pictures from peds floor, doing better

lots of pics of melanie and her new baby . . .

hugging baby and doing neb:


feeding baby a bottle:

the next three she is actually sleeping in, various positions she was in last night:

talking to her new baby:

hugs for the new baby:

opening her gift:

doing beads. she and i meticulously filled the entire square with beads! this is after the hair was, but only about 1/3 of her hair is combed through

after getting her hair washed

snuggling with pinky her puppy

visit from dad, brothers, and chocolate

getting a platelet transfusion plus all the other ivs

saw these kinds of numbers pretty consistently for about a week, thankfully better now: heart rate 170, respirations 40 (more often was near 50), oxygen SATS 89

well, i still have no news. for some reason, they never came to draw her labs this morning. called them twice and they came at 8. got some of the electrolytes back but not the cbc (with platelets!). nurse made a bunch of calls and finally found out the blood was lost. had to call the service, they put in a request for redraw, now still waiting on labs to be redrawn. how frustrating! melanie is looking good. still blood in her stool and slightly red-tinged urine. she has some new bruising and petechiae on her right wrist/arm that weren't there before. but nothing we can do or will know until those platelet results come back! she's been playing quietly in her bed this morning. we've played with her new doll, fuse beads, read books, and now she is playing ps2. still too weak to sit up but can prop up on her elbow. anyway, we just sit and wait. ugh.her respiratory rate is a bit higher today than yesterday, not really sure why. heart rate is still down since the red blood cell transfusion.i laid down around 1 a.m. and decided to try to stay laying down as long as i could. the result was that no one made sure her g-tube was draining (the hospital beds are angled up on the sides, so you have to manually push the side of the bed down to get the tube to drain well enough), and this morning she and the bed were soaked in gastric contents, bile, and probably stool (the pressure is so high in her tummy that if it can't drain down the tube, it is just forced out around the stoma). very frustrating that as i try to take care of the baby, melanie suffers.her urine seems suspicious for enterococcus this morning, but she does not have any other symptoms so i will just keep an eye on her and culture if she develops more symptoms.i'll update if i can when the labs are back. sure hope they are back before i go to my appt!

pictures from picu

here are some pictures from the last couple days:

our good friend shari reading melanie a cinderella book!

managing a half-smile with her new iv

this is the big smile i got when i told her she had 101 guestbook enteries (she is very swollen with fluid)
"dealing"

before being moved to the picu

tyelnol/motrin are put in the small tube on the left of this picture (her jtube which goes into her intestine) the h1n1 virus has caused everything to go backwards, so you can see the pink tylenol had backed all the way up to her stomach and is now coming out the bigger tube on the right (her gtube which goes into her stomach). the far right tubes are iv lines. this is at home before we went to the ER.

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.



MELANIE HELPING WITH A MAGIC TRICK

ETHAN HELPING WITH A MAGIC TRICK

hospital

managing a smile

melanie was admitted to the hospital today. trying to get a handle on her skin problems. right now she is wrapped in smelly medicine, wet gauze, blankets, and a mesh dressing. not a pleasant combination for anyone, but add to it her neuropathic and peripheral pain and we've got an unhappy girl. we had so much fun in the playroom before they wrapped her up; she was so sweet and happy and having fun. she was so tough through getting the medicine slathered on her, getting her arms and legs wrapped in wet gauze, blankets, and mesh. it was obviously very uncomfortable for her, and her eyes kept welling up with tears but she was holding them back. however, she was so tired and when they asked her to stand up so they could wrap her back and chest she couldn't hold the tears anymore. she cried quietly into my shoulder as they finished up. she has been a real trouper, trying to forget about it but cries in pain about every five minutes. she says it really hurts her tummy. they were going to wrap her whole face and head but decided against it at least for tonight. the plan is to come in every three hours, unwrap old wraps, and wrap her with new ones. this is done every three hours around the clock. they had never wrapped a kid with so many tubes before, so that was a challenge, but we made it work. we will do the changes every three hours for a while but we may call it quits for tonight around 11 so she can get some sleep then start over again in the morning. if she misses too much sleep it will cause all kinds of trouble with all the other medical issues; so we will try to not let too many other issues get out of hand while we try to fix one.tomorrow neurology will consult. most likely the intense wet dressing wraps (and in her mumified state she will not be able to scratch) will help her skin look better. however, it is just a band aid and they are afraid everything will return once the intensity is stopped. so neurology is supposed to be deciding between three different meds to start her on to help longer term (substance p, methadone, and remeron). not sure on whether we will be doing a skin biopsy or not, neurology will also be deciding that.i think we are in for a long night. hopefully we will both get at least a little sleep. my head is already hurting.

