Made of Gray

Day 6 - Caleigh's Half Birthday

Holly D Gray13 Comments
Caleigh and Eric had a fairly ok night of sleep. She had another fever around 10pm so they gave more Tylenol. She slept pretty good until they came in at 4 to get labs. Since Caleigh's central line is gone labs have to be drawn wherever they can find a good vein. This is an issue. After 3 sticks and Eric catching them using chlorahexidine, which Caleigh is allergic too, they finally got the blood they needed. After that she slept until about 8ish this morning.

We are on the same floor we were on after Caleigh got out of the PICU following her STEP procedure in June of '08. A lot of the nurses remember us. Mostly Eric and his attitude! They can't believe how big Caleigh has gotten and just how long it's been. We had a lot of problems with cleanliness back in '08 and guess what? Yep, we do now too. I'm going to try to get Caleigh transferred to the oncology floor where they know their line care and infection precautions. We'll see how that goes. The hospital is very full and we should feel lucky that we got a room at this point. If we don't get moved then there will need to be a quick meeting of the minds before we continue on here. Our nurse today usually works as a nurse manager in an office. Not saying office nurse managers don't know their stuff, but this one was a mess. Caleigh doesn't even have a central line right now and we're catching mistakes. It's stupid for us to have to correct every little thing. It's exhausting.

Caleigh's white count stayed about the same today at 4.9. Which means we continue to stay locked in our room missing out on all the fun child life activities. I'm not sure we would take her to those activities, but a nice walk outside or up and down the elevator would be nice. Hopefully tomorrow it will make a bigger jump.

By the time I made it to the hospital at 9 this morning, Caleigh's IV that the anesthesiologist placed yesterday was already showing signs that it wasn't going to make it the rest of the day. When our GI came by he went ahead and wrote the orders to stop the TPN and remove the IV. He called anesthesia and off we went again to get another IV. They only allow one parent to go back so Eric got the first one and I went today. They almost didn't let me go, but I insisted considering all her allergies to adhesives and uh, Caleigh's history of IV's is locked away in my brain. No nurse would have that.

When we got down there one anesthesiologist after another came through the doors to take a look at Caleigh's veins. After 3 of them tried and missed they were starting to talk about putting her under to try to get one. One last anesthesiologist came in and decided to look at Caleigh's veins with a sono site, which is basically an ultrasound machine for veins. He looked, he found and he got it in, but he made no guarantees about how long it will last. We need another 3-4 days best case scenario. We are praying Caleigh doesn't have to go through this everyday until then. It was an exhausting hour and poor Caleigh had screamed and fought the entire time. If this IV goes tomorrow, I'll be asking for sedation meds before we try again. I pray it stays.

The whole thing sucked. It's just unfair. The rest of the day she has been clinging on to me and softly whining. The whimper turns into a scream the minute she hears a strangers voice. With Caleigh getting older and knowing exactly what is going to happen to her, it makes it very very hard for Eric and I. I've gotten a quick reminder this past week as to why Caleigh isn't a social butterfly. Strangers hurt.

It was different when she was a baby. It was somehow a tiny bit easier knowing she wouldn't remember those moments. Those days are gone. She knows and she remembers. And yes a two year old can hold a grudge.

For me on the other hand, I've become wrongly hardened to the process. Things that used to make me nauseous or upset don't anymore. I get in there and do what I have to do to help get Caleigh the best care possible. Today she screamed for an hour while they held her down trying to get that IV. I didn't even shed a tear. I didn't get sick to my stomach. I didn't yell and scream at the people that missed. My daughter's blood was all over the floor, bed and the hands of those trying to help and I didn't even break down. I comforted Caleigh with my words and hands. Became weirdly interested in the sono site. Told each person that tried to get the IV and missed "thank you" before they left the room. I can understand where they are coming from. I'm interested in where they are coming from. Something is wrong with me. Seriously, who does that?

I don't always feel like Caleigh's mom anymore. I feel like her nurse, advocate or her doctor. Most of the time it's hard for me to transition back into mom and especially since the begining of the year. My emotions are all but gone. I'm tired of people telling me that I would be a great nurse. I am a nurse. The nurse to my daughter. I didn't want that job and I sure as heck didn't ask for it. Eric's the same way. He often takes on the role of firefighter and paramedic with Caleigh. I hate that for him. I know he just wants to be dad too. If we didn't take on these roles Caleigh wouldn't be with us today. I'm sure of it.

I'm tired of the "only special people get special children" I'm tired of the "God will only give you what you can handle" speech. I know people are just trying to help and it's hard to know what to say to someone in our situtation. I've been there. I know. In the world of special needs children or chronically ill children those quotes are standard. Just like the typical sayings after someone dies. You don't really know what to say so you go with one of the old goodies like "our condolences" "we are very sorry for your loss" kinda lines. After awhile people get on with their lives, the death isn't present anymore and people stop saying the same things to you over and over. I'm pretty sure I'm not asking for anything in particular here, but when you have the same conversation over and over with everyone you meet and they use the same line on you every time, it just gets old and it's not going away.

I'm going to jump off my soap box to try to get some sleep now. I pretty sure I just need some sleep. Going home would be nice too.
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