Matt Man Epilogue

In most of the good shows on TV (there's really only 3), there's the "rest of the story" or an epilogue.

For our brave son, his epilogue involves winning the "tube game," going to Subway and then having some possible ongoing issues.

Yesterday (Monday the 9th), Matt went to see the doctor that did his surgery. He was pleased with the healing of Matt's incisions and gave Matt the "all clear" from a surgery standpoint. Matt was told he would be able to have his NG tube out and he pumped his fists with excitement. He is now officially "tubeless."

After the appointment, we headed to Subway to give Matt a chance to eat without any extra things in his way. He was happy to have the tube out and would likely have eaten just about anything.

His mood improved right away and the rest of the day was spent talking, singing, or eating without being annoyed by the tube.


As a result of the surgery, Matt came home with some equipment. He has oxygen and a "pulse-ox" or oximeter to measure his oxygen levels and his heart rate. Last night, we heard the alarm on the machine beeping several times. I investigated and discovered that his heart rate was dropping below the alarm setting of 50. Matt was awakened by the alarm so I'm not sure it was a concern, but we have called the cardiologist to see if we should do something more.

Stayed tuned (can you really be "tuned" to a blog?) for more riveting posts from the never dull, and always crazy Price clan.

Matt Man IX

I wanted to title this post, "Matt Man The Final Chapter" but thought many might be concerned that something bad happened to him.

It is our day of freedom at last! We got out of the hospital, but not before a frustrating time getting a tube back in for feeding. He was not a happy camper during the procedure.

He's home now and obviously feeling better. He's playing air guitar as he listens to music.

I managed to get all of the vendors to come to our house (they had our neighbors address for some reason) and of course they showed up at the same time!

But now we are settling in and trying out our temporary "new normal." We have some of the hospital equipment here - suction, pulse oximeter, oxygen, and feeding supplies. Hopefully we can wean off of the feeding supplies as he eats more.

Thanks again for thoughts, prayers, visits, phone calls, and well wishes. It is greatly appreciated.

Matt Man VIII

Happy 4th of July!

We are hoping for our freedom today! The plan is to go home today if we can get everything lined up. We need some supplies and equipment and hopefully they can be delivered on the holiday.

Matt had a pretty good night. He slept fairly well and his nurse was wise enough to know that some things don't need to be done any more - like vital signs every 2 hours - and just let him sleep.

Unfortunately at 5:30 a.m. Matt decided he didn't need his NG tube any more and pulled it out! Now we have to wait for speech to evaluate him again to see if he can eat by mouth otherwise he will need to have the tube placed again. Either way, I'm still pushing to go home. We can manage what he has now inside our own 4 walls.

Matt's had some great visitors that have boosted his spirits and encouraged me. Thanks to all who could come and to all who are here in spirit. When we have support like this, it makes the journey easier.


Update: we are not going home today. It's been a day of ups and downs. He had a shower and was up in a chair and ate some applesauce and pudding! And then we tried to have the NG tube replaced in the room, but that failed. We can not get the radiology team to assist with the NG placement so we have to stay one more day. :(


On a completely non-Matt related note - if you are a MN Wild fan, the next season looks very promising!! The Wild signed the two most prized free-agents on the market. That means the Wild WILL be competitive and the hockey will be exciting! As a great fan of hockey, this news got me excited on an otherwise frustrating day.

Matt Man VII

Tuesday morning. We 'slept' in a regular room last night. Let me add that 'sleep' is not quite the right word when you are in the hospital so let's change that to 'stayed in a regular room.'

The good news is that after a horrible day yesterday, he's doing much, much better. He had a good 4 hour nap late yesterday which was good for the move from ICU. After getting up here, he listened to some tunes on his iPod and then I had to force him to go to bed.

He's handling the junk in his throat a lot better. He's off of his oxygen for now. He's keeping his oxygen levels in a decent range without the O2 so that's also good. He's getting in and out of bed easily when directed.

He's also got his sense of humor back - in part due to some pain medication - but as the doctor said to Matt as he left the room, "If you are fist bumping, then I don't think you need to be in the hospital." :)

The plan for the day is to see speech again to see if he can swallow and ultimately eat by mouth instead of by tubes. If all goes well, the ENT doc thinks we could get out of here tomorrow!

