?

Joseph Update - Thursday
Jill here. The doctors just made their rounds and Joseph is doing well from the surgery overall. All of the invasive sites seem to be healing well. However, he has been running a fever and his heart rate is elevated. I got to be Mama Bear last night to respectfully insist on a blood test to rule out infection. It's extremely easy to do since he has a central port, so I couldn't see a reason not to. The test came back negative, but at least I have the peace of mind that he's not leaking internally somewhere.

Now that it's the 2nd day post-op, Joseph is more alert. Although he doesn't seem to have much pain now, he's very afraid that something is going to hurt. He's got very shallow, rapid breathing and he may be afraid his stomach incision is going to hurt if he takes a big breath. He needs to get his lungs fully inflated to ward off pneumonia, so that's the specific prayer request for today.

He's starting to show a little bit of his stubborn side, so in some ways he must be feeling better!
Thanks for your phone calls, prayers and support. It means a lot to the entire family.
~Jill

Hello All!

I just got back from seeing Joseph this afternoon and get to type this entry from the children's library at Riley :) Joseph is doing well - although to look at him you can definitely see his body is under a lot of stress. His poor face is pretty swollen due to all the fluid they pumped through him during the surgery! (a surgery which, by the way, mom thinks took closer to 6 1/2 hrs. instead of 5. ) The little man has a million different tubes hooked up to him, but he seems to be taking it all in stride. As for side effects, he has had a fever this morning, but it's gone down a lot this afternoon. The docs also said he has some fluid in his lungs, but hopefully that will resolve itself w/time. All his incision sites seem to be healing well, and the chest x-rays he's had checked out okay.

He's slept pretty much nonstop since the actual surgery, but he does open his eyes every now and then. He managed to wave (or, rather, flop his hand around in the air) when we came in to see him, but he hasn't really been up to talking yet. Considering he's got an epidural on top of lots of pain medications, he may stay pretty lethargic possibly until Friday or Saturday. It's kind of weird to see him so out of it - for those of you know him, he's normally a VERY expressive 5 yr. old!! Mom plans to stay at the hospital with him again tonight before Dad takes over tomorrow.

For the most part we're still in a "wait-and-see" stage, it's all too recent to really tell how his body is adapting and such. He's still got quite awhile to go - they've got some testing scheduled for this Monday and he may be able to be released after that.... as long as there's no leakage. If there is, he may have to stay a few days longer. Until then, God is faithful!

~Kelly

Surgery Update

Okay, well Joseph has gone under the knife and is back on top again! Around 8am this morning my parents took him to Riley to have an reverse gastric tube procedure. For those who don't know, this is a pretty drastic procedure that involves removing all the damaged parts of his esophagus and then replacing it with a tube created from his own stomach tissue. They didn't get started with the actual surgery until around 10:30 and lasted for slightly over 5 hrs. I am told he behaved pretty well until it came time for the sedatives, when he started acting (understandably) scared. Apparently his hard head forced the nurses to give him a little extra knock-out than usual, so I think he settled down pretty well after that. :)

At this point the doctors have said the surgery went very well. There weren't any complications, although removing his esophagus was more difficult than expected because of the amount of scar tissue - that part of the operation took at least 2/3 of the total time. Although done w/the surgery, he probably won't really be "with it" until tomorrow morning, so we'll have to wait until then to see how he's taking it all. The main concern now is that there might be leakage at the spot where his new esophagus attaches to his throat. That can lead to infection, and monitering that aspect of the recovery is what will keep him in the hospital for several more days. Mom is spending the night with him tonight, so pray she actually gets some rest - ha! We're all planning to go up and see him tomorrow morning.

I want to thank everyone for all your support - Joseph has been so blessed to surrounded by prayer and love, even from his little sunday school friends! Lately he's been asking everyone "You will be praying for my surgery?" and thanks to God we have good friends that are able to answer "Yes." (It's too bad you can't hear his accent....it's much cuter that way ;) Well, that's all for now, but I will keep you posted as to his progress. We definitely appreciate you praying for a quick recovery and complete healing.

Love,
Kelly

Well, here we go! After a long silence ... Joseph is doing extremely well adjusting to our family and life in America. All in all, I'd say we've adjusted well to him, too! God is so good to give us a bright, funny, strong-willed boy to fit right into the Dyer family.

The big day for Joseph's surgery is tomorrow (05/19). He was a little sad today when he learned he could only have clear liquids, but he's already looking forward to eating soft foods. He's told me that he's not going to be scared and he's going to be nice to everyone tomorrow. When they ask him to open his mouth, he will. smile.

Thank you for all your prayers and support so far! Joseph's Sunday School class made him a book to take to the hospital, reminding him that they are praying for him. Thank you, Miss Stephanie and Miss Tricia! Thanks for making the surgery a positive experience for him and his classmates.

Tomorrow morning, Steve and I will head to Riley Children's Hospital at 8:30 a.m. with Joseph. His surgery is currently scheduled for 10 a.m. (They've already changed the start-time once today.) They expect it to take 5 hours. We'll try to keep you "posted"!

Joseph has shown some signs of worry, understandably so. He asked me why he's having the surgery tomorrow. (He's known it's been coming, but it's always been way in the future.) I told him that it's a good thing to get his throat fixed and we're doing it now so he'll be all better before his birthday (July 4th). That's a good thing to look forward to!

Thanks for your thoughts and prayers,
Jill