It's just a scare. Make it a scare! False Alarm!

Dear Logan,

What a day.  Finally get a chance to relax since 4 a.m. this morning.  Let me tell you what happened today.

Your brother woke up at 4 a.m. crying in pain.  He complained that his leg was hurting.  So  I went to his room, laid down in bed next to him and gently massage his left thigh.  He slowly went back to sleep, and I went back to my room.  Not too long later, he cried and screamed in pain.  Aidan has a pretty high tolerance of pain.  If he's crying like this, he WAS in pain.  I went over and slept with him, comforting and massaging his left leg again.  He woke up periodically crying in pain.  I knew I would have to take him to the doctor when the sun came up.  This crying, massaging, soothing lasted until about 6:15 a.m.  Daddy was smart enough to suggest Mortrin.  Doh!  Why didn't I think of it at 4 a.m.??  We gave him some Mortrin and called our "trusted" Kaiser.  I called Kaiser way too often within the last 5 years as a parent.  We're lucky enough to get an appointment with the pediatrician at 10:50 a.m.  Phew!

The next few hours, I busied myself with calling work, calling your brother's school, sending work e-mails and such.  It's really too bad because today was Aidan's first field trip from school, and they're going to a pumpkin patch.  I told him that I would take him to another pumpkin patch to make up for it.  But he was sad coz he's been looking forward to taking the school bus!  Well that's what I told him before that he would be taking a school bus for field trips.  He then dozed back to sleep, and periodically whimpered and cried about the pain, and demanded me to scratch his big toe, side of his leg, etc.

Getting him in and out of the car was an adventure at first.  He had pain extending and bending his leg.  It was quite an ordeal getting him buckled up in the car seat, and then transferring him to the umbrella stroller (Thanks to the Cheung's for the stroller during our Disneyland Trip).  Got to Kaiser and waited for the doctor without much adventure.  Dr. M examined Aidan, and believed it's not the leg that was the problem, but his hips.  So, she ordered blood tests to rule out any infection, and an X-ray to check out his bones.  She said sometimes kids just hurt for a few days, and then got better by itself.  Sometimes, they get some sort of arthritis after a cold, and the pain will go away.  But just in case, she ordered those tests and x-ray to rule out any other problem.

Aidan's not even 5 years old, and he already had blood work done several times (when he was dehydrated/undernourished at 4 days old), and two X-rays (one when he fractured his skull at 10 months old).  How many more X-rays do I need to see him go through??  Aidan was a real trooper.  I've always been very proud of him when he had to get his immunization shots.  This time was a little different.  Daddy had to transfer him from the stroller to my lap, gave the technicians his left arm and got blood drawn.  He whimpered a little with the initial poke, but I was able to distract him with his toy.  I am so proud of him!

Then off to Radiology.  The all-too-familiar Radiology department.  I remember passing by there very often on the way to see you when you're at the hospital.  Once the doctor mentioned it's by the hospital wing, I immediately knew where it was.  Not a good feeling.  So, we got there and it's close to lunch time.  Luckily, we didn't have to wait for too long and was called in to change Aidan's clothes.  Getting the x-ray done wasn't too bad.  He found the fun in staring at the mirror to look at his reflections and make silly faces.  He was calm and listened to directions.  A trooper again!  I was relieved.

*waiting to get his X-ray*

Then off we went back to the pediatrician's office. I had to admit I was a little concerned when we're in the waiting room.  I thought about little Alan, and was afraid Aidan might have some sort of cancer.  I thought of you, and worried Aidan might also have a high percentage of mutated mitochondria that caused all this.   We waited for about 30 minutes and was seen by Dr. M. again.  She said she received 2 of the 3 blood test results and everything came back normal.  She's not concerned about the other test.  It appeared there's no infection.  She looked at the X-ray and didn't see anything abnormal.  But she wanted to confirm with the Radiologist before officially said everything was fine.  She suggested us to go home and would contact us after speaking with the radiologist.  So we left Kaiser at around 12:45 p.m.

I finally got the call back from Dr. M at around 3:45 p.m.  She told me that the Radiologist saw something in Aidan's hip bone that might be of concern of a problem that is usually seen in kids 10 years and older.  She also consulted with the two Orthopaedic surgeons, and both of them were NOT concerned.  Am I concerned?  Heck Yeah!  I asked Dr. M if a history of Leigh's Disease would cause the problem.  She said it had nothing to do with it.  Minor sigh of relief here, because I know everything linked to a Mitochondrial disease is definitely BAD news.  So for now, we would just monitor Aidan's pain.  If it got worse and he has a fever, then we need to bring him to the ER.  If the pain lessens and he can walk again, even with a limp, then we're going towards the right direction.

Please pray for your big brother and see that he gets better soon.  We plan to all come to visit you this weekend.  But now that he can't walk, we will probably stay home all weekend.

Love you,

Mommy

Semi-real time blog while at the hospital

8:45 a.m.- arrived at hospital and the technician was putting EEG probes and video on Logan. So I went outside while that was being done.

