Here’s the record of what’s been going on. ER dismisses is because he was acting normal with his device when the resident came in to check on us. I’m Going to take him into his general pediatrician today. She’s been out of town for the week. Hopefully she’ll be able to figure something out because I’m going crazy with the situation.
4/9/18
6am- woke up seeming fine he asked for a muffin. We didn’t have one so I offered him puffins
6:55- 124, went from normal to moving over to the couch and spacing out. Altered state to picture. Out of it. Typing sick and sad. Forehead felt hot for a minute. Then went back to normal.
7:28- 100, still in altered state. Laying on couch and looking lethargic
When he first lays down during the transition, he gets really hot and then back to normal quickly after.
8:07- 90, just before he ate a bite of waffle (all he ate), still in an altered state but at least watching tv
8:34am- Typed head feels sad and sick
8:38am- sitting up and in better state
8:43am- 93, def more himself. Sitting up on the couch.
8:47am - asked for water and took a few sips, def in a better mood
9:00 am laying down again but not horrible
4/8/18 ————-
Didn’t keep good notes today. Basically he woke up around 9. Didn’t want to eat anything. Was out of it but able to slowly walk. We went out to get an enima, also went to Jamba Juice to see if I could get something in him. He said he’d drink banana juice. Got him a strawberry banana and kale smoothie. He drank about 3/4 of it. He also asked for a carrot there. And ate almost all of it.
We came home and I used the enema on him. A couple of formed pieces at the beginning just popped out. And then some more squishy stuff. A lot came out but not as much as should have being it He was able to push. He did understand what to do and clearly it made him feel a bit better.
He watched TV more. Kept acting on and off. Mostly off.
Later in the day he asked to go poop and pee. He couldn’t. I asked him if he wanted mommy to help and he said yes. He laid down again and we got more out. This time none was really formed.
Later in the day he laid down on the towel and asked mommy help. Got more out, again none formed. And not much
I fed him a yogurt with Mirlax mid afternoon and he at the whole thing.
Evening he ate a few small bites of chicken. Kept asking for grapes. So ate red and green grapes. And had some water throughout the day as I gave it to him. Not as much as usual but some.
4/7/18 ————-
4am- Woke asking to pee and poop in the toilet. Tried and he didn’t go. Had a very wet pad so I changed it. I wanted to test his sugar but couldn’t find the machine.
10am- woke up out of it. Tried to pee but couldn’t. Had very wet pad and plenty of Pee in diaper. I asked him what he wanted to eat and originally he said yes to an egg sandwich. I made him one and he said no and asked for grapes. I tried to get him to eat anything else protein and he would only eat grapes and drink water.
10:25am- 65, hadn’t eaten since I can’t remember :( but he ate grapes :)
11:15am- 133, seemed very lethargic but sugar ok. Asked for more grapes.
12:44pm- 134, had a point when he was perked up but then laid down again. Sweating but not hot or cold
1:53pm- 146, he asked for a carrot so I tested him just before he was eating it. Why did it go up?
Next reading he wanted More grapes
In the afternoon I took him to the ER at children’s hospital. When he when we were driving he was totally out of it. He fell asleep in the car. When we were walking in he was really lethargic walking very slowly.
In order to get his vitals I gave him a device. And he perked up. Then he was acting totally normal bouncing around listening to his music. So they must’ve thought I was crazy.
While we were there he went from that state and then he walked over to the bed at one point and just kind of fell into it. At that point he got hot and sweat on his forehead. Laid down on the bed looking really out of it.
Stayed that way for a while pushing the device away. Eventually took the device back and listen to music but still lay down.
We were there for a few hours Neuro surgery came by to talk to us about the possibility of shunt issues. Me and the neurosurgeon both agreed that it wasn’t probably the shunt. The resident came back and said that basically I should use MiraLAX so he can poop and we go home. I asked about the change in his state that she didn’t really seem to address it.
While we were walking out he was really out of it again.
4/6/18 ————
5AM- Woke asking to pee and poop in the toilet. Tried and he peed then went back to bed. I did fill his water. He asked for a snack
9:38am- 81, before, which is normal but pretty good considering he had been sleeping for a very long time and not eating even longer. He ate a banana with peanut butter, a lg strawberry and a few raspberries.
20 min after he ate, it dropped to 70 and an hour after he ate, by 10:40am, it was 67!
11:21am- 74.
11:57am- 82, before he ate. He ate half of a small egg white and cheese quesadilla and seemed ok after.
12:44pm- 88
1:20pm- I realized he hadn’t had his powder to help him have a BM so gave him that and a capsule of probiotic in a small banana yogurt. Didn’t take a read right before.
1:38pm- 71, laying on the couch again. Looked out of it so did a reading
2:30pm- 110, had been sleeping on couch for about 30 mins.
2:45pm- had him eat a hard boiled egg. He didn’t want to eat yolk. Had some water. Def perked up with a Thomas show.
3:17pm- 108, up and watching yet another show, seeming to be in a good physical state
4/5/18 ————-
Morning slept until 10. We made banana waffles with honey. He ate two. We then headed out to see Dr Marcus dropping Lila on the way. He seemed a bit out of it before the iPad but not as bad as other days.
asleep on my bed at 6:35
Woke up at 9:30had a huge BM, yay! Very loose but large. I filled his water
4/4/18 ———
asleep by 6:30
4/3/18 ———
similar mood to 4/2, we went to Underwood Farms. In a strange state on the way, kind of sleepy and irritated but once we arrived, had a good time exploring the Farm and checking out all of the animals. Had a hot dog and some pretzels and a box of apple juice and seemed fine after. On the way home, was a bit fussy but not as bad a earlier. When we returned home, he fell asleep on couch by 8:30pm
4/2/18 ——-
- in a very strange mood all day. Very fussy and sleepy, except when he was on the pink iPad which is his reward for going to the bathroom in the toilet. He peed many times during the day and seemed fine when he had the iPad. Since we are working on toileting I would take him every time he asked, which was quite often. We wanted to go somewhere special during the day with Lina but ended up just going to Pinkberry because Ian was so fussy in the car. Looked very tired and super cranky. Tilted to the left @ 45 degrees in his seat.
When we finally got to Pinkberry, since he hadn’t eaten all day I wanted him to eat something so got him a cone which he nibbled on. I also gave him a couple small bites of frozen yogurt hoping at least it would help his stomach.
We walked a bit and he seemed a bit better after that. But in the car on the way home, same strange behavior. Sleepy and fussy.
Had homemade pizza that night but he didn’t eat any. I can’t remember if he ate anything else that day. He fell asleep early but can’t remember exactly when.
4/1/18 ——-
Easter and he had about 6 BMs early on in the day. I assumed it was the eating from the day before. By the end of the day he seemed a bit off. He was laying on his bed by an early dinner time and Mike had to coax him out to eat. Not even sure what he ate.
3/31/18 ———
at an Easter party and prob ate more cookies and pastries than he’s ever eaten at one time. I was dressed as the Easter Bunny and wasn’t keeping good track of him.
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