mostly miserable, but finding ways to have fun

melanie continues to have rough days, but we are trying to find some fun things to help take her mind off the pain.

sunday we had an indoor picnic after church (at the church). melanie had stayed home to rest during the morning then i came back to get her and we all went to the picnic. everyone enjoyed the food and fellowship (melanie enjoyed sitting at the kid table and having her own plate of food to smell). then the older kids played wii and the little kids played with little people. melanie went back and forth between the two, watching the boys play wii and playing with little people. it totally wore her out though. she was miserable on the way home with a migraine. got home and she was nauseous in addition to the terrible headache. got her laying on the couch, gave some nortriptyline, tylenol, and zofran. her heart rate was elevated and came down some after a while when she got some relief. later she had a terrible outburst of yelling and crying. it's the way she deals with pain, but it comes out as anger. we are prayerfully trying to help her find other ways of coping with pain other than the yelling.

monday was misersable as well.

tuesday she was visibly miserable, tired, not feeling well. we went to the gi appt in the morning. melanie was stoic and quiet through the appt. at the end she was pitifully asking to go home. she didn't do as much yelling on tuesday. not sure if she had a different kind/level of pain, was too tired to yell, or if she is slowly trying to deal with pain differently. it's fine for her to say/yell "ow! my tummy hurts!" or even just a general frustrated "ah!" but she is turning it into mean, hurtful words which is not ok. please join us in prayer that we can help her work through this without using unkind words. also, that we can find a way to RELIEVE some of her pain so that it is no longer even an issue! i've got another call into her pain doctor.

melanie is experiencing the "red man syndrome" associated with vancmycin. her face gets very flushed and her temperature increases.

last night we went to the city track meet. the kids were so excited and "pumped up" to run in the race. they each ran the 50 meter with their age groups. the boys had fun running to the finish line of course. i held melanie's hand and carried her drain bag. she ran/walked all the way to the finished line, smiling shyly all the way. she, of course, finished long after all the other girls but didn't seem to mind, and everyone clapped for her. they were also doing the 100 meter, 200, 400, 800, and 1600 and the long jump; but melanie was completely wiped out after the 50 and we needed to go home. i carried her back to the van; she was totally limp and way tired. she went right to bed when we got home and laid on my bed or the floor probably 85% of the day today. at one point in the middle of the day she said, "i can't believe i am still tired!"

brandon just starting the 50-meter dash

melanie, ethan, and brandon before the races


she has developed a few new petechiae and her platelets were a bit low this week. her hemoglobin/hematocrit never fully got into the normal range after her last blood transfusion (usually it jumps her up to like 13).

this afternoon she did go out to swing on her new full-support swing this afternoon. it's nice, she can relax in it. (but someone always has to puh her). she still wasn't feeling very good.

melanie loves to swing, but wasn't feeling good

not feeling the best

as for the gi appt yesterday . . .

it was determined that the risk of trying to get the contrast out of the upper portion of melanie's large intestine was not worth it. most likely the contrast has adhered to the mucosal lining and could not be removed anyway. besides, the risk of perforation is too great a risk with melanie. given that her colon just sits there--doesn't work--and the fact that she has had numerous intestinal surgeries and how "tied up" her intestinal track is with scar tissue, the risk is just too high.

she does have stool in her lower colon that he would like to go in and remove (a sigmoidoscopy versus a colonoscopy which would have to be done to remove the contrast). that will be done this friday. it will be another general anesthesia. a surgeon is also going to surgically remove grannulation tissue from around her gj-tube. she has grown so much that silver nitrate doesn't even make a dent in it anymore.

