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.

deck, salamander, and more

picture of the progress of our deck, it's coming along!

dad found a salamander in the holes they dug for the deck; the kids thought it was great and played with him all day and then let it go in the evening

melanie continues to have difficulty sleeping. not sure why, but it is a problem we need to fix.

around her gj tube is leaking like crazy. not sure if she's got a lot of extra pressure in her gut or what, but stomach contents keep pouring out from around the tube. she is changing a gauze sometimes more often than every five minutes as it is completely soaked. all that moisture is not good for the yeast infection of course. we are trying to stay ahead of it.

she is having a lot of urine output, i'm sure aided by the diuril. trying to keep up with her hydration. she has gained 2 pounds since starting the diuril--sounds backwards, but her body seems to third space fluid when it feels "threatened." wondering if having the diuril pull some fluid off her is causing her body to third space. not sure, just trying to make adjustments to compensate.

she continues to show signs of a uti. urgency, frequency, and one of her most common signs--trying to void on her own.the new gel we are trying to help with the bladder spasms is not being tolerated. putting the gel on her skin "hurts" her. it's just a gel we rub in, but i'm guessing it has to do with the extreme sensitivity of her skin and she ends up close to or in tears when we put it on. so we went back to the oxytrol patch today instead.

yes, for those of you scrolling through this message to find mention of the picture on the welcome page . . .that is an ultrasound picture. and yes, it is MY ultrasound picture! and yes, we are having another baby!! i am around 11-12 weeks (ultrasound today said 11 weeks 6 days). due date is somewhere around april 18, 2010. if that date looks familiar it is because that is melanie's birthday! :) we had a couple scares in the beginning of the pregnancy, but everything looks great now and baby looked healthy and active on today's ultrasound. i have been pretty sick with this one, but B6 and unisom help. the kids have known for many weeks now (we had to tell them back when melanie had her gj tube replaced because i was not able to go back in the room with her due to the radiation), and we have been very impressed with how well they have kept the secret! now that i'm almost in the 2nd trimester we will let them start telling people. we are all very excited!

11-12 week ultrasound of newest memeber of our family

yes, Baby is doing a headstand in this picture! he/she was very active

didn't remember until i picked up the diuril that you are supposed to avoid exposure to the sun while on it--i remembered as soon as i saw the bottle from when melanie was on it before. i called the light therapy office to see what we do about it. they said, "she HAS to have the light therapy as nothing else is working and her skin is in such bad shape." so they called the nephrologist to see if there was anything else he could put her on. he said she REALLY needs the diuril and it is the best choice of medicine for her. so, being she really needs both the medication and the therapy, but they contraindicate each other--we are going to do both and be very careful. we had to turn down the level of melanie's light exposure (and duration of time) in the uv light box. diuril makes the skin more sensitive to light and will burn more easily, so we are just watching her close. she had her first dose of diuril on thursday then lower-dosed light therapy on friday. she didn't burn, so that's good. we are going every monday, wednesday, and friday; unfortunately, we are seeing no results. the condition of her skin is not improving and, if anything, it is getting worse. she frequently has spots that are open and bleeding. she has an area on her face and one on her belly now. she has also developed a yeast infection around her gj tube. hoping that does not spread to infect all the open sores on her skin.

one affected spot on melanie's face

open, bleeding spots on melanie's arm (there is cream on it)

melanie in the light therapy box with her "fishy" goggles

melanie in front of the light therapy booth with 'pinky' the puppy

waiting for light therapy watching video on demand

working on a puzzle while waiting for light therapy

here are some pictures from kids day america from last saturday:

couple pictures from thursday when i set up the sprinkler for ethan:

my dad and scott dug the holes for our deck today. the first three gave them quite a hard time with rock and clay. a lot of back-breaking work. the last two were nice black dirt, and they zipped through them. some pictures of the work:

melanie watching them work.

not much else to update. hoping to get some answers and help from melanie's neurology appt on monday. also anxious to see how her liver functions are doing after the jump last week. during some tummy pain today her face became flushed and her temp rose to around 100. she used her TENS until which she has tried in many, many months. she kept it on for quite a while and eventually she said she felt better. her face was no longer flushed, and the low-grade fever was gone. hoping she will start using (and getting some benefit) out of the TENS unit again--gives us one more tool to help her when she is in pain.

brandon had a headache everyday this week except friday. he was getting motrin too often, worried about rebound headache; so we switched to using tylenol for the "low pain scale" headache days. tylenol had not been effective previously, but we had been waiting until it was worse then. now we are trying to treat it right away. he had a headache again tonight. i talked to his pediatrician this week. she had given a few options but i was hoping it was just a bad week and would get better. we'll have to decide if we go to neurology, start a different prophylactic medication, do head imaging, etc. i'll have to talk with her on monday because the school is wanting a more specific protocol as to when to give tylenol versus motrin versus imitrex and at what point is it too many days of motrin. we have a "rough" protocol (tylenol for headaches 1-4, motrin for headaches 5-8, imitrex for headaches 8-10). however, if he has a number 5 headache three or four days in a row--that is too many days to have motrin (causes rebound headaches). so we will have to get that figured out.

our big porch swing thing fell over and landed on ethan's head last night. of course head wounds bleed like crazy, so he had lots of bloody, matted curls. the actual cut looked a couple inches long at first, but when i finally got the bleeding stopped and some of the blood cleaned up, it's only about 1/4 inch. the edges aren't totally closed, so it bleeds a little off and on; but he seems to be fine. brandon sure felt bad for him and was in tears after seeing all the blood.