Sunday, July 12, 2009

Her corn storage was full

Six hours at the pediatric ER in the middle of the night to find out her corn storage was full. Now, that is not what the doctor said, but they were so damn unreliable that I had to make my own diagnosis.

A few years ago my sister and I realized by observing that since all vomit contains corn, vomiting must be caused when one's corn storage gets to capacity. Hannah's corn storage got full about 1:00 a.m. on Saturday night. We woke to the sound of the gak (something a little like the call of the wild, not a sound you can easily ignore) and of course I panicked out the outset, since MCADD kids are supposed to be seen at a hospital upon any vomiting or diarrhea since they can decompensate very quickly when blood sugar goes out of whack. I knew she had eaten a meal between 7:30 and 8:30 p.m., not all of which came out as corn, so I knew we had some leeway, but as soon as we changed her to a fresh set of jams and bedclothes we got round two. I knew then we were going to the ER, and Lord Honey would stay behind with the other kidlets. A small barf number three convinced me to leave (and might have made me go through a red light or two when I had stopped and identified that no one else was on the road). Of course I cried when Hannah wasn't looking and drove on up, trying not to think of sad songs. As directed, I approached the triage nurse with the emergency letter I'd been given after Hannah was discharged last August and explained what MCADD was and said we should be seen immediately. They got that part right and had us in a triage room quickly, where Hannah flirted wanly with everyone, especially those who called her pale. A quick blood sugar check gave us an 84 which they said was great and they had us go back to the waiting room to wait to an exam room. Now, we didn't wait a long time because frankly it was not as busy as they often are but we got taken back to a room after 15 minutes or so.

A nurse said they would be calling the metabolic doc on call but first we could try Pedialyte and see if Hannah could keep it down. I said gosh, she hated it the one time I gave it to her, so if you want to do a trial of keeping food down let's use her actual food, breast milk, which I have lovingly pumped out of my body for the express purpose of nourishing her(!!!) rather than crappy tasting Gatorade lite. The nurse said well milk can be hard to digest but she understood why babies might not want Pedialyte and theirs wasn't even flavored. Now, was she dumb as a post or did she relay this info through four other people who garbled it, I don't know, but someone tells the doc (but not me) I have refused to let them give Hannah a glucose IV (which is in fact the reason I am there, since my understanding is that if she needs one nothing else will do) so after the baby takes an ounce and a half of milk, keeps it down, sleeps until a new glucose check requires a new blood draw by an inept tech who fails to draw enough to test, then she takes two more ounces of milk, two exams by the pediatric fellow, then the actual doc comes in and says "Well since you refused the IV we will need to get the labs before we call metabolics (!!!)" at which time my head exploded and was scraped off the ceiling tiles by an underpaid troll blah blah blah at which time I said, no, I refused PEDIALYTE and if the metabolic doc says an IV is needed then GIVE IT TO HER NOW, THREE HOURS AFTER WE CAME IN and if they tested her sugar and it was fine what was the deal? She said metabolics preferred her up at 120 not down at 84 which of course I would never know the expected numbers because they don't want me testing her because the sugars might give me false security when her metabolic cycle is really whacked out and she needs medical evaluation and labs done. Despite having been told 84 was good, now 84 was not good enough, but they thought she'd be better now she was keeping tiny bits of milk down. So, I say, does my baby need IV glucose or not??? Well if she is keeping food down now, probably not but let's run the metabolic labs and get back to you.

The first nurse we saw was apparently leaving early and didn't want to get stuck with the paperwork for an infant IV blood draw because she told the tech that Shawna (the replacement) could do it after she glanced at her watch and tapped her motherfucking foot. So we waited for the new nurse to come on shift, get up to speed on Hannah, then call the IV team who were on another floor, but who, bless them, were better at sticking a baby but they get a fail on taping the baby arm to the immobilizing board as she now has a big red tape burn. They left the IV cath in her hand in case after the "special" labs were run they still wanted to do a glucose IV (remember, the IV is what I thought I came in for, four hours previously). They told me the labs could take a while then they'd talk to genetics on call and get back to me and it might be two hours, so I pumped and comforted Hannah and got her to sleep and passed out in a chair at an inappropriate angle for all of fifteen minutes until the results came back about 75 minutes after the test, and we were discharged as all her labs were normal.

So, what did I learn from all this? 1- I need to give more directions to the hospital staff, and just take charge. Even with all this education when it comes to my baby I believe I should be putting my trust in the folk who are in the know, but they blew it on three different points in how Hannah got care, even as described by the metabolics doc who also works there. 2- My instincts are not wrong. So, my instinct that she should go in was right, as at the time she was puking she made ketones but then, as soon as she could eat and hold down breast milk she really stabilized in every way. When I talked to the on call doc on Sunday afternoon he said if I had only called in he would have sent me in to the ER just based on her age and the vomiting, he would have preferred they had followed the emergency letter and done the glucose test, labs with an IV, and called him instead of dicking around for four hours, but the ketones tell him she was not great however she righted herself. 3- I love Hannah beyond words, dammit. 4- I look forward to not pumping anymore but if you try to tell me breast milk is indigestible I might gouge out your eye with my very flexible pump tubing and it won't be fast. Do not come between my baby and my fucking pumped milk. I am much, much meaner than I look when I am wailing in your exam room at two in the morning. 5- You remember a time when you cried until you sobbed and the sobbing wouldn't stop right away and every time you took a deep breath and it would catch in your chest from the spasms in your ribcage like a half sob? It is heartbreaking for a mom to see her baby do that. 6- I am only taking back some of the nice things I have said about nurses. 7- Sale on corn.

1 comment:

  1. Oh poor sweet Hannah! I'm glad she wasn't admitted and I totally trust your instincts! Your are an awesome mommy!