Rowan is tolerating full feeds of 30mL an hour now. He's a big kid, so to get him some more calories, they are going to start fortifying his food tomorrow to make sure he gets enough nutrition. He hasn't had any more crazy allergic reactions to things we can't detect (knock on wood) and has been on pressure support all day.
Pressure support = When Rowan takes a breath in, the ventilator helps him by adding pressure to let him inhale. The machine doesn't give him breaths, just helps when he takes them.
He is way more awake now. He LOVES eye contact. He gives the nurses dirty looks just like Matt's Grandma used to. He also looks for where the machine beeps are coming from.
Earlier, he was breathing really fast (like 70 times a minute). His blood gas levels were fine, but it was not ideal for him to breath that fast. SO - Dr. Doctor to the rescue! The Doc, fellow, nurse, and I stood around his bed with our arms crossed and just stared at the machine, then at him, for about 10 minutes. After the first two minutes, I kept trying not to laugh because we were all just standing there. The Doc eventually gave him a little more pressure and he is doing much better.
The chest tube is continuing to drain less and less and his x-rays have shown no fluid build up. This is fantastic news! ALSO - Rowan's pancreas is functioning normally. CF kids can have a form that is either pancreatic insufficient or pancreatic sufficient. Rowan's works, so this means that at least for now, he will not have to worry about taking enzymes everytime he eats. His body should absorb fats and proteins correctly and he shouldn't have many problems with digestive system. This means that his CF could be much less intrusive than some forms, which is wonderful.
I do think that getting him off the ventilator is going to take a LONG time even without more hiccups. Being on a respirator for 6 weeks isn't something you can recover quickly from. We're expecting the stay here to be at least a few more weeks. He could surprise us, but we are planning to settle in for a bit longer. BUT I do believe he's going to come home. Which is awesome.
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
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