Something is definitely wrong with Logan.. but what is it?

At first, I was planning to do a happy blog on Aidan's preschool days. Before I could do it, I now have to write about Logan, who is hospitalized at Santa Clara Kaiser again.

Yesterday at around noon after I finished feeding and burping him, I had him in my arms while I was watching tv. Then suddenly, I felt his whole body tensed up. When I looked down at him, his face started to turn dusty and lips were turning pale. I immediately sat him up and pat him on the back. He was still tensed up in a boxer position with his knees up as well. I then put him on my shoulder and pat him some more. Then I felt his body loosened up and he let out a breath. Of course, this scared the heck out of me. Unfortunately, episodes like these happened for the rest of the afternoon. After two episodes in less than 30 mins, I called Hank and called Kaiser. While I was on the line with the operator, Logan did that again. The advice nurse checked in with the doctor and suggested us to go to the ER. Since Logan was fine at that time I was talking to her, they did not recommend calling 911, but to find someone to be with him while I drove. However, I was so scared that he did that again while I was driving and there's really no one who could come along with me. I ended up calling 911 and the operator was with me the whole time until the Fire Department arrived. I recalled my voice was shaky when I talked to her and she had to repeat a few questions several times.

The fire department arrived within minutes. Thank you! They hooked him up to the monitors, asked me some questions and took Logan to the ER in SSF. I dressed, called Hank, and immediately headed to the ER. When I got there, the nurses were already putting probes on him and taking his temp. I saw him turning dusty again while they were doing it. A series of blood tests were done, CT scan, chest X-ray and they even had to put a catheter in his you-know-where to draw urine out (that was the first time he had it done and was painful to watch). He was probably at the ER from 1-5 p.m. He turned dusty almost throughout his ER stay. The worst period was when he had the episodes every 4 minutes. It seemed like he opened his eyes, gazed into space and then it happened. We wondered if he was having seizures. At around 4:15 p.m., Hank and I went out for the snack while waiting for the Santa Clara EMT crew to come up. When we got back, the nurse was holding Logan and his episodes miraculous stopped. Even after he was transferred to Santa Clara Kaiser, those episodes disappeared. While Logan was being transported to Santa Clara, Hank and I went to pick up Aidan from preschool and then we all went down to the hospital to see Logan.

At first I was wondering if I was imagining all this. I could tell from his face that it was coming even before the monitor beeped. I was able to stimulate him before he turned all purple on me like his last hospitalization. But no, I wasn't imagining them. They all saw it. I remember even asking Hank if I was imagining and if he saw Logan changing color.

But since around 4:30 p.m. and up until we left the Santa Clara Kaiser at 8 p.m., he didn't have any episode anymore. They were doing some more blood work, and another chest x-ray. I have requested him to get an EEG done on his head (he was going to get one anyway in the next couple weeks), to see if there's any abnormality going on. For some reason, it seems like the brain just tells him not to breathe. Very likely, they will find nothing, and Logan will be discharged and then something bad is going to happen again and we will repeat the whole vicious cycle.

Something is wrong. But after all this time, we still don't know why. The ironic thing was, we just went to see Logan's neurologist yesterday and everything was peachy then! I know the brain is a very complicated body part that we don't know everything about it. But, I want to know what's wrong with my baby. It's been way too long. We might not be as lucky as we have been in the future.

Another horrible night for Logan - ER & PICU

Really need to be careful what you wish for sometimes. I wished for 8 hours of uninterrupted sleep, and I am getting that tonight, but for very bad reasons.

