Day 2, Stick Me Baby One More Time

It's so hard to understand right now, but believe it or not the nurses have been "sticking" Chelsea from the time the sun came up until just over an hour ago. The last nurse finally left us alone at midnight. I know it's not their fault and they do the best they can, but I'm so frustrated right now that Chelsea is battling all of this and she doesn't even appear to be sick!

The morning started with a chest x-ray which was clear, then we got an iv started in her right hand...whew! I'll admit I was with her, but it's getting harder and harder to do. We experienced our first rounds... they finally told us, "we'll come back and talk to you." I guess they were on a time limit and normally parents don't come at them like we do! But they came back and explained in detail the procedure for today. Here's what we heard (please know it may not be what they said, it's just what we HEARD):

From the initial blood work, there were signs which indicated AML (will define later, but can't spell it out right now), The ALL is a kind of leukemia that is more common and has a higher cure rate, but that's for children with 46 chromosomes. We're learning that her 47th chromosome will likely work in her favor throughout this battle.

Our doctor will be Dr. Ga...(hmmm, I already forgot, but his name isn't important). What's important is he is the leading doctor in the world in the area of AML and Ds!!! So if she truly does have AML, we're in the best hands in the country/world!!! They said he's still fantastic even if it's ALL. The problem is this superman is out of town until next week. I'm eager to meet him though.

They also explained the bone marrow biopsy which they completed after lunch. During the procedure, I sat in the room w/ Chelsea and Ryan, but I knew it would seem (as the doctor put it) barbaric, so I left just before they began the procedure. They extract bone marrow and a small piece of bone from her hip (actually her butt). When they explained that it could flow very easily, or in some cases it takes a while to draw the marrow out, I knew instantly in our case it would be the latter, and sure enough, it took much longer than they anticipated. Just as I was beginning to freak out while waiting outside the door, they came and told me she was fine. They had given her two drugs, versed and fentenol. The fentenol wasn't strong enough, so they had to give her more and more and more until she was actually laying down and in a very drowsy/half sleeping state. I think I heard Ryan mention just a while ago that they had to give her more during the procedure b/c she was in pain. I'm really glad I wasn't in there to see that!

Here's the frustrating part of today. They were hoping to give us initial results and a game plan today, but after viewing the marrow on slides, the diagnosis still isn't definitive! There will be more testing done on it in the morning and then they calcify the bone they extracted and will melt it down and test it as well. They are hoping to have more answers after rounds tomorrow. They did go ahead and put our name on the list for surgery tomorrow. If this is what they suspect, AML, they will need to put a line in her chest which will be used for IV fluids, chemo, and anything else given intravenously. They would also do a spinal tap while sedated tomorrow. The spinal tap will let us know how far the cancer has gone and if it's in her spinal fluid, ...well, I don't really know, but I know they don't want any there!

Do you want more frustrating??? After taking Chelsea on a rendezvous in the wagon tonight, I brought her back to the floor to have her iv checked b/c it was beeping. One nurse spent 30 minutes re-taping and adjusting her iv so she wouldn't keep bothering it. Then Chelsea and I were walking around the halls, and playing around the room for a while (Chelsea loves hiding in the cabinets under the sink and playing peek a boo!) The nurse's assistant told us she needed a UA, so they took off her diaper, applied sticky glue and attached a sterile bag to catch the UA! It was a strange contraption, but they put the diaper right on top and it worked. You can imagine how peeved Chelsea was though as she is SICK AND TIRED of these people holding her down and messing with her. Thank God she's such a doll though and as soon as they're done, she just smiles and waves!

So we think we're about ready for bed right? NO. Our nurse came in to help us put on jammies (did you ever know ho hard that is to do w/ an iv in your arm?) She noticed at this time (9:00pm) that her iv had moved, clotted, whatever, and wasn't working, she wasn't getting any fluids!!! So you guessed it, another IV! They called someone from the picu first and she had already heard of us b/c she knew baby Gabi! She told us from the get go if she couldn't get her in one stick she wouldn't try again. Well, you guessed it, no luck. After some begging from me the nurse finally got the Dr. to agree to let her go IV free over night and try again in the morning, possibly in the foot. This is really our last resort b/c she can't walk if it's in the foot, and for those of you that know Chelsea, there's no keeping her from walking! I was so happy we'd get another night iv free when another lady walks in the door from the PICU, gosh darnit!!! They took Chels to the procedure room this time and I opted out. I just didn't think I could watch it yet again. Well, maybe I should have gone, b/c guess what Chelsea returned to the room with? An IV in her right foot! This means, no walking, or standing or anything on her foot! She has to be held in our arms or sleeping, b/c as soon as she wakes up, she stands up in the crib. I don't think anyone was thinking about that when they put it in. They finally had her all fixed up and let me put her to bed at exactly midnight. I'm also very frustrated b/c the doctors today said worst case scenario we'll have to wait the weekend out to get final results on Monday. If this is the case, then we've got a toddler we'll have to contain for three days!!! I don't even think that would be possible.

So my prayers for tonight are...she can keep this IV in her foot and will not have to be poked anymore, we get a diagnosis tomorrow (morning) and are able to get some answers finally and start creating a plan of treatment, and finally that we all get some much needed sleep and they leave us alone for the rest of the night!