Our Family: stopping the torture but still no answers!

derm officially decided no more wraps, so at least we are officially done with the torture! however, we've never seen a note or orders from neuro. no orders for the labs, the urine, or the capsaicin. i wanted to try the capsaicin at the hospital before we go home, especially after reading that in some people it can cause burning. no need for us to get home only to find out it burns her skin and she can't tolerate it. then we are back to sqaure one, outpatient, and stuck playing phone tag, waiting on doctors to call back and with nothing to do to help her. but in order to try it before we leave it's gotta be ordered! hopefully neuro comes by tomorrow morning and gets things rolling. seems like they are "hiding" since it's all pretty much been put on them and no one has any answers. derm was almost giddy this morning when they came in and kinda "signed off" on melanie saying it appears to be mostly a neurologic problem and so she's in the hands of the neurologists. not that i really blame them, i'm sure it's frustrating and humbling to repeatedly have to answer a mom's questions with "i don't know" and "sorry for the lack of answers." i appreciate their honesty; their comment today was "well, we pretty much didn't do you any good." they also commented that the dressings caused more harm than good--again, appreciate the honesty. i know they tried, but i'm sure it feels nice to let someone else take over when the problem appears to everyone like something nearly impossible to solve.

the consequences on her body of the past two days of torture our now being realized. her gut (which barely has any function at baseline) is totally acting up--pressure popping tubes apart, stool backing up into her stomach, tummy pain, having a hard time getting meds in without increasing her pain, etc. continued autonomic disturbances with pupil dilation, irratic heart rate, lower SATS, etc. she was not very happy most of the day. completely exhausted and just feeling rotten from the level of stress her body has been under. she desperately wanted grandma and grandpa to come visit. though when they did, they pretty much got the cold shoulder the whole time. however, if they'd leave the room to go get something, she would immediately wonder where they were and want them back. she was not fond of the doctors and nurses most of the day, although she was cooperative with her cares and vitals (except when the neuro team was in this morning--after which i syringed out a bunch of gas and "nasties" from her stomach tube and her behavior much improved). she misses her brothers all day but when they come she is not very nice to them and wants them to leave.

PRETTY MUCH THE STORY OF TODAY: EXAUSTED, GRUMPY, AND NOT FEELING WELL

HEADING OUT TO GO TO THE LIBRARY

PICKING OUT DVDS AT THE HOSPITAL LIBRARY

we were going to just use our home supply of tpn during this hospital stay since it is sooooo much easier for everyone and guarentees the exact same formula/rate/volume for melanie. apparently someone got wind of us using our home supply (which the doctors all wanted us to do) and made us use the hospitals supply because it is 'policy'. so we had to switch to their supply. the hospital's pumps aren't able to ramp down the rate, so i made sure they ordered blood sugar checks after she comes off the tpn. she came off for the first time at 2 p.m. today. she had just recieved iv benadryl as pretreatment for the blood transfusion. she became very "drugged" appearing, wobbly on her feet, etc. she does not respond this way to enteral benadryl, but i just figured it was from the iv benadryl. thankfully i had already had them order a blood sugar check because at the time i wasn't thinking anything could be wrong with her blood sugar (she has not had hypoglycemia since before march of this year--it has not been an issue at all since then). when the lab came melanie was laying in bed almost asleep--extremely unusual for her, no matter how tired she is she will NOT nap during the day--we were assuming it was from the iv benadryl. turns out it was from hypoglycemia with blood sugar of 48. we hooked her back up to her tpn to bring her sugar back up. as soon as her sugar came back up, she sat up in bed and no longer looked drugged. i was kinda hoping we had actually found something that would make her drowzy (we don't have any/many meds that will help her sleep when she has trouble falling asleep). unfortunately, it wasn't a side effect of the benadryl, it was a side effect of hypoglycemia. so we ran her tpn and then manually slowed the rate over an hour and she was able to hold her blood sugar after that. good thing because she needed the blood transfusion and tpn can't run at the same time as the transfusion. so anyway, blood sugar has not been an issue whatsoever for many months--even when she was taken off tpn without a ramp. we don't know if she is going to "cycle" back into a time where it will be a problem or if this was just a one-time thing and just another way her body is going hay-wire from the incredible pain and stress she has been under.

she ended up getting quite a bit of extra iv fluid today between the extra tpn to keep her sugar up, the blood, the saline run with the blood, the piggy pack bag of saline after the blood, etc. that, in combination with the transfusion itself, has really lowered her heart rate which hopefully means her body is working less hard. she was finally able to go to bed at a good time tonight and was asleep by 6:30. hopefully her body can rest and recup tonight and decrease all her symptoms.

THANK YOU BLOOD DONORS!!!!!

they had a magic show in the playroom this afternoon. melanie really enjoyed it; it was especially neat that the kids got to participate. brandon and ethan got there just for the end, but brandon had fun trying to figure out how he did the tricks and ethan thought it was fun too.