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Little T has high blood pressure

As I write this, Little T plays with the Tivo remote. He press the thumbs up sign and makes it go "Ding". He laughs then says "gah gah". This afternoon his doctor said, "If you see his blood pressure get this high again, call immediately. He's at risk for a brain bleed." His first diastolic blood pressure reading was 85, higher than mine, and he's a baby. Babies are supposed to have much lower blood pressure. Hypertension + low platelets = risk of brain bleed. His platelets are 91 today (basically the same as last week), fibrinogen 113 (down from last week). He weighs 10.132 kg. He is 69.7 cm long. His tumor is 21cm wide and 17.5 cm long.

Poor guy had his blood pressure taken again. Three times. It would have been four, but they can't take his blood pressure on the arm that has his tumor. So instead a full go is two legs and his right arm. A nurse had taken his blood pressure. Usually Evelin, a medical assistant does it. Evelin's always smiling, very sweet, even remembers Special K's name. Evelin is supposed to cover the front desk right now, but Little T really likes her, so they brought her back just to do his blood pressure. Little T grinned at Evelin and said a big "Gah" by way of greeting. Hope rose within me. I said "The nurse raised his blood pressure. He was fussing. It was just an off reading." C replied quietly, "She retried it before she took that reading." My little bubble of hope popped.

Evelin opened the cuff with the familar sound of velcro ripping. Little T peered down at the blood pressure cuff and furrowed his brow. He grunts in protest. My boy is smart. Evelin put on the cuff then jangled her phone in front of Little T to distract him. Not good enough. He hates the squeezing of the cuff and he'd endured it several times already. He opened his mouth to cry. Then an unexpected treat, she offered him the phone. He loves to play with phones. Evelin's a genius! He pressed the keys and pretended to talk on the phone. But he did look puzzled. He raised one eyebrow as if to say "Why do I get extra torture today?" If his blood pressure readings had remained at 85, he would have been admitted immediately to the hospital and put on blood pressure meds. Fortunately for him, his blood pressure was lower, but not normal.

The steroids are raising his blood pressure. He may have to go on blood pressure medication. We go in tomorrow to meet a new specialist, Nephrology (one we haven't met before though we've met a lot of specialists). They'll take his blood pressure again and discuss whether to put him on meds. If we do put him on meds, we'll have to decide if we want him to spend the first 24 hours in the hospital. His blood pressure could crash since it's very tricky to get the dosage right for a baby. If it crashes..bad things..I've seen it before..brain doesn't go there. He may need emergency care. On the other hand, a hospital stay also exposes our immunocompromised child to the nasty germs of the hospital. He has a bad track record of catching nasty germs and returning for a repeat visit. Gods, I hate making these types of decisions. But yes, it helps to know about them ahead of time even if we won't make up our minds until we're there.

We tried to buy a blood pressure monitor. We called around. Of course pharamacies have a wide variety, but none with cuffs that fit a baby. Adults needs their blood pressure monitored, not little babies. It's just one of the small ways that the world tells us that Little T is not normal, and should not be this sick. Little T cruises across the couch and shrieks with delight. He made the Tivo go "Bong". It's hard for me to reconcile that with "brain bleed". I understand it in my head, but not in my heart. But the fact that we can't find a damn pediatric cuff anywhere. We have to drive to the hospital to get one. Well, that makes me want to cry.

Comments

( 7 notes — Leave a note )
goldenlily
Jan. 18th, 2006 05:47 am (UTC)
Not sure if it's helpful, but you can buy ped cuffs on the net. Means you might have to learn how to take BP measurements or find a monitor it'd work with. I just did a search for pedriatic blood pressure monitor cuff
waterowl
Jan. 19th, 2006 08:45 pm (UTC)
Thanks for taking the trouble to look up stuff. :^) We did an online search, but we needed things immediately.
frumiousb
Jan. 18th, 2006 06:15 am (UTC)
I'm so sorry. I hope that this passes as soon as possible.
plantgirl
Jan. 18th, 2006 07:39 am (UTC)
Poor guy. I'm so sorry his blood pressure is being wonky.
tdgor
Jan. 18th, 2006 03:49 pm (UTC)
Oh, dear. What a rollercoaster. {{{T}}} {{{T's mom}}}
whymommy
Jan. 18th, 2006 11:30 pm (UTC)
Poor little guy. Evelin is a rare treasure. It's great that she's available and is so in tune with him. Keeping you in our thoughts and prayers!
choiceful
Jan. 19th, 2006 01:13 am (UTC)
You're in our thoughts
( 7 notes — Leave a note )