we also had a long disucussion regarding melanie's colon. he thinks her nonfunctioning colon may be signficantly contributing to her pain. (it is currently disconnected from small intestine and is just *there* not doing anything other than causing problems--requiring surgical disimpaction every six months or so). had a long conversation about a total colectomy (removing her entire colon). the reason we have not gone ahead with this in the past is that we are holding onto hope that maybe someday something can be done and her colon can function again and she can be reconnected. the chance of that is very slim, but i still have a hard time with the thought of removing her entire colon. there is also great concern with the amount of scar tissue in her abdomen (she's had nine--i think--abdominal surgeries--not counting procedures like scopes, etc). scar tissue can hinder the surgeon from seeing the nerves, and damage to nerves can occur. there is also some question that a colectomy may not even be possible for melanie. when the surgeon was in there in december for the ileostomy revision, he said her small/large intestine was "knotted up" and he had a hard time telling which was which (this is why he injected contrast--to see which end of her stoma went up--to small intestne and which end went down--to large intestine). he also had to make a separate incision and use a laparoscope to get a better view of the tangled mess. i haven't talked o the surgeon about a colectomy, but it might be that untangling her intestines is not possible. i don't know. it is such a tough decision. i've been against the idea of a colectomy all along. now, with there being a chance that it is significantly adding to her pain, i need t think about it a little more. thing is, there is no guarentee taking the colon would improve he pain . . .and no guarentee she wouldn't come out of surgery with nerve damage. obviously this is something we will be thinking and praying about for a while. in the meantime, we will get the lower part of her large intestine cleaned out on friday. see if that has any effect on her pain.

it is hard to believe brandon is done with 2nd grade! he was very excited for summer to be here, but teared up when mentioning that he won't have the same teacher next year. we have been so blessed with wonderful teachers. brandon's teacher this year has been so great. brandon really loves her, and she has been a blessing to our family.

as i was looking through brandon's end of the year folders/notebooks/papers, i came across a paper where they wrote what they would do if they had a million dollars. brandon's answer about brought tears to my eyes. he said he would use $100 to buy legos so he could build a lot of things. then he would donate the $999,900 to mom to pay for his sisters medical bills because she has lots of medicines. that just amazed me.

rough days

melanie has had a pretty rough week. she has been very irritable and trying to deal with pain. she spends a lot of time on-edge and not wanting her brothers near her or anyone to talk. any little thing can set her off into a tirade. many times she doesn't want me to touch her. she says she won't tell me where it hurts, she doesn't want anyone to talk "when i feel like this." she will cry out and i will ask what's wrong. she will say, "i can't tell you; i dont want to talk about pain!" mornings seem to be the worst and sometimes again in the evening. during the afternoon she usually does well with distraction.

we had coupons to old country buffet, so we went wednesday when scott and brandon got home. after we were there i realized it was the first time we have ever all gone out to eat together! melanie takes in the surroundings with almost infant-like awe. she looks around wide-eyed, commenting on everything she sees. she had fun playing with a plate of food. the salt and pepper shakers had a little less in them by the time we left (she used them to "decorate" her plate of food). she enjoyed crunching on some ice, taking in the surroundings, and decorating her plate. about 30 minutes after we got there she all of a sudden started crying and wanted to go home. we were just finishing, so she settled in against daddy and rested. her skin was terribly mottled all over by the time we left.

thursday was another of the same . . .rough morning, very irritable, but managed to get through. she came outside with us in the late afternoon and "played" kickball with me, the boys, and some neighbors. a neighbor girl held melanie's hand, helped her kick the ball, and walked around the bases with her. melanie thought that was really neat.

friday was a rough start to the day again, though not quite as bad. early afternoon i took melanie and ethan to the library which they always love. then we went to a friend's house. both kids had a great time there. i was afraid the evening would be awful after the energy she had expended, but she actually did pretty well.

today was another rough morning. i think i will try to get her pain meds in earlier or something, because the mornings are really tough for her. the rest of her day wasn't too bad, though she must be quite tired. she spent a good portion of the day laying on my bed. she asked for bed before 6 tonight. however, as i emptied her ostomy i could see it was coming loose and had leaked a little on her ostomy belt. so we had to do a quick change. she was not a fan; she just wanted to go to bed. but she did ok, i did her chlorhexidine scrub, and she was off to bed.

