Should be a stable Sunday until action on Monday

I came in at 10:45 a.m. and just missed the rounds. Darn it.. it's the DST change that threw me off, plus I was really tired yesterday.

Basically, the nurse told me they have increased the respiration rate of the ventilator to 24 breaths/min instead of 16 when I left yesterday. He wasn't breathing a lot whole, probably because of the sedation, or he's just having those episodes. At 24, it's about the rate of a baby his age. They started feeding him through the ng tube this morning at 20 ml/hour. When I arrived, they increased it to 25 ml and decreased the IV fluid. On top of that, they found something growing in his mucous. Since he was coughing so much yesterday, they did a culture of his mucous and found something growing. His RSV test was negative, so I am not sure what type of virus/bacteria he has again. He's going to be on a different antibiotics, one that helps with this and his bladder infection. There's a chance that he might get his MRI today, but we don't know when. Hopefully, it's today and the MRI can tell us something.

Tomorrow, the team of specialists will be back and maybe we will have another action plan. It's been suggested that I get a second opinion. Aside from the HMO crap, I don't even know which specialist I should get a second opinion from. His current team of specialist includes: Director of PICU (his primary pediatrician here), a few other PICU pediatricians, 2 Pedi Neurologist, Pedi GI doctor, and Pedi Pulmonologist. Where do I start and how? I am hoping by Monday when more tests are being done, we will have an answer.

11:30 a.m.- His IV came out and the nurses are trying to put it back. Didn't work and they need to give him a new IV. He's semi-awake and wiggling. The nurse had to give him drugs to sedate him through his ng tube.

12:00 p.m.- Still couldn't find a good spot. The nurse just asked me if it's OK to put in on his skull. I can't say NO to that. It's not the first time and I know it's hard to see him like that, but he needs his IV. I hated seeing him like that.

12:05 p.m. - He fell asleep now, either because of the drugs or he's just tired from struggling. Now the nurses and Respiratory therapist are re-taping his ventilator tube, re-starting his IV fluid and all the fun stuff.

On the other hand, I wanted to purchase a Acid Reflux wedge pillow for him. He looked so uncomfortable lying in bed with all the towels. This pillow isn't cheap, but he can use that in the hospital and I can bring that back home for him. I called Hank to order it at home and see if we can get it in a day or two, so he can use it soon. I checked-in with the doctor and he's fine with that, as long as he has that 30 degrees elevation.

12:30 p.m.- All the commotion is over. Now he's asleep and the room is all calmed down again.

2:20 p.m. - Logan is nice and calm and sleeping. I think the MRI will be done on Monday instead of today, which may not be a bad idea. Since he's stable, I will leave soon and be back early tomorrow.

Logan is intubated :(

Last night I received a phone call from the doctor at around 12:30 a.m. Luckily, Aidan was awake and he heard my phone ringing. The doctor said that Logan had many episodes between 8:30 and midnight. They tried giving him caffeine to stimulate his brain to breathe, but it didn't work. So they decided to intubate him (put a tube in his mouth to help him breathe). His heart rate and blood pressure didn't dip down too low, but his respiration rate and oxygen saturation did.

8:00 a.m. - Hank took Aidan to grandma's place because he got a cold and he couldn't go and visit Logan in the hospital. He wanted to, but I explained to him that he's sick and if he's sick, he couldn't go. I can't risk Logan getting a cold on top of all of this.

9:00 a.m. - Got to the hospital and saw my poor baby with tubes through his nose and mouth. Even though this is not the first time I saw him being intubated (first time was when he had to be sedated to do a MRI), I couldn't help but cry like a baby. Throughout his hospital stay, I was able to hold it in and not break down, but I guess I have reached my limit. The nurse explained to me that he has to be somewhat sedated because if not, he would start moving and pulling his tubes. They are also monitoring his carbon dioxide level to see how he's eliminating it. Nurse told me that if his respiration rate is over 20, then he's breathing as well. But if it's less than that, then it's the machine doing it.

9:45 a.m. - They did another chest x-ray on him to see the position of the tube. After the doctor checked it, he said it was a little too far in, and would like it to be 1 cm out.

9:50 a.m.- Logan during the chest x-ray. I saw his legs moving. I guess he's not totally sedated and he's awake enough to know someone was messing with him. He's been awake since and it's alost 10:40 a.m., as I type this. He tried to grab the tube, of course. The nurse sucked up some secretions from his throat several times. The respiratory therapist and the nurse repositioned his tube. The nurse had to give him some more drugs to sedate him, but my little boy is such a fighter that he didn't want to go to sleep just yet. I guess it's a good thing that he's still himself (wiggling, pulling, and waving his arms and legs) when he's somewhat sedated? Now I am waiting for the doctors to come and do rounds.

10:45 a.m. -Logan is finally asleep but the machine still keeps on making noisy ding ding sounds. His respiration rate is over 20, that's a good thing. It seems like there's a more serious case next door. I saw a very tiny baby, probably a preemie who was discharged from the NICU but now back to PICU. That baby is so tiny compared to Logan. I hope his/her family is doing OK. I am sure they have gone through a lot, probably more than us.

11:40 a.m. -Just finished with the rounds. We talked a lot, but of course, we don't have any answers yet. Let me see if I can write down what we talked about clearly. Last night, Logan was intubated at around midnight. Caffeine, Zantac, antibiotics, and Midazolam (sedation medication) were given to him. He had good urine output. The doctors talked a while about the pros and cons of giving him Zantac. They said adults sometimes have upper GI bleeding when intubated, thus needed Zantac or some other meds. But the incidence of that happening to kids is low. They gave him Zantac because the episodes worsened when all of his acid reflux drugs were discontinued (thus may be what caused the number of episodes) and also because it was their standard procedure. But the Director of PICU also said there's been debates whether to do so for kids within the last 5 years. We go back and forth about whether it's neuro, or GI or respiratory. My uncle, who's a retired pediatrician, mentioned something about hypoxic seizures. I asked the doctors about it and the director said it's possible as well and it might or might not be picked up by EEG or MRI. We talked about giving Logan a MRI, and will consult with neurologist, esp. since he's sedated anyway. The ultrasound of his kidney showed that the left side is a little dilated. Doc said it could be normal, or not, which might be why he has a bladder infection.

Action Plan for Saturday and Sunday:
1. Discontinue caffeine - since he's on ventilator, it might interfere with pH probe on Monday
2. Discontinue Zantac
3. Feed through NG tube if MRI is not today
4. Continue antibiotics
5. Continue to check blood gas
6. Repeat swabs to check for infections
7. Decrease ventilator rate

Action Plan for Monday:
1. ph Probe
2. VCUG - dye to check bladder
3. MRI - if not done on the weekends
4. consult with pulmonologist to see if another bronchoscopy is necessary

12:00 p.m. - Logan was coughing and the nurses and respiratory therapist suctioned his nose and throat. There was a lot of secretions. They kept on doing that periodically throughout the day.

3:25 p.m. - Got back from lunch with Hank and we're both at the hospital. Logan is waking up and wiggling. He's still coughing occasionally and needed suction. We'll just have to make sure he doesn't wiggle too much or try to pull his tube out. He can't have another dose of drugs to sedate him until 4:15 p.m. I also noticed that his ventilation rate has been reduced from 20 to 16.