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.

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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.

wednesday night

i'm up doing cares and giving meds so between meds i thought i'd make this blogspot. i'm loving all the pictures on our friend eithene's new site, so i thought i'd keep myself awake copying their idea. :) updates here will read the same as her caringbridge site, they will just have more pictures. :)

melanie started feeling rough again after the meds worse off. she laid down around 5 and tried to sleep but could not. the neuropathy was worse than usual tonight for some reason. she didn't want anything, blankets or clothes or anything, touching her skin. finally, around 8, she was able to tolerate the blankets over her and she got snuggled up. she fell asleep around 9. she seems to be sleeping pretty well but is retaining some fluid and coughing a bit.

we went for a couple wagon rides today. we went downstairs to the fountain where she put he hands in the water. played in the playroom for a while. she spent some time on my "bed" (the couch in the room) for a change of scenery. we played with some animals from the playroom and all the fun gifts people have brought here. we got a couple visitors tonight which melanie enjoys. thanks for the visit, food, and adult conversation, capes! :) thanks for stopping up phyllis and for the fun card game and coloring book.

playing in the playroom

melanie's energy level is increasing. she is able to sit up alone for a while and even stood up shakily for a while today.

the pressure in her intestines goes up and down; sometimes meds are really hard to get in, other times not as bad. her meds are causing increasing pain though, so i'm having to give them in even smaller increments and spread them further apart--so it's taking most of the day to get all her meds in.




i guess the doctors hadn't read the ct report, so i brought to their attention the mention of mild enlargement of her liver and spleen. said they would mention it to gi. it isn't severe and probably not something we can do anything about, but it is a change. they said bacteremia doesn't typically cause an acute enlargement of liver and spleen, so it may be a chronic thing that has been happening over time. not sure.




melanie's ct scan



mommy and melanie at the ct scan

i am hoping maybe tomrrow morning before it gets too hot i'll be able to take melanie out to the courtyard. we haven't been outside since saturday, so i'm sure a little fresh air would feel good. melanie was getting a little antsy today; wasn't able to find a good distraction to get her mind off the pain. a trip outside might help. this afternoon they had a therapy dog visit which ended up being great timing. melanie was dealing with pain but at a level that the dog visit was exactly what she needed to help get her mind off it.

melanie with therapy dog "gretta"