Rough week

Well after so many good days, Riley has kind of hit a rough patch. Please forgive me if I get a few of these details wrong or use the wrong words...I've had a lot of medical jargon thrown at us lately so I'm probably confused on some stuff...

A few days ago her oxygen kept desaturating, which means she wasn't getting enough O2 into her bloodstream so they were constantly having to raise the amount of oxygen they were giving her. After doing a scan of her lungs, it appeared that her tiny airways were clogged with mucus. It isn't abnormal for mucus to build up, but normally it secretes out and they suction it every few hours. However, they were blocking most of the airways keeping from them from expanding and allowing more O2 in. They gave her some sedatives, and did a CPT (?), where they hook a tiny vibrator up to her chest to shake loose the mucus plugs. They said it seemed to work, as they were able to suction quite a bit and her levels started improving. As of yesterday at noon, that's the last we had heard.

We didn't go back up last night, and didn't get a phone call so we didn't find out until today at noon that she had a very rough evening. From what we were told today, she started to de-sat quite a bit, to the point where they had to bag her twice. Our Neonatologist, Dr. Hsiao, said that it could be an indication of seizure activity - even though there were no outward signs of it. The started her on Phenobarbital, anti-seizure medication, and did an EEG this morning to check her brain for electrical activity, among other things. The specialist won't be in until late tonight to review those results, so we won't have any answers until the morning. Another cranial ultrasound has been scheduled for sometime in the next few days as well (was due for one on Tuesday anyways) to check for hemorrhaging, etc. They also said it could be as a result of infection, such as pneumonia or sepsis. If she shows any more signs tonight, they will start her on antibiotics right away. The longer they leave the ventilator in her, the more at risk she is to infection in her lungs. It has now been in there since birth, and by this point they normally would have liked to wean her off. Over the last week, every time they try to wean her down, based on good blood-gas results, she doesn't react well and they have to turn it back up.

When we left there this afternoon, she was holding steady at good levels and hadn't had any more episodes of de-sat or similar seizure activity since putting her on the phenobarbital. I asked about long-term effects if it was seizures, and they said that so far she hasn't had any long periods of oxygen-deprivation in the brain, which would be the only thing that could cause major issues. However, if the seizures were to come back after awhile and after taking her off the anti-seizure medication, that she would have to go back on it for an "extended period" - I don't if that meant months, years, or even lifetime. Let's hope that's not the case...

So, to say the least, the last 2 days have been kind of rough on all of us. Many people have told me that throughout this journey there will be quite a bit of "bad days" to go along with all the "good days". I guess its just extra hard because this is the first really tough time we've encountered since those first few days. Pam and I wanted to just stay up there all evening, but our good friends Sam and Tena are getting married tonight, and we are both in the wedding. Depending on how things go, we might try going up after the reception tonight or first thing tomorrow morning. I'm praying for good news.

Please keep us in your thoughts and prayers that we can get over this hump and back to more good days. I'll post again tomorrow after we find out the EEG results.