I would love to have God's vision of all of this. I believe pretty strongly that when a number of people come together and pray for something that God moves. He's told us in the book of James that if we are in trouble, we should pray. I know a number of you have prayed. When you add up all of those prayers, God moves. Not that we manipulate God, because we can't, but it's like ALL of your children asking you for the same thing. You think about it more simply because of the number of requests. So thanks for praying, it's having an affect.

Matt Man VI

Without being too gross, the overall battle for Matt is against secretions or junk in his throat. He can cough, but can't spit it out. He's too weak to get it out and it just sits there. Thus he needs some help via suctioning.

Monday has been a tough day. Matt has been keeping his sense of humor up until today. Today was his mental breaking point. He has cried several times and complains of pain or being tired.

It's been a frustrating day for Matt and for me too. Before I got here of the doctors removed a tube that made it easier to suction Matt. Matt was as mad as I've seen him when he was suctioned after that. His nurse agreed to replace the tube and that made a miserable experience a little better.

Speech came to evaluate his ability to swallow. He was upset and tired and didn't really do enough to give them an indication of whether or not he could eat by mouth. They will try again tomorrow.

The doctors were just here this evening (5pm) and we basically concluded that he will be in the hospital at least one more day. They had scheduled him to go to a regular floor earlier in the day so that's forward progress, but as of 5pm, that hasn't happened.

Matt Man V

Sunday - Matt stayed by himself Saturday night! For the previous 2 nights, Laura or I had slept at the hospital, but we were not needed for anything so we decided to get better sleep in our own beds.

They tell me he had a pretty good night, but still was suctioned regularly.

Today, his surgeon called us at home. He said that Matt should not have been left off of his Robinul (a med for drooling) that he was on before surgery. He believes that leaving him off of it may be contributing to the extra secretions that Matt is battling against. In addition, they are giving him a steroid to help with the swelling in and around his mouth.

They just place the NG tube for feeding. He wasnt' happy about it, but he needs calories. He just had an X-ray to confirm the correct placement of the NG. He's now resting comfortably with his iPod.

Both the surgeon and the ICU doc feel that he's making good progress.

I asked Matt if he wanted to say anything to his adoring fans, but he declined for now. I'm sure he will have something to say in the very near future.

People have asked what they can do. Prayer is definitely appreciated. I truly can tell when people are praying. Often times we pray for God to grant wisdom to the doctors. I can testify how important that prayer is. When his surgeon called this morning and said that Matt should not have been left off his Robinul, I felt like that was the "missing piece" we had been looking for. Without that wisdom, we'd still be guessing how to help Matt.

If you do feel like visiting, the easiest thing to do is call me so I can explain how to get here.

Matt Man IV

Laura stayed with Matt last night and will be there today (Sat). She reported that they had to suction Matt every 1-2 hours during the night. He's not coughing up junk very well and needs help to get it out.

When you are in the hospital in order to go home you need all of the tubes they put in you to come out (sometimes you go home with one). We call it the "tube game." It's scored like golf - the fewer tubes you have, the closer you are to victory. I know, it's a little silly, but you have to use humor and games to get through hospital stays.

Matt has scored a "2" with the another tube being removed yesterday! Now he needs to get off of oxygen and get his IV out to win the tube game. He also needs to handle the junk in his throat.

He was winning the tube game, but hasn't won the infection/junk game. He has some kind of "bug" that needs an antibiotic and needs the repeated suctioning. He will stay in ICU at least one more day.

Saturday night:

Matt will be taking a temporary loss in the "tube game." He hasn't eaten in 3 days so they are concerned about his nutrition even though he's had IV fluids. He also isn't swallowing very well. Tomorrow (Sunday) they will place an "NG" tube in so they can feed him. Not the direction we want to go, but necessary to get him healthy.

He's also getting a medication via a patch (no he doesn't need to quit smoking), to help with his secretions.

Matt Man III

Friday morning around 9 a.m. the moment Matt has been asking for - the tube in his throat has been removed! When he heard he was getting the tube out, he pumped both fists! He still has his sense of humor and wit.