Last night at around 7:30 p.m., I was feeding Logan as usual. He suddenly turned very grayish purple and was not moving. I have not seen him turn this color since when he was 2 days old and had the episode at the hospital. I immediately called for Hank and we both tried to wake him up. I patted his back and lifted him up to my shoulder. Thank goodness he was OK. We turned up his oxygen level to 1 L and laid him down to rest, while we recovered from the shock and contemplated whether to take him to the ER or make an appointment to see the pediatrician the following day. 10-15 minutes later, he suddenly turned grayish blue again and we did the same thing to get him to breathe again. This time, we cranked up the oxygen to 1.5L instead of his normal 0.75L. Without hesitation, I called Kaiser and was instructed to take Logan to the Emergency Room. I immediately finished my dinner and I know from experience, a trip to the ER lasts hours. We have decided that I would take Logan to the ER, and Hank would stay with Aidan and tried to contact grandma to see if she could take care of Aidan.

I arrive at the ER at around 8:30 p.m. and Logan was seen within 10 mins. I reiterated the episodes (over and over again for the next 24 hours). Hank was able to get a hold of his mother to have her take care of Aidan, and come to the ER to meet with me. We were told that the Kaiser at SSF does not have a Pediatric unit and Logan was transferred to the Pediatric unit in SF. Logan had another minor episode while he was in the ER, and two more during the transport to SF when he was in the ambulance. I rode with Logan in the ambulance while Hank headed home because he had to work the following day and to take Aidan to daycare. We were lucky enough to find last-minute daycare because our usual provider is on vacation today.

Logan was admitted at around midnight and I told everyone about Logan's medical history and the events that happened that night. More tests were done on him (flu, RSV, blood count and I requested a blood gas as he has to do it anyway for the pulmonologist). Throughout the night, Logan had a few more desaturations and his oxygen level dropped to the 70s. One of his episodes was severe enough (dropped down to 18) that it lasted a minute, and needed a team of nurses to revive him. We kind of concluded that Logan might have a cold and his sinuses were blocked, thus making it hard for him to breathe. His sleep apnea certainly does not help the situation. We kept on suctioning the mucous out of his nose.

This morning, I was told that Logan needs to be transferred to the Pediatric Intensive Care Unit either in Oakland or Santa Clara, as he needs more individualized attention from the nurse. In the normal Pediatric Unit in SF, it's hard for them to provide such service. Oakland's PICU was full, so Logan was transferred to the PICU in Santa Clara. I was actually relieved it's Santa Clara as I could tag along with Hank when he goes to work in Sunnyvale everyday to see Logan. Oakland is just really out of the way. For the transport to Santa Clara, Logan had to stop his feeding and put on IV, just in case something happened during transport and the medical team could give him the necessary medication. Besides, after feeding seemed to trigger some of these episodes.

Hank came to pick me up at SF and then we both went home after finalizing the decision to transfer him to Santa Clara. I then drove down to Santa Clara Kaiser to meet up with Logan. I was told casually that during the transport, Logan was being "naughty". I believe they did not want to worry me, but in reality, Logan did not like what was happening and refused to breathe. They had to manually give him oxygen during the transport. However, after arriving at Santa Clara Kaiser, and throughout the remaining of my stay, his oxygen saturation was good and did not dip down to any alarming level. He was giving a new nasal cannula and a different type of oxygen set-up, allowing his lungs to open up and to breathe better. He will continue to be on IV for the rest of the night, while being closely monitored. We do not know how long he would be staying at the PICU. He needs to have at least 24 hours without any episodes, and this might take a week or even more. For the time being, nurses continue to suction his nose for mucous, as that appear to be a big problem. Unfortunately, all of us at home are sick, and I KNEW Logan could not get sick because of his condition. Yet he still does. I am worried that he would have to go through such ordeal every time he gets a cold. We might not be this lucky every single time.

I just have to complain here. How can Kaiser in SF not have a Pediatric Intensive Care Unit??? Come on, it's San Francisco we are talking about here! Unfortunately, I've been to enough Kaiser in Northern California (SF, Oakland, Santa Clara, San Jose) to notice that Santa Clara Kaiser has the best layout with the medical offices and hospital buildings attach to each other and with plenty of free parking. Some other Kaiser has different departments all spread out and it's really inconvenient.

Please keep Logan in your prayers. We thank you in advance for that, and for all of your well wishes.