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.
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