He will stay at least one more day in the ICU to be closely monitored, but at least he can breathe on his own. He will have a swallow evaluation today to make sure he can manage food and drink. He would really like to drink something, but we'd like to make sure everything works so we don't need to put a tube back in.

He had the swallow eval at about 2pm. He did OK, but really needs to do better before he can eat or drink.

Thanks again to all who have prayed and are praying.

Matt sends the "thumbs up" sign.

Matt Man II

It's always amazing to me how God orchestrates things, but especially when life is a little more intense.

Today (Thursday) I was at home for a short time while I prepared for some work I needed to do when Matt's very good friend, Peter called. Peter has been Matt's friend since 8th grade and is the truest of true friends. I had Peter on my mental list of people to call, but had not gotten to him before he called our house.

He was hoping to hang out with Matt like they've done for a number of years. Since Matt was in the hospital that wasn't going to work. I had the opportunity to mention Matt's situation and Peter thought he would be able to come and visit Matt. Not only did he and his dad come visit, but they were kind enough to drive me back to the hospital, visit, and then bring Laura home!

God shows up in so many "coincidences" that you really have to be blind NOT to see Him at work.


An update on Matt's status - Thursday afternoon he tried to breathe without complete support of the ventilator, but was having spells of apnea (no breathing) and was not successful. The plan is to keep him on the ventilator for another day and try again. He also is running a temperature so there is some concern about possible infection.


Tonight Matt watched some Tim Hawkins videos on You Tube - his favorite. He was fairly responsive and interactive. He's using sign language that he picked up at school. I'm impressed with his ability to try and communicate without his voice.

He's in some pain from time to time, but calms down quickly when pain medications are given.

To all who are praying, thank you. It is very much appreciated.

Matt Man

I haven't had to post personal messages for quite some time. I've tried to keep the medical information to a minimum.


Yesterday (Wednesday) we brought Matt in for an elective surgery to help with his drooling. The surgery went well! He was in recovery for a little while longer than expected, but that was partially because he didn't wake up fast from the little anesthesia he had.

Once he got to his room, he was alert and responsive. He was in some pain, but doing OK overall. He was having a tough time coughing and needed some suctioning. It was no big deal for a while, but his O2 sats (oxygen saturation levels) were going down. As the afternoon and evening wore on, the sats got worse and he was having to be suctioned more and more. His pain level was fine and all the rest of his vital signs were fine.

Eventually his nurse called for respiratory therapy to help with suctioning and his airway. They put him on a bi-pap machine to force air into his lungs. Unfortunately his O2 sats weren't as high as they would have liked. That meant he needed to go to ICU.

The trip from his room to the ICU was mildly eventful as he started to become less responsive. By the end of the elevator ride, his nurse, the respiratory therapist and the nursing assistant who were bringing him down, were "running."

A little aside - We've all seen and "ER" type show and how they run with a critical patient. Let me say that reality is a little different. You can't run with a hospital bed, a bi-pap machine and an IV pole. You can move more quickly and work hard to get him stable and they did. They handed him off to the ICU staff who got him settled. This was the "please step out in the hall" moment of the evening.

We now return to our story - Once in his new bed, I was allowed back in and they took some blood to get his oxygen level. I could see the dark color of his blood which is supposed to be bright red and I could see the looks on the faces of the staff. The levels came back way too low and they decided to intubate him which means put a tube down his throat so they can hook up a machine to help him breathe.

There were no less than 8-10 people in his room working quickly to get that done for him. I sat in the corner and watched my own version of "ER" played out on my son. I'm thankful to God, that I understood enough of what's going on so that I wasn't being freaked out. I was definitely concerned, but OK enough to watch this happen.

The part that bothered me is what Tim had said the day before Matt's surgery. It went something like, "I hope Matt's surgery goes OK, cause I would rather have him drooling than dead." When your 9 year old has a premonition-like comment, it weighs heavily on you. You wonder if you made the right decision to help your child by putting him through this.

He became more stable throughout the evening and night. I eventually left his room to get a little sleep. He's not out of the woods yet (Thursday morning) as he spiked a temperature overnight. His breathing and O2 levels are a lot better, but he's got the temperature and some crud in his lungs.

