May 6

Will didn't have a great day today. It was terrible, but he was having some breathing episodes. They called in the ENTs because they initially thought that the trach tube might be too shoet. They determined that the tube size was fine, but that he needed more pressure to keep the airway open. They went up on his ventilator pressure and that seems to be working. Hopefully he won't need the extra pressure for long. we really don't want him to have to come home on a ventilator or CPAP. If he does, that means he's hooked up to equipment all the time and he can't just be a regular baby. It will be really hard to take him anywhere because of all the equipment, so that means he'll be stuck in the house most of the time. It's not fair to Will. It's not fair to the other kids. I can't make them stay home all the time, but I'll feel horrible if I have to leave Will home with the nurse so I can do things with the other boys. I desperately want Will to have a normal, happy life and I can't imagine how he'll do that constantly hooked up to some kind of respiratory equipment. Matt and I were taking a walk with the boys tonight and all I could think was that we wouldn't even be able to walk aroung the neighborhood with Will without it being a major ordeal that pratically requires a hospital on wheels. Hopefully I'm worrying for no reason. He may just need the exta pressure for a few days. And I have to keep in mind that all of this is temporary. He's going to outgrow it all within a couple of years. But I still worry about the problems this could create for him later in life with learning to crawl, walk, talk, etc. Please pray that Will overcomes this quickly. I just have to keep the faith that God is looking out for him and it's all going to be okay. But it really gets discouraging sometimes.
Hays has had a good day. His zantac seems to be helping- thank goodness. But now he's crying, letting me know it's time to eat!