From the ICU to the dungeon…

Because Tiara is improving so much the doctors wanted to move her out of the ICU and put her on the “floor” today. For those of you who aren’t frequent fliers of the hospitals, yes that is what the nurses actually call kids like TT, “the floor” doesn’t mean literally on the germ ridden ground but the next level beneath ICU. If you aren’t in the ICU that means you aren’t that sick in the medical world. You may feel and look like crap but people aren’t worried you are going to die during their shift.

Unfortunately because the floor is full, TT got moved to an in between spot, “the dungeon” as the nurses call it. You can’t really tell from the pic but this place feels like a cave. We got transferred from a big beautiful room with a view of the new outdoor park with a big pull out bed for me to a small dark space that has yet to even have a pull out chair installed for my bedtime.

The weird thing about this process is it always feel the same. You get to the ICU and your child has constant amazing care in a beautiful setting but you are plagued with worry because there is a possibility they may not get better. Once you move out of the ICU you are so grateful you kid is getting better but then you are moved to a small,dark depressing room to finish out their recovery. I think they do this so you are super motivated to get the hell out. The moment we got transferred to the new room, my wheels started spinning a plan.

 

If I can get her off the oxygen by Thursday afternoon, they may let us go home by Friday. Friday, Friday, Friday,that is our goal. Saturday is Tabitha’s birthday so we need to be home by then for sure.

So all day I have been doing trial runs of taking off her oxygen mask and seeing how long she can last. Looks like we are only at the 3 minute mark but there is still hope. TT tends to get better as quick as she gets sick.

Scary enough last night while I was sleeping she tore off the pulse ox monitor and took off her oxygen mask. For some reason the machine didn’t alarm, or neither the nurse or I heard it right away. Either way I always wake up when I hear the alarm and check the numbers. Last night I jumped up when I heard it and her number was 85. The nurse was standing over her watching her and I asked her “is that a real number? She hasn’t been that low all day.”

Nurse: “well I found her without any oxygen on and she is just filling her lungs back up. I have no idea how long she was like that.”

What the hell, seriously Tiara! I mean that kid really knows how to screw with my nerves and the nerves of everyone taking care of her. But once she smiles and does a dance move we always forget what a defiant patient she is and how she finds pleasure in scaring the heck out of me.

The good news is that Lou managed to find a way to work absolutely everyday since we have been here since he had a goal he was working towards for the end of the year and he made it. He also managed to bring me a Starbucks coffee every morning by 6am along with my favorite spinach feta wrap and take care of Trinity and Tabitha. Well, actually Tabitha took care of Trinity while she was sick, so it has been a whole family affair.

xoxo tiffani