So we are back to the wait-and-see or should I say pray-and-see stage. The thing I didn't mention above is how I waited so long before I started praying. We have access to the creator of the universe and yet so often I forget to ask for his help. After the craziness, I opened the bible on my iPod and it was at the verse in James that says "is any of you in trouble? He should pray." Yep that's us, we're in trouble and we're praying now.

Another Tourney

A month ago I was writing about tragedies in life - poverty, earthquakes, early deaths etc. Now as I sit here, our family is anticipating another state tournament in adapted floor hockey.

What's interesting to me is the amount of energy I (and many others) put into the up coming games. We read about the opponents, we talk about who we'd rather face, we prepare celebrations, we honor our kids for their hard work so far and we get nervous! Yes nervous! Why? I don't really know. Everyone likes to be on a winning team, but when you compare a sporting event with the more serious topics poverty and death, it really doesn't belong on the same page.

A bunch of kids from several teams are going to gather at one place and duke it out for the honor of "State Champ." Don't get me wrong, it's a great honor and it shows a dedication to a lot of hard work. But in the light of those more serious topics, it fades so quickly.

I am mashing this around in my head because I recall our first state tournament. We had never been there before and I had never played a sport so I had no expectations whatsoever. I was merely thrilled to be there. I remember talking with the coach briefly about the upcoming games and trying to size up our chances of any kind of success. It turned out that we not only had a good chance, we were "State Champs" that year.

This year with 3 tournaments under our belt and 2 previous championships, I find my nerves getting to me if I think too far ahead. The sad part about this is that if I don't get them under control, I am going to miss the excitement of simply being at the tournament. On the other hand, I get the nerves because we've had a successful regular season and we do have a legitimate shot at that coveted title again.

I've watched the kids go through these before and I prefer their attitude to some extent. In most games, win or lose, about 10 minutes after the game they're back to just being kids. They leave that emotional baggage on the floor and go on with life as if they'd never been in a heated contest.

So here's to a good tournament for every team, a fun time for all the parents, family and friends and may the best team come home "State Champs."

Go Fish

I'll bet you thought I was going to write about a card game that you've played before. Well, that's not even close!

We had the awesome privilege of meeting the group "Go Fish." We now have a family member who is a semi-famous singer with this group. He made his on stage debut in the great city of Sioux Falls, South Dakota on February 17th. He's now local famous (that means we know about his fame and so do you because you're reading this).

Who is he?

How did he get on stage?

Can I get his autograph?

Matt Price is his name and he is the 14 year old phenom who placed a wish with the Make-A-Wish foundation. His request was to sing on stage with the Go Fish Guys.

Make-A-Wish contacted the Go Fish Guys and they graciously agreed to meet Matt. They did more than just meet him. They allowed Matt and his family to attend their sound check before the concert in Sioux Falls.

We had an incredible evening talking with the guys, watching them prepare for their show and even helping a little! The kids assisted Jamie as he blew up the beach balls used in their show.

Matt's autograph is available for those who wish! We don't charge for autographs in honor of the Go Fish Guys who like us are happy to share two things - a signature and the fact that we love Jesus.


Here is Laura's recap of the trip in case you haven't seen it yet:

A Disclaimer - kleenex may be warranted for this section. We accept no responsibility for tears spilled. Don't even think about contacting your lawyer if you cry during this section!

Make-A-Wish rented 2 vans for us, one accessible van for Vicki and another mini van as we would not all fit into one. I drove the "other " van with the 4 boys in it. They were thrilled because there was a DVD player in the ceiling. The wheelchair van did not have it's own DVD player but our wish granter had lent us her own with 2 screens, so Vicki got one and Rachel the other. That sure does help the time go faster.

Our first stop was in Mankato where our long time PCA, Ashley, goes to school. We got to visit her apartment and have lunch with her. She was amazed how small her apartment seemed when all 9 of us were in it!! She sent us off excited to hear we would swing back through Mankato on our way home and share our stories with her.