itchy skin, leaky tubes, junky lungs, flushing face, but still fun times

our picture wall--complete with 8x10 picture of our new baby!

pretty much same old, same old around here. if anything, melanie's skin is worse. we started having her wear gloves all the time, but i think it's kind of backfired. she takes them off in her sleep and scratches until she bleeds. she takes them off a little during the day, and the scratching seems even worse. she scratches with the gloves on too, of course. looks like she has new patches of scratched-up skin on her back, belly, and different spots on her arms. we are going to see another, different deramatologist on monday to see if she has any other ideas. sounds like a skin biopsy may be in the near future.

her gj tube continues to give us trouble. stomach contents are just pouring out around the stoma like a faucet. she is soaking gauze after gauze. i can pull stomach contents back through her g-tube with a syringe, and it is still draining into her drain bag; but it seems that the pressure is so high it is forcing it out around the tube faster than it can drain through the tube. her pediatrician thinks her stoma needs tightened. will have to be contacting the surgeon again.

she has been having trouble with "junk" in her lungs (we think) when she wakes up in the morning. lots of coughing and throat clearing. tuesday it was really bad, and she became quite distressed, face flushed, temp elevated, heart rate elevated, struggling to clear her lungs, increased respiratory rate, etc. we did all her inhalers and neb and she still didn't get relief. it lasted for quite a while and slowly tapered off throughout the day. she was crying she was so distressed over it in the morning. she hasn't had that much trouble with breathing/coughing/clearing secretions for a long time. we are trying to do her inhalers and nebs as one of her first cares in the morning now. she is still having issues, but not as bad as tuesday.

the melatonin is definitely helping melanie fall asleep faster at night. she still wakes up in the middle of the night and sometimes early in the morning, but overall i'd say she's getting a little more sleep than she was.

she is still having irritable times, especially when her g-tube is not draining adequately, but we are increasing her lyrica more which seems to help with some of the stomach pain. she has been having intermittent blood clots draining from her g-tube which is a chronic, intermitent problem.

she has been having autonomic facial flushing at least once a day, usually in the afternoon. most times it includes an increase in temperature, but we are not sure what it is related to.

yesterday the kids and i made fall cut-out cookies. we colored our frosting to make orange pumpkins, green apples (ethan requested the green :), and purple flowers. the kids had a great time and melanie wants to make more again today.

ethan wasn't feeling the best this morning, headache, tummyache, slightly elevated temp (99.5) but he seems to be doing fine now. not sure if he is coming down with something or if it was just a transient not feeling well.

for some exciting news . . .our deck is complete!!! a huge thanks to my dad who put in many hours working on it alone (while scott was at work). scott helped when he got home from work, and they finished it last night! we are very excited! a little warmer weather and we could enjoy it more, but i think scott is going to try to get the grill up there and throw some burgers on tonight. yeah!

ethan getting ready to go out on the deck

as for me, i'm feeling ok. still not well enough that i dare skip a day of b6 and unisom, but i am thankful those things are helping me feel better. waiting for that "burst of energy" that is supposed to come in the second trimester . . .??

a couple pictures from when ethan and i went to the apple orchard this week.