Friday, June 29, 2012

Day 91...but mostly a long-winded account of Day 90

Okay, so I was totally going to post yesterday since it was Day 90, but yesterday was a non-stop whirlwind, and by the time I got home, got the girl-child to bed and got a minute to myself, I was too exhausted to keep my eyes open, much less blog. You would probably be thankful I waited until today when I've had a whole five hours of sleep under my belt to blog if you had seen the garbled, non-sensical mess that was my brain last night. I could barely keep my eyes open talking to my grandmother about how the day went.

So, here goes, my slightly less addled account of Day 90!

Why are the numbers so important you ask, throng of new readers who were referred by a friend because my blog is so amazing? (Okay, I may still be a little tired) Transplant Day is Day 0. Every day after that counts upward towards Day 100, which, if we can make it that far without complications, will mean that the transplant was a success, and she will technically be out of the woods. That day for us is 9 days from now, on July 7. That is the day that she can have fast food again (although I will tell you why I am a bad mom in a second), when we can start venturing out into the world again (with caution, of course), and when we can breathe a little easier each day that she makes it past without something going wrong. So Day 100 is a pretty big day in BMT land, and we are fast approaching upon it.

Anywho, I haven't blogged much (or at all) since we've been  home because I have been extremely busy trying to settle Miss Boots back into a routine and to settle her back into civilization, since her behavior indicates that she has lost her freaking mind sometimes. Tantrums times ten, hitting, biting, sleep issues, potty training (which we finally have under control, thank GOD!!!) plus trying to keep up on all of the cleaning, dusting and laundry that needs to be done, I am working the equivalent of two full time jobs, at least. And it feels like four. For all those who think I sit around and eat bon bons and watch Dr. Phil all day, or that I should be doing something more to contribute financially, well, I'm trying to find a polite yet effective way to convey the general idea of "kiss my ass", but I guess there isn't one...

Yesterday was just such a day where I think I definitely earned my keep. Day before yesterday,  on Day 89, Sarah had a BMT clinic appointment, nothing unusual, standard routine. The night before that, I was flushing her lines and I noticed some small pinholes in the bottom of her red lumen. I went ahead and flushed it anyway to see if it was leaking, and it wasn't. But just to be sure, I called the exchange anyway, and within minutes, the on-call oncologist called me back. I explained the situation, and she told me that it could probably wait until clinic the next day, so we kept our usual appointment. I promptly explained to the nurse, nurse practitioner and the doctor that her red lumen was damaged, and they decided that while there is still necessity for a central line, Sarah is in the unique position of having two lines, which she no longer needs since she is getting better. So, as the broviac was going to come out soon anyway, and they can get what they need from her port-a-cath, it didn't make sense to repair the broviac when it would just be coming out within a month or so. So they decided to take it out right away. The doctor gave me a choice to take it out then and there, or to wait until the following day (yesterday), because we would have to be admitted since it would be a surgical procedure and it might take a couple of days to squeeze us onto the surgery board since it was non-emergent. So, I opted to go home so that I could pack our things.

"Packing light" for "just a few days" for Miss Boots and I consisted of: A small, fifteen inch duffle bag with clothes for her and I; a small, twelve inch toiletry bag with necessities for her and I; Her large, fifteen inch diaper bag, with necessities for her; a small, ten inch case containing her portable DVD player, DVD's and connection cables; Small, twelve inch Disney Princess duffle bag containing Sarah's toys (about three Lalaloopsies, Castles the Unicorn, who has been present at every single procedure and hospital stay and was not about to be left out now, and her Lalaloopsy magnetic paper dolls, Nintendo DS, crayon roll, etc.); and my purse. Thank God for Graco strollers, which can withstand four years of abuse, being laden like a pack mule with tons of "necessary" crap and still being sturdy enough that we have no need of a new one!

I get a confirmation call from the hospital telling me to be there at 10 am, and alerting me to the fact that they offer free valet parking for the parents (three years later when I have been hauling all of Sarah's stuff in the Graco all the way around the block from the parking structure to the front of the hospital), and I am ready.

Sarah manages to get to bed on time, but stays up for another hour because she is scared, and wants to know step by step what is going to happen to her. So I give her the play-by-play, assure her that she is perfectly safe and that tomorrow is a happy day, because soon she will be able to take a real bath with no Press-n-Seal and swim and there will be no more line flushing, no more home dressing changes, which means less for me to keep up with and less stress for me, because Sarah howls all of the way through a dressing change, which is very distracting! I finally get her to sleep, finish up the packing, and by the time I have a minute to breathe, now I can't sleep because she has me worrying. What if she's nervous for a reason, my happy-go-lucky little girl who worries about nothing? Sarah is fearless. She's been watching Coraline since she was two. She has been fighting cancer since before she was two. She looks me straight in the eye and deliberately defies me on a daily basis. This child fears nothing but the dark and the vaccuum cleaner (Yeah, I can't figure it out, either...), so what if there is something to be worried about? What if she knows something that I don't?

