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.
Tuesday, July 10, 2012
Thursday, July 5, 2012
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.
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.
Wednesday, July 4, 2012
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.
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.
Tuesday, July 3, 2012
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.
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.
Monday, July 2, 2012
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.
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.
Sunday, July 1, 2012
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.
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.
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