Sunday, November 30, 2008

Updatapalooza

Bad blogger! Bad!

In my defense, Gary was in the field with the good computer (I had the crappy slow one), then we got sick which led to last week's hospitalization. Am I forgiven?

Last weekend Mia and I were knocked on our backs by some kind of virus. It wasn't even one of those viruses that seem productive, all we had to show for it were fevers and body aches. Gary did a good job playing nurse, keeping me hydrated and Mia entertained. We didn't even realize that she was sick until the end of the day on Saturday. She was quiet but didn't start running a fever until that evening. Once it reached 102.4 we took her to the ER since she is on immunosuppressants. They checked for a urinary tract infection, ear infection, and tried unsuccessfully to draw blood from her port. They took blood from her arm and it didn't grow anything in the cultures by the next day, when we went to the Sunday clinic. The pediatrician who saw her was very thorough and wanted her to come in on Monday to have her regular nurse try to get a blood culture from her port. On Monday the doctor managed to get the clump of earwax out of her ear that was blocking the view of an ear infection. Her nurse got the blood from the port but we figured we already knew what was wrong. The blood work from the previous day showed monocytes which they said indicated she might have had a viral infection with the ear infection. No fun! Doc told me he'd keep me updated on the blood cultures and he wanted to see us again the next day, Tuesday.

By Tuesday morning she seemed to be feeling much better, was chatty with the doctor and acting more like herself. He said that the port culture did grow a bacteria, but it was an odd one to find in a port. Streptoccocus pneumoniae is usually associated with upper respiratory infections in the lungs, not ports so we assumed it was a contaminated culture but nonetheless he would keep us updated. We had our neighbors Brian and Matthew over to play and she was fine until the end of the play date when she started seeming tired. After they left (about 5pm-ish) she was lying on the floor and acting fussy. Shortly after, the doctor called and said that the laboratory was sure that the bacteria was inside the port and that we needed to admit her ASAP to start IV antibiotics. I dropped Mia next door (thank you Tamara!) and went about packing her things. We had quite a time contacting Gary, who thankfully was about to come home anyway but after he cancelled his Alaska cell phone, it has been like finding a needle in a haystack (not anymore!) I left a note, grabbed Mia and we headed to the hospital, all of two minutes down the road.

They started her on some big gun antibiotics, to include Vancomycin which is one they used on her when she had staph sepsis back in April of '07. They alternated it with one I had never heard of, shockingly enough. They took another sample from her port and her arm and we also had to take X-rays of her chest. The X-ray was beyond traumatic. She wouldn't lie down for it and kept kicking and fighting us off. We ended up putting her in this awful contraption that basically holds them still with their arms above their head. Even the nurse who brought us down had never seen it used and said it would horrify him!
The next morning a surgeon talked to me about our options concerning the port and taking it out. We settled on trying to "sterilize" it with a two week run of IV antibiotics since the port makes blood draws MUCH easier. The plan changed when the laboratory contacted the doctors saying that the most recent port culture was growing bugs already, so it was obvious the port needed to come out. She went into surgery that evening and did very well. Her fever dropped within three hours and she just continued to get better. By Thursday we were clawing at the walls!
Helen and John brought the girls to see us and with them came Thanksgiving Dinner! They made some delicious dishes and schlepped it up to us, still warm when it was served! Caden was very proud of her yummy biscuits and Helen's pecan pie was to die for! Every thing was good and it was a nice change from the usual, even though the hospital food wasn't that bad! They brought Mia a present, a board game using ladybugs and aphids. It's so cute and I think we played it from the time they left until we got out of the hospital Saturday morning! Mia was glad to see someone other than nurses and the parents, she started to get down right mouthy by the end of the week.
Now for the pictures:


Right before the surgery
In the recovery unit, sleeping off the anesthesia

Our room service Thanksgiving buffet!
Figuring out the Lady Bug Game

These beds can take a lot of weight!
Caden showed Mia where to move her pawn



Feeling perky today!

The surgical incision, glued together! The surgeon said that it ended up being an"S" shaped scar so he straightened it out in case she wanted a strapless prom dress! Mia was upset at first when I told her that they had to take her port out. She's very possessive of her hardware and they've been with her for as long as she's had a decent memory. I explained that it was sick, and it was getting her sick and the doctor took it out to make her feel better. She got used to the idea and now she tells everyone that the doctor took her port.



