 So 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.
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