Updates on Logan's January Appointments

After a whole bunch of doctor's appointments and tests, here are the updates:

Sleep Apnea Test Result (1.20.09)-
Talked to the doctor on the phone so we don't have to go all the way back to San Jose. According to the doctor, there are 3 types of Sleep Apnea: Obstructive (something blocking the airway), Central (the brain tells him not to breathe) and Hyperventilation (normal breathing but too shallow and too little oxygen).
The test was administered with extra O2 on at all times. The pulmonologist actually wanted the O2 to stop to get a baseline but it didn't happen. It seems like we don't have to worry about Obstructive apnea as Logan did fine in that area. His O2 saturation didn't fall that much. He has some mild to moderate Central apnea when his O2 dropped down to the high 80s and low 90s (it should stay above 95). The serious problem is in the third category. During his REM sleep, his O2 dropped down to the 60s-70s and at one point down to 58. These episodes lasted between 1-3 minutes, which were considered pretty long. This might be due to a combination of the Central Apnea and his Hypotonia (weak muscle tone). The doctor recommended increasing his current O2 supply to 1 liter instead of 0.5.

We're definitely NOT happy with the sleep apnea test results. We're hoping the test would show that Logan would be fine and we could get rid of his cannula. Unfortunately, it showed that he needed more O2.

Neurology Appointment (1.21.09) -
Neurologist commented that Logan appeared 500% better and stronger than she last saw him at the hospital. His muscle tone has gotten stronger and his cries were definitely a lot louder, compared to his unusual silent cries before. I asked about his previous special blood tests done at the hospital as some of them took a while to get the results back. And as usual, everything came back normal. I also asked about his Central sleep apnea and what we could do. There isn't much we could do at the moment. We talked about seizures which might be the cause of it. However, Logan has his MRI done and also different scans, and all came back normal. I also didn't notice any seizure-like movements from him either. The neurologist basically laid out 3 choices: 1) wait it out to see if he gets stronger and better and grows out of it, 2) do another blood test to weed out some more possible diseases/illnesses as we still don't know what causes all this, and this blood test I think is to test his Mitochrondria (or something like that), 3) do a more invasive muscle biopsy to see his muscle tone and cells. I have opted for him to wait it out and not do anything for the time being. Knowing his blood test history, I have a feeling the tests will come back normal again. We will evaluate his progress in a month and then decide on further action.

Pulmonolgy Phone Call (1.21.09)-
After receiving the sleep apnea test results, the pulmonologist called me to discuss the findings. We have decided to up his O2 level at home to 0.75 instead of 1 liter recommended by the sleep test doctor because we're worried that with such a strong push, Logan's lungs might get lazy and won't be working as hard. When he's awake, we'll keep it at 0.5, and when he's sleeping, we'll keep it at 0.75. The pulmonologist also wanted Logan to get a blood test done to test for a gene that can detect if he actually has Hyperventilation or Central Hyperventilation Syndrome. The blood would have to be Fedex or UPS over to a lab in Chicago for the results. This needs to be done soon. She also wanted Logan to get his heart checked as the lungs work closely with the heart. This would be an easy test, just to put some probes on his chest for 15 mins or so (provided Logan doesn't scream and pull everything out). We'll have to see when the Cardiologist has time to do that and the Pulmonologist will make the referral.

Pediatrician appointment (1.22.09)-
Went for Logan's 2-month well baby check-up. We talked more about his acid reflux, which is actually more of a concern to me as Logan still looks very uncomfortable during and after feeding. The change of medication seems to have worked and I'll just keep the pediatrician updated when there's a need to up the dosage. I asked about tummy time. Logan hasn't been doing any tummy time. I asked the Pulmonologist this yesterday and I am asking the pediatrician again. I know he needs to do it to get his neck muscles stronger, thus improves his breathing. On the other hand, he just does a face plant on the boppy pillow or our chest, and I am worried he can't breathe and his cannula is poking his nose. The pediatrician said it's important for him to do tummy time, but definitely has to be supervised. Logan won't like it, but we gotta do it. I asked about an infant carrier. I know Logan would like a more sling-type or wrap type carrier but then his neck would flop down, thus closing his airway. The pediatrician agreed that a front carrier like the Baby Bjorn or Ergo is better for his breathing and acid reflux, but Logan might need some time to get used to that. We talked more about his medications (dosage and side effects), his acid reflux, sleep apnea test results, feeding and all of his specialists appointments. Overall, Logan has been doing well as he is gaining weight steadily. He finally reached the 11lb mark, weighing 11 lbs and 6 oz, 22.5 inches tall!! Logan also got his 3 shots of immunization that day. Poor baby but he only cried for a few seconds. That's my boy!

Blood Test Episode (1.22.09)-
So after the pediatrician appointment, we went to the lab to get the special blood test done so that it can be sent to Chicago asap. Came to find out they needed 3 tubes of blood, and because one of them is a special one, it's not done in Daly City and we had to go to the lab in SSF. No problem, it's only a 5-min drive so we packed up and left. When we got there, they double-checked the type of blood test because it's so rare and then proceeded to try to do it. Took a while to find the vein (couldn't be with a heel prick). Poked him once on the upper arm, no blood came out. Poked him again close to his wrist, only a little blood came out and then clotted. Their rule is to only do it twice and they're not allowed to do it again. Of course, they recommended us to go to SF to get it done, as they have more experience and staff to draw blood from infants. I was hoping we could avoid the trip to SF, but now we still have to go there, plus Logan has to be poked at least once more. On a positive note, Logan was a fighter and a champ. He cried and fussed when they were looking for a good vein, probably because of the discomfort of the rubber band on his arm. But when the needle was actually in there, he didn't cry at all. We originally planned to go to SF next Wed as it's Chinese New Year on Monday, and we don't want him to start the new year with a blood test. But after talking to the Pulmonologist (she called after she heard of the blood test fiasco), it's best to get it done ASAP. So we're heading up to SF on Monday to get it over with.

When I talked to each of the doctors listed above, I asked them all the same question. Why did Logan's O2 saturation go down so low, as low as in the 50s at one point, but when he was at the hospital for a month, he never went down that low (or at least I didn't know)? How come his condition seems to have worsen, yet he's growing bigger and stronger each day? None of the doctors could really give me an answer. It might be the machines, it might be because these things change all the time, nobody knows. We still don't know what causes all this fuss and we're trying very hard to find a diagnosis.

Logan's diagnosis for now are: Hyptonia, Laryngomalacia, and Tracheomalacia.

More appointments to come in the next few months: Audiology for hearing tests, ENT for feeding and possible cleft palate, Cardiology for the echocardiogram, and recurring appointments with all the specialists.