Happy 4 Months Old, Logan!!!

Day 14 - Hospital Stay
Day 9 - Intubated

Logan turns 4 months old today!! Time flies and because he's in the hospital so much, he seems like a newborn to me. He has continuously gained weight, kinda hard not to when they feed him directly to his stomach. He was awake when I arrived this morning. I let his left arm breathe a little and took the restraint off. I took a video clip of him moving his arm, and will post that tonight when I get home.

He did a lot of lung exercises yesterday. After 6-8 hours of exercise, his blood gas results didn't look good and he needed the ventilator for the rest of the night. At one point, they needed to up his rate to 20 (he's been a 4-6 lately).

Today, he's going to start another routine of exercises. He will be on cpap and breathe on his own for 4 hours, then back on the ventilator for 2 hours while they check the blood gas results. He will be on this schedule for the rest of the day. We wanted to give him a chance to exercise and prove to us that he can sustain enough oxygen in his blood, before we decide to give him the tracheostomy. I also asked the doctors about his diarrhea for the past few days. Doctors have done a bunch of tests to check for viruses and a few came back negative. We're also checking for rotavirus, which is common. Doctors also said it might be the result of the antibiotics, but nothing to be worried about.

Another pediatrician just came in to ask me if it's ok to do an echocardiogram on him. I told him that he's had one done back in February. He mentioned that Logan's heart appeared a little bigger from all the chest x-rays that he's done. He suggested to have the cardiologist take a look at him and to do an EKG on him. If his heart is not pumping enough blood, thus causing the lack of oxygen, that is supposed that medication might help. It might also provide another piece of puzzle to his diagnosis. Since he's at the hospital, might as well get everything done.

11:15 a.m.- Just had his EKG. Mmm...those waves look a little funny. Not sure what they mean. Will have to wait for the Cardiologist to take a look.

11:54 a.m. - Logan is getting tired from his breathing and is breathing at a high rate with small, shallow breaths. The nurse is doing his blood gas and will put him back on the ventilator, so he's not so tired that he needs to play catch-up all day. His blood gas results were fine. But that just means he's working really hard to maintain that level. His respiration rate is really high and he's breathing really hard. He'll get some rest with the help of the ventilator for 2 hours, and we'll try again then.

12:30 p.m. - Doctor said his EKG looked fine but will still have the cardiologist take a look at it. She might still want to get a cardioechogram done since a lot has changed recently.

2:15 p.m. - Logan's respiratory rate is still very high. The alarm has been sounding off all day. They just gave him more chloral hydrate and hopefully it will calm him down and he will breathe better. The poor guy's lips look so dry and gummy from the tape.

3:30 p.m. - The Chief stopped by and told me that she's been in contact with the Geneticist and informed him of the findings from the Opthamologist regarding the cherry red spot. The Geneticist wanted another batch of genetic tests done. The Chief said the blood test will be sent to a lab at Duke and it'll take a week or so for the results to come back. If it's something wrong within this new set of tests, at least the disease is more manageable (though not curable) than the first set of test. For now, Logan should continue to work on breathing, but a tracheostomy should be on hold until the results come back, since one of those genetic disorders could explain his weak breathing pattern, and there might be an enzyme treatment to help with that. So we're back to where we start, wait until the blood test results come back.

4:00 - He finally calmed down and the beeping finally stopped. Took him 4 hours to do that. RT is checking with the doctor to see if we should exercise his lungs, since it's time.

4:30 p.m. - He didn't calm down for long! The Audiologist stopped by to give me the results of the hearing test. No good. Even though she said the test might not be perfect, due to the interference of all the machine, Logan appeared to have severe hearing loss in both ears. :( We need to do a follow-up appointment when he's able to get out of the PICU and go to the clinic, to get a more accurate test done. It appeared the nerves are not working properly, something called auditory neuropathy. But when I talk to him, he would open his eyes. It seems like he can hear me, but it might be just what I want to see or what I am imagining.

4:40 p.m.- They are going to give Logan a little break and not do any more lung exercises. It seemed like he's too tired from yesterday. He will rest today, setting the rate back to 20, and hopefully, tomorrow he's better. He's been very agitated and breathing fast since this morning.
The drug didn't seem to work. His body might have gotten used to it already. He can't be too sedated that he doesn't breathe, yet if he's not sedated enough, he gets agitated. What a catch-22!