He opened his eyes!!

Day 11 - Hospital Stay
Day 7 - Intubated

8:55 a.m. - Arrived at the hospital to see my baby. Noticed he had his catheter in by his neck close to his shoulder. He also has restraints on both of his arms so that he couldn't move. The X-ray technician came in to get his daily Chest X-ray to check his tube positioning. Talked to the nurse and got some updates on him. He had one apneic episode last night. He's not as sedated now, that's why they needed the restraints on him so that he couldn't pull anything. If he woke up and go irritated, then they will give him more meds. He opened his eyes just now!! I haven't seen his eyes for a week now. I think he heard my voice and I reassured him that Mommy is here. He's semi-awake and his mouth is moving a little. Now I'm waiting for rounds to start to get his latest updates.

10:00 a.m. - The doctors finally came in the room to do rounds. I saw them talking outside for a long time about other patients and also Logan, and I was afraid they won't come in. So what's happening now is they are going to do the cpap 4x per day for 2 hours to see how he breathes on his own. Breathing is the most important thing to focus on right now. He's on the maximum dose of caffeine for now to help stimulate his brain to breathe. An Opthamalogist will see him today to dilate his eyes and evaluate his pupils, optic nerves, etc. He's on a low dose of antibiotics for the dilated kidney in case there is an infection. The VCUG will be in the future as he's still intubated, but in case there is an infection, the antibiotics should killit. The ph Probe result came back and he has no acid reflux! We don't know if his reflux has gotten better or he actually never had it. At least it's one thing less to worry about and 2 medications less to take. We had a long chat about what's going to happen now. We still have to wait for the results of the genetic tests but it will be a while. So we have to focus on his breathing. The ideal goal is that he can breathe on his own without the extra assistance of the ventilator. But it seems like his breaths are still very shallow and erratic. His lungs are find but it's just he's not breathing enough. We'll see how he breathes and see if his shallow breaths are enough to give him sufficient oxygen. If not, we'll have to talk about different options for him.

10:30 a.m. - The Geneticist called me during rounds. So I called him back and we discussed about what's going on with Logan. Of course, he can't tell me what it is until the results. He said he wouldn't be surprised if it's negative or positive with anything. Aside from MELA (one of the Mitochondrial diseases), he's suggesting other tests such as Hemophellia (blood clotting disease), amino acids, organic acids, lactate acids, pneumonia, etc. He explained that if MELA comes back normal, we could still do a muscle biopsy to see if there's anything wrong, though the results won't tell us specifically what's wrong. He agreed with the other neurologists that it should be a last resort as it's an invasive procedure. He said if we have a diagnosis of some sort, we will definitely have a meeting to talk about it. He and the Chief also prep me that sometimes we just don't know the answer and we'll just have to treat whatever is going on.

11:00 a.m. - Nurses and respiratory therapists are all here at the moment to re-position Logan's tube. The Chief saw the x-ray and wanted the tube to be 0.5 cm out. They will redo an x-ray at 1 p.m. to check the position again. They are going to change the cpap to no pressure support for 2 hours at a time, to see how he does. Let's hope he can past this test! He's awake now after all the commotion. I talked to him and saw him looking at me, but I really don't know if he can see me. :(

11:30 a.m. - The nurse gave him some eye drops to dilate his eyes in preparation for his vision test. He's so awake right now. Moving and wiggling. It must be uncomfortable to have that tube inside of him. He has a lot of secretion in his mouth. I hope it's only from the inability to swallow and not because he's sick.

12:30 p.m. - Eye doctor is not here yet. He's supposed to come at noon. Logan was moving around so they have to give him some morphine to calm him down I was hoping he could do without it, but the more he moves, the more irritated he is. Now he's finally sleep. That drug works fast. I know he's sleepy too as he's been awake for over an hour now.

2:15 p.m. - As I came back from my lunch, the Opthamologist was finishing up the eye exam. He told me some complicated stuff and my understanding is, as far as his vision goes, he can see in a way. But his vascular layer was thinner than normal (not quite sure what that means) and he mentioned something called the cherry red spot. One thing I understand is, he has a delay reaction to following the finger if you move it from side to side. Technically, if his overall health gets better, his vision will get better. But if whatever is causing his health to deteriorate, his vision will deteriorate as well. He explained it's like when you have a high fever, your vision will get blurry and won't be as good. But as you get better, your vision will improve. Whatever other findings he has, will help the pediatrician and other specialists in determining the answer. The other abnormal findings that he has will be part of the list of symptoms to the big unknown. I guess I should be relieved because I have this gut feeling that he can't see me. I am happy that I a wrong.

2:30 p.m. - And of course, I have to just go ahead and Google whatever I don't understand from the doctor. And of course, the result of my search was not good. it showed another disease (Tay-Sachs disease) just as deadly as Mitochondrial Disease. I really need to stop doing this and be patient until the blood tests come back.


5:00 p.m. - Almost time to go home. I think Logan will be stable and I hope he will be stable for the rest of the night without any apneic episodes. Please pray for my little boy.


p.s. I notice that I have readers from places that I don't know anyone. Do you mind telling me who you are in the comment section? Friends or family in Scotts Valley, Lake Mary, Salinas and Beijing?? Thanks for reading!

p.s. Even though I might not respond, I do read every comment left for each post. Thanks!!