Tuesday, March 6, 2012

Le Sigh...

Okay, so I guess the quiet couple of days that we spent just waiting for counts to come back up were just the eye of the storm, because all hell has broken loose in this tiny little hospital room. Yesterday, Sarah needed platelets, so they transfused her, and they gave her "premeds" which just means that they give her either tylenol or Benadryl to keep her from having a negative reaction to the transfusion, and since she has had a negative reaction to antibiotics in just the last week, they decided to give her both, which made her sleep most of the day. A cup of very strong coffee was my very best friend, as Miss Boots didn't get tired and finally settle down until 5:00 this morning. AM, y'all. I am not kidding. This would not be ideal even if we were home, but I suppose in the last few months of being in the OICU, I have taken for granted the calm and the quiet that goes with having only a small handful of patients in the wing. And it probably doesn't help that the room we got has construction of the new tower right outside the window, or that it also happens to be conveniently located directly in front of the nurse's station, which may as well be Grand Central Station for all the noise they're making. I understand that most humans are diurnal, but still.

She spiked a fever from the neutropenia (meaning she has no neutrophils, or white cells) and the normal bacteria that usually resides in the body is starting to turn against her. She's getting a diaper rash, they have her on two antibiotics again because of the fever. She is complaining of stomach pain, and the doctors are concerned because one of the complications to watch out for at this stage in the game is an inflamed intestinal tract (they had a fancy name for it, but I'm lucky I remember MY name right now), so they ordered an ultrasound, and possibly a CT if they find something on the ultrasound. She is also not eating, so they are putting her back on TPN (IV nutrition) so that her body will stay nourished until she starts eating on her own again, although since she will be receiving all of her nutrition through her IV, her body will not feel hungry, so I should encourage her, but not really expect that she's going to eat much. She got blood today, which meant more premeds and more sleeping, but with construction and the Grand Central Nurse's Station, plus the foot traffic in the room every five minutes, I finally gave up on sleeping and opted for a cup of coffee instead. Ah, coffee. You're my only friend.

Through all of this, I have plenty to be concerned about, but for all of the medicine, I know she's in good hands. I pay attention, I educate myself and I know that the doctors and nurses are going out of their way to make sure she is more than taken care of, and there are nurse managers that even come in on a daily basis to ask if there are any problems or concerns, and how they can improve upon the service she is getting here. I know she is more than well-covered in that aspect. In the two and a half years that she has been coming here, I have only recently had an issue with one of the nurses, and she's new. No, what concerns me most at the moment is not the medicine. It's the fact that at this point in time, two weeks away from transplant, all of these complications could not only set her back health-wise, but they could also keep her from getting to go home before transplant, and I know she needs that break. I could use it, too, believe me, but  I have the option of calling in reinforcements to come in and take over if I feel like I'm going stir crazy. She doesn't. She needs that break in between to see her home and her things, to be in a place that she feels safe.

Since she was re-diagnosed in early December, Sarah expresses a desire to go home at least once a day, but a short sniff and a whimper later, she is over it and laughing and playing happily with her dolls. Her bouts of homesickness are usually short-lived. But last night, be it from the fatigue from having slept all day and being transfused, or having been here for so long cooped up in these rooms, or just plain ol' sick and tired, my happy-go-lucky baby girl broke down. Like seriously broke down. I have never, in the two years that she has been undergoing treatment, throughout all of the horrible things she has withstood, I have never heard my child cry with such despondency. She cried as though she would never see her beloved home again. My heart ached for her, and all I could do was climb into bed with her and hold her, sing to her, reassure her that everything would be alright in the end.

In the end, as I held my daughter and sang softly in her ear, she joined me through her tears and we ended up singing "Three Little Birds" together. Then we ran through the rest of the repertoire that I reserve for times such as these, some Beatles songs, (Across the Universe, All You Need is Love, Dear Prudence, Hey, Jude, and I Wanna Hold Your Hand are among her favorites, since her infancy) and some other obscure songs that I have picked up along the way. The nurse reaccessed her port because of the fever, she played happily with her Lalaloopsies after I assured her that Tippy may miss her friends at home terribly but that she would see them all very soon, and that I would ask her Ama to bring her Knuffle Bunny and her Glo Worm, and she ended up nodding off somewhere around five in the morning.

I love that no matter how precocious my precious daughter is, she believes in me whole-heartedly, and believes in me in a way that I wish I believed in myself. She believes that I am omniscient and all-powerful, and when I tell her that it's going to be alright, she believes that it is. That is an awful lot of power for someone to have who has absolutely no idea what the fuck they're doing. But what mom really does? You do the best you can with what you have, you trust your instincts, you do what feels right to you. You trust that "every little thing is going to be alright", because in the end, it always is.

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