Saturday, July 4, 2015
He was fine that night. The next day I left the other kids with my sister (She saved the day) and I headed back to Children's with Titus. My Dad met me at the ferry and helped out. Which was great because it was a long day and having him play with Titus helped me be able to learn.
Titus has Addison's disease, which is extremely rare. His Adrenal glands have failed and they can not be repaired. He will be taking medication for the rest of his life for it (three times a day). We are also armed with syringes for emergencies and he will get to wear a medical alert bracelet. We still have lots to learn and there are still about 10 labs out that will tell us more. What we do know is that the damage has been done to his adrenal gland. It will change things but we are grateful to have him. I'll be relieved when I know the results of the other tests and can stop worrying about other things that could be wrong. I hate the idea of him taking medicine everyday. I hate that I can't fix it.
It has been a crazy week! Luckily Titus is still full of sunshine. He says "I've been on lots of dates with you Mom." He let everyone try to find the spot on his arm where he had blood taken and he told everyone he got three stickers.
Wednesday, July 1, 2015
He has a big heart. This kid is always thinking of others. If he makes something at school I think his little heart just must immediately ask "Who would love this?"
He loves tomatoes. Hates whipped cream and jello.
He is a voracious reader and a good one. He has finished the Book of Mormon but he has also read hundreds of other books.
He really likes art. He draws and whittles and creates things from garbage (he doesn't think anything should ever be thrown away- he sees what it could be).
He has gotten a lot braver about trying new things recently.
He used to hate wrestling but now I catch him instigating the rough house with Garret.
He loves science and learning things. He spent his money on a solar system book at the book fair. He likes digging for fossils or learning about rocks.
He collects things. Post cards, rocks and coins.
His permanent extra tooth is growing in. He likes that it makes him unique.
He has a cute giggle and its worth tickling him just to hear it.
He loves Narnia and National Treasure. He says he likes books better than movies. After reading a book he analyzes the differences between the book and the movie (got that from me).
Sunday, June 28, 2015
This week was our first full week of summer. I had grand plans of beach days and popsicles, sprinklers and water balloons. Nothing, seriously NOTHING went like I planned it. Instead it went something like this (I say something because there is NO way to capture the week in words or pictures)-
Adele started the week out throwing up and Gideon had Diarrhea (bad diarrhea). I felt like I was up a lot in the night with those two. But a couple days into the week I thought we were turning a corner. Then Wednesday morning about 3 am Titus started puking. It was starting to wear on me. Taking care of kids all night and chasing kids all day. But I figured I could put a couple more days in and then hopefully we would all be better.
Titus puked all Wednesday. This part is graphic but worth remembering. Wednesday evening he threw up all over me. Before I could clean up he said he had to go to the bathroom. I carried him in and before we made it he pooped all over me, himself and the floor. I'm telling you this bug was a nasty one. That day he also had a few spikes of fever that were pretty high. We made it to the night time and Tyler and I took turns sleeping near him because he needed something pretty regularly through the night.
Adele threw up again that night. But our guess is she just overdid it on her still recovering tummy because it only happened once after she drank a ton. We survived the night- barely. In the morning his temperature was lower but he was still tired. He slept hard all day. I would prop him up and make him drink as often as I could. He still thew up a bit more but I was hopefully we were on the downhill side.
In the early afternoon I propped him up and his eyes rolled back in his head and he went limp. I got him to respond to me and let him sleep some more. He started acting really weird then. When I woke him he couldn't focus on me, his eyes got a big scared look and darted around the room. Then his muscles started acting weird. He would be awake and suddenly start grinding his teeth together really hard. Then his head started jerking to the side and staying like that. His arms and legs started getting tight in weird positions.
Tyler was suppose to be home soon so I got Titus already to take in. He was unresponsive at this point. I had him in my lap and he just peed all over me. I changed him and myself again and he peed again. Then started violently throwing up on me. I quickly put dry clothes on my smelly body and prayed Tyler got home quick.
He did. He gave him a blessing and I left. On the way to the hospital he laid on the backseat and was all distorted looking. He had an arm tucked up in an unnatural position and his leg was too. His head was to the side and drool just ran out. I am not a panicer by nature but that was the closest I came. I was yelling for him to wake up, singing to him, telling him it was ok, praying, yelling at other drivers (don't tell Tyler I always give him a hard time for this). It was the longest drive into town I've had.
We got to the ER and rang the bell. No one answered. I rang again. A lady looked at me through the window and held up a finger to wait. So I rang it again (I know, rude right?). She opened it and as soon as I had him inside the doctors skipped triage and put him in a room.
