9:45 a.m. - Rounds time. Logan has stopped feeding through the NG tube since 4 a.m. in preparation for his MRI. He's scheduled to get the MRI at 11:00 a.m. today if nothing changes. Then he will get his ph Probe. His current weight is 6.7 kg, I think he's been gaining weight, probably not as much as he should be. His lungs were clear, vitals were good. They had to increase his Midazolam (sedation drug) from 0.2 ml to 0.3 ml because he was awake and moving around. It seems like they kept on increasing his drug, it started all at 0.1 ml, I think. From the cardiovascular and respiratory standpoints, he's stable. After the MRI, they will assess to see if he should continue to be sedated and intubated, so that we can better assess his episodes. Will also consult with GI doc to see if he can continue feeds and taking his acid reflux medication after the probe. Also consult with pulmonologist to see if his bi-pap test schedule for next week is still necessary as he has episodes even though he was on it here. I asked how we can tell whether he has reflux since he's sedated and intubated, and we couldn't check the apnea episodes against the probe. Ped explained that even though he's sedated, he could still show signs of discomfort, e.g. movement of his arms and legs, or cough and gag. Then we could tell. I asked again about the seizure activity, and they think it's probably not seizure, but might be something neurological as he has central apnea. It's also likely that the MRI will show that everything is normal and we will have to evaluate again. Logan is scheduled for his Synagis shot on the 11th and I've requested him to get that today, while I'll cancel his appointment in Daly City. Logan will continue to be on antibiotics and hopefully, they will rule out pneumonia. They will also give him caffeine later to see if it will stimulate his brain to wake up and breathe!
10:00 a.m. - The nurses and respiratory therapist are getting him reading to go down for the MRI. He's hooked up to a different, portable monitor and I think they will wheel him down at 10:45 a.m. I will try to go down with him and wait in the waiting area.
11:20 a.m.- still waiting for the MRI to give us the go. They have been changing times on us. I guess there are other emergencies, and I understand that. Will continue to be patient. They are trying out a new ventilator that can go into the MRI room. If not, the respiration therapist has to bag him to give him oxygen the whole time Logan is in there.
11:40 a.m.- Wheeled down to MRI
12:10 p.m.- MRI starts. I didn't wait downstairs as there isn't any room to sit. I actually went over to Patient Records and requested all of Logan's blood work and scans. Unfortunately, I need to do a separate request for San Francisco. The majority of his genetics and bloodwork were done there. They are going to charge me $0.25 per page, let's see how many pages Logan's medical record consist. I bet it's a huge pile!
1:00 p.m.- Came back from MRI and soundly asleep. Nothing eventful happened (good thing!). GI is putting the pH probe in him at the moment and will stay there for 24 hours. Because of the anesthesia, Logan will be sleeping for a while.
1:15 p.m. - GI showed me the "event" button to press in case I see that he's gagging or coughing. An x-ray has to be done to check the position of the ph Probe. Pulmonologist stopped by and said he probably doesn't need the sleep test next week. His lungs are clear and all chest x-rays look fine. Now we're just waiting for results of all the tests and cultures.
3:37 p.m. - Just made a couple phone calls to Lucile Packard Children's Hospital and the Kaiser membership to see how the insurance can cover, should a transfer occur. Basically, if we can get a doctor from Kaiser to make a referral to LPCH, then Kaiser insurance will cover everything, as if we stay at Kaiser. The tricky part is to get a doctor to actually make a referral. I guess we'll have to see the test results and all that, discuss further actions before I make that request. Honestly, all the doctors and nurses that I have ever encountered at Kaiser in SF and in SC have been great. But when it comes to my son's health, I hope they understand why I would want to request the referral.
2 comments:
Wow, you are really dealing with a lot and It's a good stress reducer to get it all out of your head and into your blog. You are a good mommy, so pat yourself on the back V. The boys are lucky. :) Shelley
That'll be great if you can get a referral to Lucille Packard! I heard many good things about that hospital. *crossing fingers*
Bev
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