it must have been tuesday afternoon that we all went to a small park near here. the boys enjoy a park, of course; but it is such a rareity for melanie that she is beyond excited! she sure loves to *soar* on the swings!

brandon helped her go down the slide.

today melanie and ethan were being puppies, and brandon was their owner. had to snap a pic.

we go on tuesday to meet with gi to discuss the enlargement of her liver and spleen and also discuss the contrast in her colon that's been there since nov/dec.

i am hoping the increased level of pain and irritability is at least partially being caused by the vancomycin (iv antibiotic she is on for two weeks to make sure all the bacteria in her bloodstream/port is gone). she's still got another week left on it. just hoping this is not her new baseline.

going home!

cultures are still negative! as soon as the doctors round and we get the paper work, we are outta here! i've had a terrible headache since last night, and of course i had to get up to beeping pumps all night. melanie had a tough time getting to sleep last night, didn't help that the blood transfusion was going, so they'd come in every few minutes to check vitals. we're ready to be home!

good day!

6 p.m. blood is here and running. thank you blood donors! she is starting to get her typical facial flushing, and heart rate is a little elevated but she is doing well.

-----------------------------------------------------------------------------------------

today has been a good day. melanie has had some pain but much improved from previous days. her energy level was better today as well--surprising since she is still anemic, but perhaps the decrease in pain has allowed for more energy. she even walked for the first time in a week. a little wobbly but really pretty good.

scott and ethan came this morning, and we all had a fun day together. we colored pictures, played in both playrooms, ethan and i played memory, scott took the boys outside to run around, we ordered pizza for lunch, now melanie is resting watching a video and scott took the boys to the park and then they will go home for the night.

scott brought the swing i ordered for melanie to the hospital. it has more support so if melanie has one of the dropping episodes while swinging she will not fall. we hung it up in the small playroom, and melanie had a great time swinging.

right now we are waiting for melanie's blood transfusion to come. we knew she would end up needing one before we left the hospital; hopefully it will help her feel better too.

coram is sending down her iv vanco and iv zofran tonight, so we should be all set to go home tomorrow as long as cultures remain negative--which they should. we will be checking a couple trough levels during the two weeks she is on vanco at home to make sure the dose is right for her. we will also do another culture about three days after she stops the vanco to make sure her port is still clear.

we should be getting out tomorrow morning after rounds! thanks so much for all your prayers. it has been a rough week on melanie, but it could have been much worse. we appreciate your love and support and prayers more than you will ever know!

negative cultures!!

yep, that's right; we've got one 48-hour-old negative culture and one that's been negative for 24 hours! yea! gotta wait another 24 to make sure the one from yesterday stays negative then it sounds like we can get out of here!!! i am so thankful they will send us home with the vanco! the plan is to go home tomorrow! ID said we will be able to run the tpn through her port, so that shouldn't be a problem. the vanco will be every 8 hours, running over an hour. we will check weekly labs plus at least one vanco trough. we are ready to be home!

yesterday melanie's energy level was way down. she was so tired; even talking seemed to take so much out of her. she spent 5.5 hours--literally--laying in bed breaking up cereal into tiny crumbs.

her tummy bothered her off an on all day, but it seemed slightly better. she was pretty short with anyone who came in the room. didn't want anyone to talk, etc. she was cooperative with her vitals and cares; just wasn't her smiley self.

when she finally tired of breaking up cereal, we went to the library again. then we went outside, once again looking for those elusive bunnies. :) didn't find any in the courtyard then we went out front. didn't see any there either, but we watched "helicopters" drop from the trees and threw a few in the air.

she tired of that then we went to the playroom and then back to her room where she played play station. as soon as she shut it off at 6 p.m. she fell asleep almost before her head it the pillow. checking blood counts this morning and drew one more culture.