I know the procedure is routine and simple, even more so because the broviac is still new, having just been placed in December, and she still had a stitch in it from when they put it in, so it was a simple matter to just reopen the stitch and pull the line right out. I know that the surgeons are world-class, and that they do this every day. I know she could not be in better hands. I know that this is a good thing, because it is one step closer to normalcy, to a better life for my daughter and myself, but still I manage to worry myself halfway through the night until the wee hours of the morning. I manage to haul myself out of bed at 7:30, when I didn't go to sleep until nearly 3, shower, dress, (changed my outfit three times, then went back to the first one I put on, jeans, cons and my lucky Tori Amos t-shirt that I have worn to every procedure Sarah has ever had) get Sarah up, dressed and the car loaded. By 9:15 we were on our way. Cutting it a little close, but registration is never on time at the hospital, anyway.

Sarah was NPO, which is an acronym for some latin phrase meaning "Don't feed this kid because we're going to drug her and we don't want food getting in the way". So I didn't feed her breakfast, and I didn't eat myself, because as a mother, I just can't. Even when food is available and allowed, I feed my daughter first. I serve her plate, then I serve myself. I don't eat unless and until she does, which means that on procedure days when she is NPO, I don't eat until after procedure because she can't eat until then. Save that little nugget of wisdom for later.

We get to the hospital in record time, because there's no traffic! Yes! Getting off to an auspicious start! I'm feeling better about this. Sarah seems to be in good spirits, which I have managed to get her into while I am driving, despite a minor setback with her complete emotional breakdown because Daddy couldn't get the day off to come with. That man works way too hard and doesn't get paid enough. So, I manage to work my way past the "pissed off" because I do not need her in this frame of mind when she is about to go in for surgery, and manage to console my daughter with soothing words, and distractions, and  promises of all that is to come (Disneyland with no broviac! Real baths where she'll get to play until her fingers prune because I won't have to worry about her Press-n-Seal coming off and getting her dressing wet! A surprise waiting for her when she comes out of surgery, because I always go to the gift shop and buy her a new friend whenever she goes in for a procedure!). This gets her smiling, and just for good measure, I throw on her Rapunzel CD, because while my iPod keeps me awake and helps to get my head in the game, I think she needs her music more than I do at this point. Works like a charm, especially when I sing along. She is distracted and happy, talking and laughing, and even declares that it is time to make chicken noises when I hit the apex of the turn on the freeway off ramp. This is always the designated spot to make chicken noises, I am not exactly certain as to why, but who am I to argue with a toddler's logic? If Miss Bossy Boots declares that it's time to make chicken noises, then it just is. 

I drive around to the front of the hospital, the promise of convenient free valet parking dangling before me. I think I literally heard a record screech to a halt in my head when I see the front driveway full of cars, and the valets standing around talking. I wait, figuring maybe one or more of them will make a move soon to get these cars to the parking structure, but no, they continue on with their conversation and I am now blocking traffic with 10:00 breathing down my neck, so with a mental curse, I drive around the block to the parking structure and park the damn car myself,. I sit Sarah in her stroller, torture the Graco further by weighing it down with way too much crap, and walk the block and half around the building to the front of the hospital, where the driveway is still full of cars and the valets are still chatting amiably. Whatever, I've done it a million other times, what's one more?

 I get into the lobby and there is only one person ahead of me. Okay, good. we're only slightly tardy thanks to the chatty valets, and we can still get this done. I let them know we're here, they make me a pass, (because semi-permanent hospital passes are another new improvement the hospital has made three years too late) and ask me to wait. Sigh.

Luckily, I barely have time to log in to Facebook when our name is called. We register, which goes by quickly because the guy already knows us, so I get my own jovial chat while he clicks off the questions in the computer with record speed. We are walked up to our room, told immediately that we will be getting a roommate. Double sigh. Rarely do we get a roommate we actually like, and this room is the size of a shoebox for one patient, let alone two. The nurse is one we've had before, and she is extremely compassionate and just plain damn good at her job, so she informs me right away that she has no idea what time they are going to get her in, but she understands that she hasn't eaten so she will find out right away. I take her to the playroom while we're waiting to hear, where she meets a little friend, Gracianne. Gracianne does not have cancer, (sometimes they put patients with other blood disorders or autoimmune diseases on the cancer floor), so she has the most gorgeous blond curls you have ever seen in your life, and she gave Miss Boots a run for her money in the sass department. Needless to say, they were instant friends.
Bella (in back) and Gracianne. Aren't they the cutest?