When we went home on Saturday morning, Brian and Matthew brought her a Thanksgiving card and hat that they made. Candy apples for mommy and daddy!
Her response to the card was, "Oh for CUTE!"



Gary and I have been the crazy people who love snow, always placing the order! Last night the sky finally delivered! I woke up and it took about twenty minutes before I realised that there was snow on the ground. We put Mia straight into her snow suit and headed outside to play.


Mia wanted a snowball, so the girl made a SNOWBALL!




She really enjoyed playing snow soccer




Our neighbors Treena and Jimmy have a great sledding hill behind their house so we brought the kids around and they had a blast trying out the different sleds.

We tried to get a picture with all three, but Jamie wasn't interested and eventually rolled off.


There was *just* enough snow to pull the wood sled, and it did okay for one run down the hill but once you have the grass and dirt coming through it doesn't work so well!


After the sledding fun, we decided it was time to decorate the tree. We had Brian and Matthew over to help. We meant to do it yesterday but ended up going to town. They were all such good helpers, and Brian was so quick that we didn't even get a picture of him!
Mia inspecting every one's hard work





















Sunday, November 2, 2008

Halloween and On

I haven't been a good little blogger lately. Everyone is under the weather in one way or another!
I think we're all succumbing to the dry fall/winter air, waking up with the awfully sore throat and the dry nasal passages. Mia has a humidifier that we just cranked up again. We were contemplating selling the thing because the filters cost as much as the machine! I'm not joking. I'll never get another Bionaire. We paid around $50-$60 for the machine at Costco in Alaska and when we finally found the replacement filters, they were $40!! I just take them out an bleach them and lay them in the sun occasionally but they gunk up fast.

Mia has started her immunosuppressant. We're using Imuran instead of 6MP, they are the same kind of drug though. For some reason the pharmacy couldn't compound 6MP. They list all of the same uses and side effects, it's just a matter of brand name. We're on day five. She's being odd, but that isn't really anything new lately. She's odd on medication. We actually had to skip preschool on Friday because she threw up in the parking lot. She told me when she got up that she didn't feel good. I had to dress her and put her shoes on; all she wanted to do was lay on the ground propped up against her bed. I should have believed her, because I spent an hour cleaning the sick out of the car when we got home! She snuggled on the couch with Daddy and watched a movie and felt much better. I'm sure it was the Imuran, the nausea and vomiting are one of the side effects listed. We're going to see the hematologist in Denver tomorrow, might get a blood workup. We have orders to do it on Wednesday or Thursday anyhow, she's just looking peaked and it worries me. She's extremely emotional, too. I hear her just tearing up and crying over something like dropping a book.



Halloween was fun! She insisted on being Tinkerbell. So we put the dress that Mimmy bought to good use! She's been wearing it every day for nearly two weeks. She got a kick out of dressing up with her friends and even told people "No peanuts please!" So we ended up with hardly any directly peanut products, though a couple of snickers bars managed to get in there. Thank goodness she isn't anaphylactic to things just being in her space!
We could NOT get the child to say "trick or treat" but she did thank them when they put something in the bag. We ended up using most of it in our own bowl of candy to hand out. It sounds cheap, but really we did it so we wouldn't feel obligated to eat it!
That is when she started saying "trick or treat!" She would haul the bowl out before the kids could even get to the garage and yell, "TRICKERTREET!!" She had been collecting only one kind of candy in her hand, so some poor little kids got a wad of pixie sticks! She stood at the door just waiting! It was quite a show trying to get her out of the costume to take her bath and do night time things. She really wanted to stay in their costume! It went back on first thing the next morning!

The neighborhood friends: My friend Marissa and her little girl were a pair! She's the banana holding the baby monkey! We had a ninja, a Cat in the Hat, a baby dinosaur, a Tinkerbell and a cheerleader that was camera shy!

This house scared the daylights out of her. They had a motion activated witch, and she stood at the corner of the garage, already nervous about the inflated moving decoration! The man passing out the candy was very nice and brought the bowl to her!


And no, we didn't have any nightmares to contend with.