The doctors started ordering all kinds of tests and people were buzzing all around. One of the first test they did was a blood sugar test. His blood sugar was at 20 which is really, really low. Some people go into comas at that level. They put an IV in him and he didn't even acknowledge they had done it. They shot some sugar into it and about three minutes later he looked at me and I knew he saw me. I hope I always remember the feeling I had when he looked at me and I knew he knew me. He wasn't completely better but he didn't look like death- his muscles relaxed, he responded when we talked to him. Poor guy had bit the inside of his mouth up really bad while he was having the muscle stuff. One doctor called it a seizure another called it something else. Either way it had been seizure like behavior but not violent like you picture a seizure.
I overheard the doctor talking to the specialist and he said "this kid had us all scared". He looked like something neurological had been severally wrong with him. I must ad the doctor also said that the Mom was really rational and handling it well. I took that as a compliment because the situation had been so intense.
After that they still ran lots of tests and ultimately decided that since it is not normal for a four year old to be severely hypoglycemic after just two days of being sick that we should be transferred to Seattle to Children's hospital.
Titus and I got to ride in an ambulance to Seattle. We almost missed the ferry so we even got to ride fast with the lights on. Poor Titus doesn't even remember the ride. Had it been different circumstances he would have loved it. I did not love it. Between worry for my child and being pregnant sitting sideways going fast with nothing in my stomach- it was a long ride. And here is a sad confession- the ambulance stunk and it was me. I still smelled like throw up from Titus and I had put on my stinky shoes that were by the door when I hurried to the hospital. The result was one smelly ambulance ride. The paramedics said if I had called 911 and they had showed up and found him the way he was they would have life flighted.
At children's Titus had more tests run and was eventually admitted- at four in the morning. Pretty much I was running on a week of not enough sleep. But we got through it. The doctors there were so nice and good with kids. Titus never once panicked when blood was drawn and he had a lot of blood drawn and lots of finger pricks.
Friday it was more tests and lots of watching his blood sugar levels. It took him a long time to stabilize. He bounced around in the sixties for most of Friday but by Friday night he was eating a little and drinking so they started improving.
Test results started coming back and most everything was negative. By Saturday when we were discharged the consensus was that it was a result of the GI bug burning through his reserve sugars. It's not normal and there is a chance his body doesn't store up as well as it should. It could be a fluke reaction to this one illness or it could be something else. For now we have a glucose meter to test him if he ever shows signs of low blood sugar again. If he does we know what to do and if it becomes frequent there are other more invasive tests they can do. Hearing blood sugar over and over I thought diabetes but every doctor confirmed this was not a diabetes issues. Now that I have been educated on blood sugar I get that. I am grateful for patient doctors that helped to explain things to us.
Everyone at the hospital and our friends and family were so great. We really felt everyone's love and concern. Our kids were especially happy to have Titus back. They had all witnessed his condition before he was taken in and were worried about him. Garret said to me tonight "it juts feels better when we are together." I agree, but I am grateful that Tyler and I are a team. We talked often and he trusted me at the hospital and I trusted him and home and we managed to get through the rough days. That was one of the blessings of the experience. The joy of being together and feeling how much we all care for each other.
There were lots of other tender moments. The first time Titus was enough himself to smile at me I said "I love your smile I missed it." The rest of the time at the hospital anytime I made eye contact with him he smiled at me.
I felt a lot of motherly pride, so many people complimented him on what a nice kid he was. Then when all the kids were there and they weren't allowed in the room. They sat in the hall patiently. The doctors couldn't believe what great kids they were.
My choices were a fold out chair to sleep in or to snuggle with Titus. I chose Titus and just being near him I felt so much love for him.
Whenever anything was scary he wanted to hold my hand.
At one point I was cleaning up diarrhea at the hospital and he said "thank you" he wasn't doing great yet but he said it and I felt so much love for him. I was grateful I could serve him. I told the kids early in the week when we were cleaning up after the kids "This is love. If anyone ever asks. This is love." And it is. I felt it so strongly.
There were tender moments mixed in the whole ordeal. I don't ever want to relive the last few days but we got through it and we got through it well. What exactly is ahead, I have no idea. But for now I am grateful to have Titus home and sleeping peacefully. I'm grateful we are all together.
I didn't take any pictures during the scariest moments (for obvious reasons), you will have to trust me it was bad. But I snapped a few later.
Monday, June 22, 2015
Sunday, June 21, 2015
We celebrated today by attending church, eating ribs and playing with his new croquet set!
One morning was spent at the beach. We live right by it but my kids never get sick of it.
Friday, June 12, 2015
We had an end of the year pack meeting and swim lessons.
Every day has had multiple activities. All good things but I am excited for a day or two of nothing. They have a half day on Monday then we are free for the summer. I think I am as excited as my kids!