We went back to the room when the playroom closed, and met our new roommate, Bella. Bella is 8, and her brother Liam is younger, although I'm not sure how old exactly. Sarah commandeered Liam into playing with her, which he happily did because he thought she was a boy. The Lalaloopsies didn't tip him off, apparently, but nor did they deter him when his mother informed him that she was, indeed, a girl. They played Candyland, then played "mailman" with the cards from Candyland when they got bored, which consisted of them "delivering" the cards back and forth, and then when they got bored with that, Bella and Sarah starting "delivering" the "mail" on top of Liam's head, which he laughed off good-naturedly. More new friends!
Sarah "delivering" "mail" on Liam's head!

The nurse informs me that surgery can't take her in until five, and we are both starving, but she is so distracted with her new friends that she doesn't seem to notice or care that she hasn't eaten all day. Sarah looks sort of mournful when they bring in Bella's lunch, but I explain that we will eat as soon as she is out of procedure, and she doesn't complain. My poor baby should not be used to this, but she is. The nurse warns me that transport has a habit of arriving early, so I promise to have Sarah ready by four, costing her another visit to the playroom with Bella and Liam, but surprisingly, she doesn't throw a fit. I have her ready and in her hospital gown by 3:30, and damned if transport doesn't show up at 4:00 on the nose! We head down there, the nurse piles a ridiculous (but necessary) amount of blankets on top of both of us to combat the arctic temperature in the room, and we make light chit chat as we wait for the doctor to arrive. The anesthesiologist comes in, introduces himself, and with ninja-like precision, gives Sarah the Versed without either of us noticing. I realize in that moment that God has granted us a small miracle already. That is the first time ever, EVER! that Sarah was sedated and didn't scream her head off through the entire thing. She was alert and awake enough to tell me that they had already given her the medication, but I didn't believe her because she seemed relaxed, but not out of it. She was still herself, she was still my baby, there was still light in her eyes. That is the hardest part for me on procedure days, watching the light go out in her eyes.

She goes in by herself, no favorite nurse, no favorite child life specialist by her side, my brave girl, I kiss her goodbye, and she smiles at me. I settle into one of the sublimely comfortable purple leather recliners, prop my feet up on the ottoman, put on my iPod (I almost said Walkman, this is how tired I am! I think it's 1989!) with noise cancelling ear buds, and like it knows that I need this, the iPod pulls all of my favorites up on the random shuffle, everything I need to hear in that moment. I try to read on the Nook, but my brain is far too tired to concentrate, so I play Bejeweled 2 and try not to fall asleep in the ridiculously comfortable supple purple leather chair. Where do I get one of these, seriously? It must cost thousands, this chair, but I don't care, I so want one for my next birthday!

I am halfway between awake and asleep, losing at Bejeweled 2 because I am too exhausted to even match up three like stones correctly, apparently, and the surgeon comes back within ten minutes telling me the procedure is done, and it went beautifully. My phone is buzzing with text messages and email notifications, and I manage to answer one phone call from my husband before my phone dies on me. Thank God for my Nook and free hospital wi-fi, because I was able to update my facebook status to let everyone know so no one would worry. The doctor said they would come get me to go back to recovery within fifteen minutes. Fifteen minutes turn into thirty, and while I am immensely enjoying the comfort of this chair and my music and my e-reader, I start to worry that maybe I misunderstood, maybe I am so tired that I did not understand what the doctor said, maybe I was supposed to follow him out, and I didn't. What if they take her up to the room without me, and she's calling for me and I'm not there? What if they're looking for me, and I'm sitting in this chair and they can't get a hold of me because my cell phone is dead?

I am now sufficiently worried enough to reluctantly hoist my exhausted ass out of the wonderful purple chair and go inquire. The male nurse calls back to the recovery room for me, informs me that they have only just removed her breathing tube, and that he will walk me back there. In other words, I worried for nothing and I could have enjoyed another few moments of bliss in the purple chair. See what trouble my mind can cause?

They take me back, and she is still asleep. She sleeps for a good twenty minutes. She awakens, rubs her eyes, smiles at me like it's any other morning, then remembers where she is and peeks underneath her purple hospital gown to look for her broviac, which is no longer there. In it's place is a small square piece of Steri-strip, with a small amount of blood on it. She is free.

