Trying to get Updated

Posing by T-Rex...Caleb couldn't take his eyes off that big dino!
The huge T-Rex....the best one of all!
Look...the INCREDIBLES!
Batman and the little INCREDIBLE
...our Family...

Caleb will hopefully be starting school soon! I had an IEP meeting with the staff at Liholiho Elementary a couple weeks ago and everything is ALMOST all set for him to start. I also went to the school to talk to the class and introduce Caleb to them with pictures. Some of the first grade girls said "he's cute!" They were very curious to learn more about him and he is excited to make new friends. Patrick will be the one taking him to school and I will also go here and there. Our biggest fear of sending him to school is him getting sick a lot. And I just found out there was a kid in his class that was confirmed to have H1N1. But they were quick to let me know about it. I'd have to admit that I have a big fear whenever he seems to be getting sick now. But regardless, I know that him going to school will help him in many ways.

Caleb has been doing home schooling. He has a wonderful tutor that comes from his school everyday to work with him and trying to get him to where his classmates are at. He's great with Caleb...very encouraging and patient.

After Caleb's recent stay in the PICU, they increased one of his medicines, phenobarbital, which is a seizure med. I didn't really understand the point in doing that and tried to fight with the doctor on it but didn't win the battle. When we brought him home however, he was very groggy and sleeping a lot for a few days following. We took him back to the doctor and they lowered it again 25%. But still, he was at double the dose from prior hospitalization. So he took another blood test recently and they lowered his morning dose again. It seems that it made a huge difference since. And we will check again in another two weeks and I'm praying we can lower it again and again. (He doesn't have seizures) ...this last one was a febrile seizure. And that's not the same.

Caleb and I attended a speech therapy group at UH last Saturday. It was great! I really enjoyed it and think it will be good for him.

We had fun dressing up as a family. We were THE INCREDIBLES! Batman helped us out that evening as Caleb slept the entire night away while we were out! He started to go to bed even earlier again. Usually he is asleep by 7pm.

Brandon and I took the boys out to watch the fireworks tonight out on the beach and Caleb fell asleep when we were on our way and missed the show. But it was still nice to have him with us...poor guy had to sleep in his chair though. The last time we went down there as a family was before Caleb's accident. Micaiah was probably a month old or maybe a little more. We laughed as we talked about that night. At that time, we weren't sure where they set the fireworks off and Caleb and I were on the sand. When it started it startled us both. Caleb jumped into my arms and was frightened by the loud noises. He burried his face against me with his hands over his ears. It took some time before he actually watched it. At the time, we were worried about Micaiah. We knew he could hear but all we knew about his "condition" was that he could possibly have problems later on. So we were worried about him being around the loud fireworks and Brandon jumped back into the car with him where the sound was more muffled. Tonight was fun and we look forward to making that a weekly family event for us with dinner on the beach too! (weather pending)

I realize this post isn't very well written. It's late and I realized that I haven't posted for quite awhile. So just wanted to touch up on what's been going on lately! God Bless. And I'll prepare the next one a little better. :)

Home Sweet Hom

Caleb was discharged from the hospital today. I was a little uneasy about taking him home just yet but at the same time very happy that he would be back home and our life could get back to "our normal."

Caleb did fine when we got home. He slept soon after we got him settled into his bed, on the trach collar, and a little bit of 02. Just before our nurse was getting ready to leave, he started to act all funky again. Of course, she knew all the many things to try to get his 02 steady and his heart rate more normal. I was terrified by it all. Our wonderful nurse Susan said she'd stay until he was okay. It took awhile...till about midnight. Patrick came in to relieve her. I did not feel comfortable at all so Patrick said he'd come and sleep at our house and take over...after working 12 hours today at the PICU. I'm comfortable now, as Patrick is in Caleb's room with him and Caleb is actually doing a lot better since Patrick walked in. I think he wanted a sleepover?

We are beyond blessed by our nurses...who are much more than that. Family is what they are...

The first few nights Caleb stayed in the hospital, his nurse Susan was working the night shifts so we were able to sleep at home during the night as she watched over to him. It was so nice to have her there with him! Patrick also called in and picked up a couple of shifts while Caleb was in the PICU.

So I'll continue more posts later as I'm going to get some sleep while Patrick is here for the night. But I just wanted to share that HE IS HOME! (and brag about Caleb's aunty and uncle) :)

In the PICU after a big Scare.

I had started my new post almost two weeks ago. Loading pictures and writing about all these great things happening! Well, I never finished and posted it. But I'll continue that one later.

On Saturday morning Caleb came down with a fever. Micaiah had been sick the entire week before. I called their pediatrician and we had planned to take Caleb in on Sunday to be tested for flu. But on Sunday morning, Caleb's fever must have spiked. My mother in law stayed over the night before and was in Caleb's room. I was awoken frantically and when I ran into Caleb's room he was blue already. He had been on two to three liters of oxygen the day before. I grabbed the ambubag (once more), and started to do CPR. Caleb was seizing...his eyes were rolling, he was shaking, lips blue, and face pale. CPR wasn't helping enough while he was seizing. His O2 dropped down all the way to 21! As I continued to perform CPR I cursed Satan and called out to God. It seemed like he was seizing and blue forever but it was probably not that long. When he stopped his eyes slowly closed and his body became completely limp. My heart dropped. I thought we lost him. (Looking back now I realize that, that thought was silly. His monitor showed that he still had a heartrate and a little bit of 02.) But I wasn't obviously all there. After what felt like forever, he opened his eyes again and started breathing. I was still doing CPR at this point. His 02 went back up to the 90s with help and I quickly hooked him back up to the oxygen on 5 liters. Right after we got him stable the firefighters flew into his room frantic. They took over and we headed to Kapiolani in the ambulance.
They discovered that he had pneumonia after taking a chest xray. The flu test showed negative for influenza A and B. His white blood cell count was high. But all the other blood tests didnt show anything. I think he had walking pneumonia that week...we just didnt know because he seemed fine.
Today is day 4 that he is in the PICU. They put him on cpap and at first he fought it. So they just put him on trach collar with some oxygen. But later Sunday night he had to be put back on cpap. So they are now weaning him off of cpap and he does well when not on it. As I am typing this, Caleb is in the OR. His trach doctor wanted to do a bronchoscopy on him where they go down the trachea and into the lungs with a long camera. They will also dialate his trachea if need be in order to put a bigger trach in. Caleb's trach has never been there as a respiratory device but for controlling his secretions. It was a hard decision for us to make but we decided to go with it and felt comfortable with our decision as it will be better for him in the long run and possibly help him to get his trach out completely later.
He's such a strong boy! He wasn't scared when I told him what was going to happen today. I wish I had as much courage as him! He sees Jesus and angels all around him all the time...I know it!
He should be out of OR now so we are heading back! I will try to keep you updated as I can!