9:15 a.m.- came back inside and the nurse and technician said the EEG will be on for 24-hour monitoring, instead of just 20 mins. When an episode happened, I can inform the nurse immediately and she can note down the time and look at the EEG monitor.

9:30 a.m. - met with the Pediatric GI doctor. I told him again about his acid reflux history and what the episodes look like. He said acid reflux could cause the breathing problems, but usually not the stiffening of the body. For now, we will do the EEG and if we can't detect anything, they will put a pH probe in him (after stopping drugs). He said from what I have described, it didn't seem like it's acid reflux, but we want to be able to rule out everything.

10:00 a.m. - doctors came in for rounds. He had one episode at around 5 a.m. Will continue to monitor with EEG, and will decrease the high flow to see how he can tolerate it. Will talk to ped neurologist about it. I have also requested to get a second opinion from the ped neurologist since we are down here anyway.

10:10 a.m. - called Hank and updated him. Ped neurologist came in to look at EEG monitor and to check on him. Asked if a MRI is better but he said to look for seizures, EEG is the one to go.

10:15 a.m.- Nurse turned down flow to 2 L and Logan finally went to sleep. The high flow really bothered him as air was pushing into his lungs.

10:20 a.m. - He had an episode!!. They were figuring out the technical difficulties of the EEG machine to see if the episode was recorded. Freaked me out because I didn't get to him early enough and he turned pretty dusty. Usually I was able to get to him sooner once I heard the ding ding of the machine when his respiration goes down. As I was typing this blog, I didn't get to him fast enough. He's ok now.

10:40 a.m.- Ped neurologist and tech are looking at the EEG monitor to figure things out and to see if anything is being captured.

10:50 a.m.- Both the tech and the neurologist said it's not a seizure. I asked if we should wait for another episode. They are pretty sure it's not and it's clear cut. Grr... he said it might be respiratory. Neuro would like his probes off so that he could examine him a little better. He's going to talk to the other doctors and then come back and talk to me.

11:42 a.m.- just finished talking to the Ped Neuro. He did an exam on Logan, asked some questions and is off looking at his huge medical record. Logan is awake now after the examination, moving his arm and legs, thus making it difficult to monitor his oxygen saturation.

12:15 p.m.- Pulmonologist stopped by to see him. Suggested trying the C-pap for Logan to see if it is going to help with his breathing when he sleeps. Might do bloodwork that neurologist has mentioned. Asked pulmonologist if caffeine that's being used for preemie might help with his apnea. She said it might, but caffeine also worsens acid reflux.

1:30 p.m. - Came back from lunch and nurse said Logan had another episode. He is currently at 0.85L of oxygen and changed back to regular nasal cannula. The cannula doesn't bug him as much now. Gave him a nice wipe of the stinky sour neck and changed bedding.

2:00 p.m. - He's getting a little sleepy but this is always when we have to worry about him since his episodes seemed to happen when he's asleep.

2:15 p.m.- another one. I was looking at the monitor and saw that his RR was 17 but the wavelengths show that he was breathing VERY shallowly. Then his face changed color again, eyes opened briefly, needed us to prop him up and open his mouth. He just won't breathe for whatever reason. And, he went right back to sleep as if nothing happened.

4:08 p.m. - just finished talking to pediatrician about Logan. The urinalysis came back from the sample taken on the 3rd and it seems like he has a bladder infection. Still have to wait for the culture to see what type of bacteria. For the time being, Logan will be receiving antibiotics. It seems like his kidneys are ok but he will get an ultrasound just to be sure. He will also get a VCUG (shoot dye up in his bladder through a catheter into his little pee pee and then do an x-ray). For the time being, all medications will be stopped to prepare for the pH probe on Monday. He will resume feeding. If his acid reflux gets worse, then it shows that his reflux is present and we probably don't have to do the pH probe. The probe is supposed to be left in him for 24 hours, and if he has any episodes while the probe is in there, they will match the time to the activity that the probe shows. Logan will also get the Bi-pap tonight with(without) oxygen to see if it is going to help with the episodes. The bi-pap works similarly to the high flow oxygen that he was getting last night. The ped neurologist will come see him again tomorrow to do a more detailed exam and might do a MRI, if necessary. Of course the concern is still his apnea while sedated for the MRI. I mentioned the hearing test that he's scheduled to do on the 19th, and if he's going to be sedated for the MRI, might as well do the hearing test as well to kill two birds with a stone. Pediatrician will double-check on the type of hearing test. I also asked about the radiation from all the x-rays and scans that he has received and if it's going to be bad for him. Ped said that the CT scan and x-rays are worst, but the radiation is just as bad if you're out in the sun at the beach. Since he didn't have many CT scans in a short period of time, I shouldn't worry about it. We also talked about the different symptoms and his laryngomalacia and hypotonia.

4:30 p.m.- had another one but I was right there to catch it. Staring at the monitor and his face at the right time.

4:55 p.m. - Mommy's leaving to pick up big brother from school.