She gains her bearings a bit more, asks me if she can play a game on "Nookie" as she calls it, because everything has a name, and it usually has an "ie" at the end. My phone is Phonie, her dvd player is DVD Playerie, there is Stevie the TV, and Nookie. I hand it over, showing her a new free children's book I downloaded for her while I was basking in the purple chair. She was sufficiently entertained and happy. The nurse asked her directly if she had any "owies", which Sarah understands to be any pain, big or small, while the nurses mainly take it to mean big hurts. Sarah has been trained to give an honest yet respectful response when asked a direct question, so she told the nurse that yes, her chest hurt where they took the broviac out. She was not crying or screaming. She stated this matter-of-factly, then went back to playing with the Nook. The nurse gave her a shot of morphine. Sarah was more relaxed afterward, but continued to play a counting game on the Nook, and with precision was able to do it correctly.

We get back to the room, where we are given a warm welcome by our new friends, and informed by the nurse that there are no orders for when to send us home, and that there is now a hold-up because she felt enough pain to be given morphine. I explained to the nurse that I didn't think it was enough to keep us here, and she said that I should reiterate that to the night nurse because it was change of shift, and the nurse would take my word for it, being the parent. I agreed, and looked at the clock, fully intending to order Sarah some food, realizing that we had arrived ten minutes too late to order anything from downstairs,and my daughter had now gone a full 24 hours without eating or drinking anything. She starts to cry, my heart breaks. I try to console her, our new friends offer a variety of food, which she refuses. I manage to placate her with some fruit loops and chocolate milk from the kitchen, and within minutes she has wolfed it down (poor baby!) and is happily playing stuffed animals with Bella. Now, Bella is highly imaginative, witty, and HILARIOUS, not to mention that right around then she has a major case of the sillies, so the girls had a wonderful time playing, and I must say, it was just as enjoyable for us moms to watch. So much so, that even after we were discharged, Sarah wanted to stay and play!

Sarah managed to stop crying for a second and smile (sort of) for the camera! We love our new friend, Bella! :)

Okay, here comes the part where I'm a bad mom...before I get to the part where I'm an even worse mom...

We had both gone over 24 hours at this point without solid food or liquids. We were starving, literally. So, even though Sarah technically can't have fast food for another nine days, I broke down and we had Jack in the Box. Let me tell you, the look on Sarah's face was priceless, and I must say, I never thought that I would miss fast food as much as I did. Those were the best curly fries, everrrrrrr......Ten days too early, but maybe the fact that they were forbidden fries made them better, I don't know...

Okay, so I get home, fed, satiated, exhausted, but has been a long, but overall a good day. My body clock is still off, so even though I am running on fumes, I drift off somewhere around 2 into a dreamless slumber...I swear it felt like I had closed my eyes for mere seconds, before I hear a loud thud, and my baby screaming for me, but not in the spoiled brat way that she knows is annoying and therefore will get me to come in the room faster. This was for real, yo. She was seriously in pain. I get into the room, and she's lying flat on her belly, can't get up. I figure she's still half asleep, so I pick her up, check her over, she seems fine outwardly, and I am able to calm her down and soothe her back to sleep, so I think she's fine. Three hours later, when she wakes up (and I have been writing this blog for three hours), I go to lift her up and she howls in pain. Not good. She kicks up a fuss, cries inconsolably with my mom while I'm on the phone with the doctor because she doesn't want to go back to the hospital. I throw on clothes, shoes, put fresh pj's on Sarah, load the bags I haven't had a chance to unpack from last night, just in case we have to stay, and we are off. She is chatting jovially with me the whole way, I am a nervous wreck, trying not to cry and frighten her. Something is broken, I know it. I can feel it.

We get there, and they usher us in in record time, the ER is surprisingly empty. We see a doctor within an hour, get x-rayed within two hours, get results within another hour, discharged an hour after that.  She has a hairline fracture on her right collarbone, has to wear a sling for two to three weeks, or until the ortho consult tells us she can stop wearing it.
Sarah, looking none too happy with her new sling...

She doesn't really like it, and I had to pin it shut so she would keep her arm inside, so I am looking into ways to make this more palatable for her. I made a pink sling for her dollie, the one I made to look like a bald Lalaloopsy doll that she named Sarah and drags with her everywhere. I clipped one of her bows to her sling. I am trying to figure out ways to decorate this sling, maybe make her a prettier one if I can figure it out. She is already getting so self-conscious about everything she has to go through; at four and a half, her body image sucks, and she doesn't like herself. She actually told me this morning that she was sorry, that she "always does this", referring to the fact that she had a hairline fracture in her hip at 20 months, which was how we diagnosed her leukemia in the first place. She thinks this is her fault, and no matter how many times I tell her it isn't, I'm never quite convinced that she believes me.

So here I am, two days with minimal sleep, minimal food, and all I want is a shower and big fat glass of wine. I have had a tension headache all day, and my neck and shoulders are throbbing they are so tense. Where does that leave us? Glad that it's over and hoping for a better and far less eventful day tomorrow.With this child, it probably won't happen because every day is an adventure, but a girl can dream, can't she? :)

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