Thursday, April 25, 2013

So far so good

It was 4 am. There were sheets of warm droplets coating the homestead. The man of the house prepared for a major check ride at work and I laid there quietly praying these drops would be a good omen for the day. Rain means traffic. Traffic means delay. Delay means stress. But it also means rainbows.

In a wicked turn of events- I called the afternoon before to confirm Lily's Tuesday scans. I didn't sleep the night before- scans do that to me- and they aren't even mine. I knew the next week was going to be long, the scanxiety bad. The nurse in the sedation center asks if we could come in that afternoon for a physical- then they could squeeze us in Wednesday. My gut reaction screams- do it. Well- I tell him- I already scheduled the physical at our clinic this afternoon. Great! He says- then we can do the scan on Wednesday! Well, um- my son has an appointment- there's no way my husband can get off work to help transport the cretins- I just didn't know if I could make it happen- was there a rush? Well no, he says- but Wednesday is wide open- she'd be the only kid up there. Ahh. That's not a bad turn of events- flexibility. I made some calls. My neighbor agrees to take the kids to school( Lily would have to be there by 7am) and pick up Phillip and bring him to Tripler for his 1pm appointment. I call endocrinology- because I am thinking half sedated- starving Lily at a 2.5 hour appointment - probably not a good idea. I ask- knowing there's no chance- if there are any openings before noon- say somewhere in the 9-11 window(precisely when Lily's in her scan).  I explain the reasoning- she checks and says they will make it work. SO that's when the waterworks start. I hate asking for help and when people are so accomodating- it really gets me. I don't know what that says about the system(that everything is difficult) or me(I've learned that everything about the system is difficult) but I seriously am grateful when everything doesn't have to be SOOO painful for everyone. SO I call my neighbor back to let her know- she is off the hook for Phillip's transportation- I will just take him with me. He will miss the whole day of school- but this will save us like 3 hours travel time and parking nightmares in the long run. 

We get to the hospital and go to admissions. We are nearly late due to the rain phenomenon and traffic. Admissions- after long chats and much searching- finally realizes that the policy changed(this is the 3rd time- so roughly ever other year they change this) and that Peds Sedation does their own checking in again. Great.  We get her checked in and nuclear medicine is running behind. Meaning- they got stuck in traffic too. I keep Lily entertained- One of our favorite child life specialists stops by with 2 new Disney Barbie friends- Genie and Ursula- both huge hits with Lily monkey. I try to reach endocrinology- because I am going to get put on a list I really don't want to be on if I don't show up to this appointment. I leave messages. Ugh. I give the teenager money to run and get food- he actually brings said food back up to the sedation center- you seriously can't be eating that in front of your sister- she's NPO. Oh- sorry. Go to the family waiting room. Ok. The nurse offers to show him- Phillip says he knows where it is- the nurse shows him anyways. The kid just managed to go from floor 1 oceanside to floor 6 mountainside on his own- he may be dense but I think he can go out the hall and to the left and find a seat in the waiting room. 

It's finally time to sedate Lily. I remind them that she's a tough stick- they know the game plan is to dart her first. Phillip peers into the treatment room as she gets wonky she looks right through him- calling his name. He laughs. She finally dozes off- she looks dead-he says. No that's not what dead looks like- I tell him- that's what passed out looks like. They wheel her out and she desats a few times- it's gonna be one of those days- they might have to put a tube in- oh well- better than the alternative. We head down to endocrinology armed with more apologies. It all worked out. I have Phillip present his findings after he studied his 14 pages of blood glucose and insulin values and the doc is impressed. Mind you, the appointment isn't any quicker- they are just long, thorough, tedious appointments- but it is fairly painless. By the time we get back upstairs- lily is awake and her head is bobbing around like a buoy.  She begins her- I want to go home- I want to go home- chant. I'll take it over the I want to go home screaming.  She starts to perk up- she keeps saying she doesn't want to drink. Phillip buys her a bottle of water. I have a huge headache- I take a giant gulp and encourage her to take a sip. She takes a sip. The anesthesiologist checks on her and asks if she's peed and is drinking. The tech- who saw Lily drink but not me nods. They examine the water bottle- Phillip looks at me with that smirk- he knows better- he knows what needs to be done to get us out of here and fortunately , Lily is still out of it so she doesn't say anything. Lily- who when asked when she had her last clears that morning says- 6:07. and I say 6. The tech laughed and says 6 it is. No, it was 6:07 says Lily. Oh well, no matter when the procedure was delayed an hour, so all was well.

We manage to squeak out of there- beat traffic and get back to school in time to pick up Kiera from Cheerleading.  The phone starts ringing- the eerie sci-fi ringtone- it's the hospital. I can't bring myself to pick it up. The rain passed- it's beautiful and sunny- but no rainbow. The phone chimes- there is a voicemail. I take a deep breath- here goes nothing- it's her oncologist- everything looks fine- nothing of concern- so now we watch her hormone levels- she'll talk with her endocrinologist and we'll go from there. Now droplets are falling again- but it's ok - it's sunny out and I got my rainbow. 

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)