brandon spent the night here at the hospital tonight which i think has really helped him deal better. after melanie went to sleep brandon and i had a "grape party." :)

melanie was happy to see brandon here this morning, and he even got some laughs out of her! she is more talkative and playing game cube wth brandon right now, looking really good. hopefully she will have a good day, and we will be home tomorrow!

thanks so much for the prayers for her peripheral line to hold. it has done amazing allowing her to get a bit of tpn over the last week.

busy day and finally a negative culture!

melanie was pretty wiped out after our morning adventues. she sat and then laid on her bed and broke up/crumbled cereal into tiny pieces for nearly three hours.

her meds started wearing off and she wasn't feeling good again. they had a video kiosk that they brought in which melanie had fun with (more on that later).

then we went out to the courtyard again. pastor bruce met us and came out too. we looked for bunnies again but they must be hiding.

then we went to the playroom and then i pulled her in the wagon.

trying to keep her mind off the pain, but she was still having a tough time. got swiched to iv zofran, so she got some of that in the afternoon; i still had a hard time getting her j-tube meds in.

our wonderful friend and hair stylist came and got through the rest of melanie's hair (thank you so much, christie!).

scott and the boys brought chocolate to visit. melanie has missed him so much; she was very excited to see him!

the boys didn't get to come wednesday, so they were happy to get lots of hugs. brandon is having a tough time and had lots of tears while here.

our friends rachel and maddie and belle came to visit and brought melanie some really neat homemade wall-e stuff! melanie slept on the pillow all night. she has a matching shirt and keychain that we put on the zipper of her tpn backpack. thank you so much rachel!

melanie isn't having as much pain so far this morning; i am very glad for that! praying it continues! yesterday's culture from the line was negative which is good news! if the one from today is negative for 48 hours we can talk about going home with 14 days of iv vanco. haven't figured out yet how we will administer tpn--not sure if it should go through her port. ID is still thinking about it. her platelets are slowly trending back up, so she will not need a platelet transfusion! her hemoglobin is lower than we usually let it go; not sure when she will be getting the blood transfusion of packed red cells.

the art of distraction

melanie woke up not feeling well today. continued tummy pain and nausea. she has been dealing with it fairly well. not wanting her nurse in the room much, but at least being cooperative when she needs to check vitals. getting her meds in is really becoming a challenge. either the pressure is really high and pushes back out and/or giving a med causes a lot of pain. it's taken all morning to get neurontin and tylenol in. she still needs all her other meds plus she is needing zofran now. hoping they will switch zofran to iv so that one doesn't have to go through the tube too.

not feeling great

i did get her ostomy changed today. it had been on for a week and thankfully no leaks. also got her hair washed. it felt really good to get her hair washed; she enjoyed the warm water on her head and my scrubbing her scalp. i got through the front of her hair after it was washed, but the back is still complete tangled mess. it was about all she could handle to have me combing her hair on top of dealing with the tummy pain.

enjoying getting her hair washed

we got through those things and she was pretty grouchy and miserable. i got her loaded up in the wagon and we went outside. our friend jean came with (thanks for the visit jean!). we saw the fountain and looked for bunnies. melanie really wanted to see a bunny, but we never found one.

a trip outside, and she manages a smile

searching for bunnies in the bushes

then we walked around the hospital a little and went to the library to get different dvds.

getting out and doing different things has helped her manage the pain this morning, but it's tired her out. she is resting in bed watching a dvd from the library now. i still need to reaccess her port sometime today.

they are convinced the bacteria translocated from her gut. i asked whether they thought it was from her colon or small intestine. no way to know for sure of course. it is possible it translocated from her colon where that contrast has been sitting in there for six months; it's also possible it translocated from the small intestine. they are all on the same page now with agreement that the contrast is still in her colon from way back in nov/dec. we won't be taking care of it this hospital stay but later after she's fully recovered.

looks like the sun is coming out now. it was a little cool this morning. maybe we will go out again later. they are supposed to be having some video kiosk thing up here this afternoon, so we will probably take a look at that too. melanie is feeling a little better since the zofran, tylenol, and neurontin.