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.
Showing posts with label apnea. Show all posts
Showing posts with label apnea. Show all posts
Monday, March 9, 2009
Saturday, March 7, 2009
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.
Friday, March 6, 2009
Still the same...
Logan had a few episodes last night again. He didn't need to be bagged for breaths, but did need stimulation to come back up. He was even on the Bi-pap machine with the annoying nasal prongs he had last time. I came in today and saw his red nose being poked by the prongs. I was able to feed him 2 oz of formula just now as he was wide awake when I came in. He just fell asleep and I would be watching him and the monitor like a hawk now.
Action Plan for now:
1. pH probe scheduled for Monday - continue to stop all drugs.
2. consult from Patient Care Coordinator - I expressed concerns that insurance doesn't cover an oxygen monitor and I am worried he might have more episodes at home. We might not be so lucky that every time he has an episode, i am there to help him. The apnea monitors don't work, so we need something to check his oxygen saturation at home.
3. Physical Therapy consult - to teach me how to position him or play with him, so as to build his muscle strength.
4. Ped will check in with pulmonologist to see if he needs the bi-pap machine still.
5. Ped is waiting for the Hearing Center to call back regarding the hearing test for Logan.
I asked the ped and the neurologist whether these episodes are going to cause damage to the brain. They both assured me that because his episodes are short and all lasted less than 1 minute, it should be fine.
So a social worker came in just now to ask me about the oxygen monitor and if Logan has filled out paperwork for SSI or Medi-cal. I told her we haven't done any of that. She is calling the California Children's Services to see if Logan qualifies for Medi-cal since he has a chronic condition, and Medi-cal might help with the oxygen monitor.
11:05 a.m.- Had an episode. I knew it's coming. It always comes after he feeds and then goes to sleep. I saw those wiggly wavelengths and the color of his lips slowly change. Didn't need to be bagged and came back himself. Episode lasted less than a minute.
11:30 a.m. - Social Worker came back and said she talked to the CCS coordinator and we don't qualify for Medi-Cal because we make too much money (over $40k). Doh! We probably have to pay out-of-pocket for the oximeter. Oh well, just $500 Ha! Well, whatever it takes to make sure he's ok.
12:15 p.m. - Pulmonologist stopped by to see how he's doing. Told her the Action Plan and updates. She suggested keeping the bi-pap for another day to see since he's on antibiotics and it takes him a while to get used to it. I showed her the oximeter that was recommended to me by my cousin and she said it looks like what they have at the clinic. Seems like a good one.
1:00 p.m. - came back from lunch and nurse said the tech came to do the ultrasound of his kidney just now. Don't know results yet. Occupational therapist stopped by while I was feeding Logan. Suggested another nipple for him but it seems like what we've been using is more suitable and he's familiar with it.
2:15 p.m. - Chaplain stopped by. Chatted a little and said a prayer for little Logan.
2:18 p.m. - Logan is asleep now and I am on the watch for any episodes. He seems to always have those when he falls asleep after feeds.
2:55 p.m. - almost had two episodes within the last 15 mins. I saw the wavelengths of his respiration and was able to tap him a little on the chest for him to let out a breath. Whew! Didn't turn dusty this time. But it's just because I so happened to be looking at the monitor.
3:15 p.m. - Had an episode and this time it was a longer one and he needed to be bagged. Now he's sleeping like a baby again. One thing good is the new nurses taking over the new shift got to witnessed his episode and to see how his face changed. Oh, and he pooped after the episode. Everyone saw "it" coming out!
4:15 p.m. - started feeding Logan since he's awake. I want to be able to feed him before I leave because I know I can get him to eat. It's pretty hard to feed Logan.
5:00 p.m. - Leaving to pick up Aidan. Let's hope Logan will be fine.
Action Plan for now:
1. pH probe scheduled for Monday - continue to stop all drugs.
2. consult from Patient Care Coordinator - I expressed concerns that insurance doesn't cover an oxygen monitor and I am worried he might have more episodes at home. We might not be so lucky that every time he has an episode, i am there to help him. The apnea monitors don't work, so we need something to check his oxygen saturation at home.
3. Physical Therapy consult - to teach me how to position him or play with him, so as to build his muscle strength.
4. Ped will check in with pulmonologist to see if he needs the bi-pap machine still.
5. Ped is waiting for the Hearing Center to call back regarding the hearing test for Logan.
I asked the ped and the neurologist whether these episodes are going to cause damage to the brain. They both assured me that because his episodes are short and all lasted less than 1 minute, it should be fine.
So a social worker came in just now to ask me about the oxygen monitor and if Logan has filled out paperwork for SSI or Medi-cal. I told her we haven't done any of that. She is calling the California Children's Services to see if Logan qualifies for Medi-cal since he has a chronic condition, and Medi-cal might help with the oxygen monitor.
