Saturday, October 25, 2008
1, 2, 3, 4, 5, 6
Tre` can count to six. I want to teach him his ABC's but I need to hear a seven (the two syllables). He's gotten a lot better with his speech, too. I'm very proud of him. There is a new update but I need a minute. Oh, it's good news!

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posted by Tre's Mom @ 6:43 PM   0 comments
Friday, October 24, 2008
There was a lot of confusion about this sleep study. I’m not exactly confident that they had all their orders straight. I wasn’t worried but confused. His tech entered the room and put on all is equipment. Tre` fell asleep between 10 and 10:30. By MIDNIGHT he was capped. The tech was so impressed by his numbers; he decided to leave him capped. By the middle of the night it was decided to leave him capped. And capped he stayed! Yay! We haven’t gotten an update from ENT as of yet. We may not get them until the next trial, the trach removal.

The tech said that all his numbers remained unaffected by the change. This is a good sign obviously.

He did a great job!

posted by Tre's Mom @ 5:49 PM   2 comments
Wednesday, October 22, 2008
How Do You Sleep During A Sleep Study?
Seriously?!? How is anyone suppose to sleep with wires up the wazoo? Tre` has wires glued to his head and his chest, wires in his trach, tubes in his nose, and a band around his chest. Poor kid. He's not even trying to go to sleep, either. No he wants to play with his straw. If it's taken from him, it will be hell to pay!

So the tech (there are no nurses) told Victor that there is an order for him to be capped half way through the night. While setting up the appointment I was told that he is ONLY supposed to sleep as he would at home. I'm so confused, right now. I'm sure he'll be okay (IF this is the plan), at LEAST an hour. He has taken naps before with the cap on.

Oct 22 2008

Oct 22 2008
Sleeping 2

posted by Tre's Mom @ 9:35 PM   0 comments
Tuesday, October 21, 2008
Oh Wow...We're Having A Sleep Over :(
ScreamingSo there’s been a little change in plans! His ENT had a sudden change in our game plan. Now Tre` WILL be having a sleep study done. With this sleep study he will do an overnight at the hospital. There’s nothing special about it. He would sleep as he does at home. What they are looking for is a baseline. They would like to see how he sleep and obviously monitor him closely. Originally she thought he could do an “all in one” during one hospital stay (cap one night or two then pull the trach the following night). I’m not sure what changed her mind but now this is what we have to deal with. We're heading in tomorrow (10/22) night. Oh joy...

Being that the hospital is a two hour drive we wanted to see if we can find a reasonable priced hotel close to the hospital. They frown upon both parents in the room overnight. Here was no such luck. EVERYTHING was too expensive. So we’re going to stay in his room for as long as we can, then we are going to camp out in the car. I know, it’s sad isn’t it? This was brought on so late I didn’t have a chance to reserve a room at the Ronald McDonald House.

We aren’t too nervous about this trial. However the next trial is a totally different story! The next trial is capping overnight followed by decannulation. A patient can stay n the hospital for as little as two days. The receptionist informed me that her child stayed for five days and a lot of times patients fail the first trial.

We want this for him so badly. It was a upsetting when the plans were changed but I understand that no only do we want him without a trach but we also want it don safely…I just don’t know if we can have any other sudden changes or surprises.

If anyone has a prayer to spare, please send it our way.

posted by Tre's Mom @ 8:59 PM   0 comments
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