July 2-3, 2015 "Days 8-9"

Thursday- Rayden slept pretty good last night as well. He only woke up at 2am to have a bottle.  If they wouldn't come in here every hour and check his EVD I wouldn't have to keep giving him his froggie over and over. But he goes right back to sleep so I suppose I shouldn't complain.

We have been able to Facetime with Daddy every morning and afternoon. I wish I could video how cute Rayden is. He tries to touch the phone and laughs at his Daddy's face. ADORABLE!!

Rayden sucks on his hands/fingers so much that we are so afraid he will mess up the third IV. His nurse found a restraint strap to wrap around his hand. It's been working wonderfully. He can't get to his IV and he also has something to suck on. The only problem is the buckle on the side. After he scratched the blood out of his nose I cut the buckle off. Now it's perfect.

They took another CSF culture today. This will be the third one after the original tap in the ER. So far all cultures have been clean after the removal of the shunt. Although Infectious Disease says Rayden could come off the antibiotics, Dr. Elton says he will stay on them until he goes back into surgery. So they will continue checking his blood every day! But it's not as bad now that they get it out of his foot.

The PICU nurses say Rayden could go to the floor because he's not that 'critical' but Dr. Elton wants them to monitor his CSF levels every hour. This is too difficult for floor nurses with their patient load. (The PICU nurses only have two patients.) A tube in the center of your brain hanging out sure seems critical to me...

I wish we could go to the floor though. Sleeping in a recliner in a room full of lights is certainly not comfortable. Not even to mention that the air conditioner runs 5 minutes followed by the heat 5 min. It's driving me crazy! Rayden's pod is directly in front of the nurses station so there is always a lot of noise that startles him and just keeps me awake all night. I have to leave the unit just to go to the bathroom, get water, or eat. One of the nurses actually told me they make it like this because they really DON'T want parents to stay in here. Also, it's suppose to be a short-term place, although we will be here for 14 days at least. Don't get me wrong, the nurses are really nice and very sweet to Rayden. They're just not mommy and daddy....

Friday-This is pretty much a waiting game. Rayden's body needs time to accept the antibiotics and fight off the infection before they will re-internalize the shunt. Since things have been stable, Michael has been able to work all week. He arrived this morning to spend the weekend with us. Rayden was so excited to see his Daddy. The way they look at each other is just priceless.

The only real concern today is that Rayden lost weight. When he arrived last week he weighed 16.1 lbs. Now he only weighs 15.8 lbs. I know that's not a lot of weight loss but they want to keep an eye on it.

Lisa and her collegue are experimenting with some ideas that would benefit children like Rayden. So while he is in the hospital it is a good time for them to try new things. Rayden needs the strength of the cast but the flexibility to remove it like the braces. They are trying to create a little cast that can be removed.

Rayden has been getting so irritable being in this room and staying on his back in the crib. I can take him out and hold him now but it's not the same. We have to get the nurse in here to reposition the EVD every time. They taught me how to turn off his EVD while he's still in the bed so he can play. We allowed him to do some tummy time. He was super excited!!

Daddy spent the night with Rayden so I could go back to the RMH to sleep. I can't even describe the weight that lifted off my shoulders. To be able to lie down knowing that he is being cared for and not laying there screaming allowed me to rest soundly.