11:05 a.m.- Had an episode. I knew it's coming. It always comes after he feeds and then goes to sleep. I saw those wiggly wavelengths and the color of his lips slowly change. Didn't need to be bagged and came back himself. Episode lasted less than a minute.
11:30 a.m. - Social Worker came back and said she talked to the CCS coordinator and we don't qualify for Medi-Cal because we make too much money (over $40k). Doh! We probably have to pay out-of-pocket for the oximeter. Oh well, just $500 Ha! Well, whatever it takes to make sure he's ok.
12:15 p.m. - Pulmonologist stopped by to see how he's doing. Told her the Action Plan and updates. She suggested keeping the bi-pap for another day to see since he's on antibiotics and it takes him a while to get used to it. I showed her the oximeter that was recommended to me by my cousin and she said it looks like what they have at the clinic. Seems like a good one.
1:00 p.m. - came back from lunch and nurse said the tech came to do the ultrasound of his kidney just now. Don't know results yet. Occupational therapist stopped by while I was feeding Logan. Suggested another nipple for him but it seems like what we've been using is more suitable and he's familiar with it.
2:15 p.m. - Chaplain stopped by. Chatted a little and said a prayer for little Logan.
2:18 p.m. - Logan is asleep now and I am on the watch for any episodes. He seems to always have those when he falls asleep after feeds.
2:55 p.m. - almost had two episodes within the last 15 mins. I saw the wavelengths of his respiration and was able to tap him a little on the chest for him to let out a breath. Whew! Didn't turn dusty this time. But it's just because I so happened to be looking at the monitor.
3:15 p.m. - Had an episode and this time it was a longer one and he needed to be bagged. Now he's sleeping like a baby again. One thing good is the new nurses taking over the new shift got to witnessed his episode and to see how his face changed. Oh, and he pooped after the episode. Everyone saw "it" coming out!
4:15 p.m. - started feeding Logan since he's awake. I want to be able to feed him before I leave because I know I can get him to eat. It's pretty hard to feed Logan.
5:00 p.m. - Leaving to pick up Aidan. Let's hope Logan will be fine.
Friday, January 23, 2009
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.
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.
Saturday, January 10, 2009
Logan's Sleep Apnea Test
Logan had his appointment with a Pediatric Pulmologist last Wednesday. Everything seemed to go well. Even the dr. noticed Logan's weight gain and his strength. She increased the dosage of his medication as he's getting heavier. She also made a referral to a Pediatric ENT specialist to look at his upper palate, which might be why he was having a difficult time feeding. Another big thing that came out of the appointment was the sleep apnea study referred for Logan. In order for him to be off his oxygen, he had to go through the test to make sure his oxygen saturation remains in the 90s.
The following night, Mommy stayed with Logan at the Kaiser Sleep Medicine center in San Jose. The stay lasted from 7 p.m. to 6 a.m. Thank goodness for carpool lanes, if not the commute would be hell. During the study, 21 different sensors were put all over his body and his head. Oh my, did Logan hate this. He was wrapped like a little Frankenstein and it annoyed the heck out of him. He was struggling and crying for 1/4 of our stay there. Mommy had to try her best to rock him to sleep, if not, his movement would impair the test results. The room there was very nice. It felt like a nice hotel room. There was a nice crib, double-bed, flat screen tv, internet connection, and video games. Of course, all we did was trying to sleep. When we left, Mommy asked the nurse how were the results, and she said it would take about 2 weeks to get them. But she saw some pretty low numbers, in the 70s, partly because Logan was moving around. Mommy personally feels that Logan is ready to be off the oxygen. Let's hope the doctor won't interpret the 70s as a bad sign, because if Logan was nice and quiet and not moving around, his numbers should be up in the 90s, if not, high 80s.
Aidan also had his 3-year old check up last Thursday. Everything went well and he's now 39 inches tall and 35 lbs. He was being his curious little self at the office, as this is a new doctor to him. We have chosen the same pediatrician for both Aidan and Logan. We talked about his refusal to be potty-trained (dr. said to leave him alone for a while and try again) and his sleeping habits ( to walk him back to his bed if he climbs up to ours). It would be difficult to fight with Aidan on both issues. Potty training, we really couldn't force him. If he doesn't want to go, what could we do. A dirty diaper doesn't even bother him. With regards to sleep, it's going to be an uphill battle especially now that his bed is in our room. It would be too easy for him to climb up to our bed. We couldn't let him stay in his old room, as Logan has his big oxygen tank there, and we don't want him to wake up every time Logan cries.
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