We had 3 rooms booked for us right across the hall from the pool at our hotel. There was a bouquet of balloons, cheese puffs and an arrangement of candy bars waiting for Matt in his room. The pool had a smaller slide which kept the boys going, and a hot tub for us all to relax in.

We swam some more the day of the concert and watched "Enchanted" on pay per view while we waited for time to pass for the next activity. The restaurant next to the hotel brought Matt's favorite meal, spaghetti, for us with a virgin strawberry daiquiri for him and huge, delicious desserts for us all. We waited to dress for the concert until after the meal, thankfully!!

We were picked up in a limo bus with a wheelchair lift and whisked off to the Sioux Falls Convention Center. We went in and sat in some chairs waiting for "the guys." Jamie came over in jeans and a tee shirt. My same children who have been SO EXCITED to meet the Go Fish Guys all of a sudden shyly said,"Hi." They looked like every day guys, and... they are!! Thankfully they are all dads too so they weren't too stunned when Tim jumped up from his seat and hugged Andy around the legs (they are all pretty tall) and started crawling through Jamie's legs!

They took time to sign each of the kid's Snazzy shirts. Then we took a group photo.

We talked about Matt's wish to be on stage with them and that Victoria's favorite Go Fish song is 'You're My Little Girl.' They don't usually do that song on this tour, but decided that would be a good one for Matt to join them on. Scott told Jamie that a glow stick might be a great mic for Matt. :)

We got to watch as they did their sound check and chatted some more with Jamie as he blew up the beach balls for the performance. They even do some of their own grunt work!!

The concert was GREAT!! They are very good performers but also really try to make connections with the audience, waving to many of the kids and later coming out and giving high fives during one of their songs. The most demonstrative of our kids was Rachel who screamed with delight through most of the show.

Then it was Matt's cue. He and the Sioux Falls director of Make-A-Wish went back stage. Jamie talked about how this was a special night. He told how Make-A-Wish had contacted their manager about a 14 year old boy, Matthew, who could wish for anything in the world, and his wish was to be on stage with the Go Fish Guys. It showed in their actions that it meant a lot to them too. Jamie invited Matt to join them in singing Victoria's favorite song since 3 part harmony is good, but 4 part is better. Matt was a little tentative as he walked on stage and stood between Jamie and Andy. Jason made a comment that he likes Matthew because he has hair. (Andy and Jamie have both shaved their heads). Matt used his glow stick to sing with "the guys." Andy waved to Victoria as they sang and Matt mainly stared in awe at Jamie during the verse but then did join in for the chorus. When the song was finished, the audience gave Matt a standing ovation. Matt waved to the crowd, and Mom and Dad cried.

After the show, some of the concert goers would stop Matt and say "Hey, aren't you the singer with the Go Fish Guys? Way to go!" It was very cool. He told me he had been nervous before the show. I assured him that the guys probably were too. His other comment to me was, "Mom,I got to stand next to Jamie."

We hated to leave, but there was a huge line for other fans to have items signed and get to say hi to the group. We went back to our hotel and ate the left overs from our spaghetti lunch. They had given us enough for 2 meals.

Matt had not slept well the night before, but slept very well after the concert. The next morning we all got up, went to breakfast in the hotel lobby,went swimming, and then finally had to tell Matt he had to get out of bed at 11 because we had to check out!!

Make-A-Wish had arranged for us to go to a butterfly house in Sioux Falls, but Matt was not interested and we were anxious to head home. Unfortunately, we did not include the little boys in that decision and they were very disappointed when they realized we were not going there. We were in Mankato and they told me in no uncertain terms to GO BACK!! Sorry boys.

The road was rather scary as we drove on I-90 and saw about 2 dozen cars in the ditch. The wind was blowing straight across the road and there were big patches of ice. I was glad we did not have our full size van as the mini vans did not seem to catch the wind nearly as much.

We have some video of Matt's debut from back stage and Scott is putting together a movie of our trip, but for now you will have to see the photos we have. (No videos or pics will be posted here to respect the copyright of the Go Fish Guys).

We are very thankful to Make-A-Wish and the Go Fish Guys for making Matt's wish come true. Thank you for all of you who prayed for us. It was a very special trip.