Wednesday, January 30, 2008

Home....but not for long

Because Austin did not have a high temp for the previous 48 hours and his CRP and sed rate had come down some, we got to come home yesterday.

The doctor sent me home with a chart to keep track of his temperature. At 5:00 it was 99 degrees. He acted fine. I put him in bed about 8:30 because he was yawning and yawning. I went back in a couple hours later to check on him, and his temp was up to 102.2! I couldn't believe it! He had a normal temp for the last two days, and then we come home and he spikes a temp.

I talked to the doctor today, and he thinks he needs to see a rheumatologist. Unfortunately, the pediatric rheumaatologist for the hospital is backed up until mid March. He is also out of town until Monday. The doctor wants to admit Austin back into the hospital on Monday so he can be seen by the rheumatologist quickly, as an inpatient.

I have not told this to Austin. He is so happy to be home. I just keep taking his temp and smiling. Last reading was 101.5.

Tuesday, January 29, 2008

I've Been Tagged

I've been tagged by Marilyn at Marilyn is a super person, a good Christian, and a wonderful mother of five. She lives on a farm in Texas. She blogs about her family, about devotions, special needs and well, just a mixed bouquet of things! Now it is my turn to tag.

Here are the rules:
1. You must post the rules before you give your answers.
2. List one fact about yourself beginning with each letter of your middle name. (If you don't have a middle name, use your maiden name).
3. At the end of your blog post, you need to tag one person for each letter of your middle name. (Be sure to leave them a comment telling them they've been tagged and that they need to read your blog for details).

M - Mom to two great kids.
A - Always trying to do better.
R - Really enjoy homeschooling Austin.
I - I have 3 dogs.
E - Every day I spend with my family is a blessing.

I'm tagging:
Laura at - a homeschooling friend from blogger land, who has a great kid and one on the way.

Missy at - a Weaver mom who has four kids and the neatest blog and lapbooks I've ever seen.

Darcy at - a homeschooling mom to three boys, who I don't know well, but she always has something fun to read about. - another Weaver mom who has two of the cutest kids I've ever seen.

Nevin at - a very special new friend of Austin's.

Home today Maybe?

Well, Austin's fever has been down for the last couple days and no more vomiting. His CRP and sed rate were still high yesterday, but not as bad as before. They are going to do more labs to see if those have come down more. If they have, we get to go home. Not that we know what the heck was wrong with him or is wrong with him???? Hopefully whatever it was/is, it does not return!

As I look out at this beautiful view on the sixth floor of Children's Hospital, I see fiercly blowing snow and cars crawling down the street. I walk into the bathroom of our corner suite, and it sounds like I'm in an airplane. Sigh. This will definitely be the day we get to go home.

Saturday, January 26, 2008

Waiting and Confused

We finally made it up to a real room on the fifth floor last night! Yoo hoo! I took a nice long shower this morning while Austin slept. It was so nice and quiet and dark last night...we both slept good.

Infectious Disease came in last night and said his other culture has not grown any staph yet, and he doesn't think Austin has a staph infection. His IV was going bad, and the doctor said to just discontinue the antibiotics because he doesn't feel this is staph. He said there are a couple of different viruses that could effect his blood levels like this. They want to just wait and observe and take more blood. Austin had a pretty good day yesterday. His temp was average around 101.

This morning the Orthopedic doctor came in and said he is having a "discussion" with Infectious Disease because he DOES believe this is a spine infection problem. The blood test that tells them if he has inflammation is worse now than when he came in. He thinks he SHOULD be on antibiotics. But, he says, we need to let them rule out their different things. They both decided they would like another test that actually looks for infection IN the bones. They called down to schedule this; however, it cannot be done yet, so close to the other test that was done with the dye. we are...waiting and confused.

Austin had a good day. He started out at 98.4 temp this morning. He had a shower and got up into his chair and played some games. Temp then went to 99, then 100, then 100.5. This is still not bad. Hopefully it won't keep climbing. Unfortunately it is evening now, and that is when it usually starts climbing.

I picked Amber and her friend up after school yesterday and brought them over to see Austin. Then Kevin and I took them out to "Buffalo Wild Wings." Not really my thing, but Kevin and Amber love that stuff.

Amber, who is very thin, was complaining about the fat on her hips. She said she needed to go in for circumcision. What?!??! I said. Turns out she meant liposuction. Um, thats my Amber.

Karen, our supervising teacher, came up here for a visit the other night. That was such a nice surprise. His assistive tech gal, Diane, also was up here and sent up a little beanie bear. That was so thoughtful! Grandpa came up today and took me to lunch. Grandpa is so good. He knows this place almost as well as we do.

Well, gonna sign off now. Austin wants me to watch "Fat Albert" with him.

Thursday, January 24, 2008

Second Home Update

Lets see....yesterday evening Austin's temp went up to 104.5. The nurse and I were putting cool wash clothes all over his body. It was crazy. The lab came up and took some more blood while he was having the high fever. His urine tested fine.

This morning he went down for his bone scan. The reason they do the bone scan is because it is the only test they can do to really see anything in his back with all the hardware in it. The radioactive dye circulates through the body, and if the dye accumulates in a certain area, this is most likely where the problem is. Well, I guess the scan showed some accumulation in his lower back, but no more than the last scan did in October. They are just not sure if this is a positive result.

There was a little accumulation on the right they wondered appendicitis? They took him down for a CAT scan of his abdomen. But no, no appendicitis.

The blood cultures did grow out some bacteria, but it took over 48 hours. I guess this could be a false result if it takes longer than 12 hours? But someone told me it takes 72 hours for a result... so, hmmnnn, I dunno ... sometimes these people just don't make sense to me! So lab came again tonight for yes, you got it, more blood.

HOWEVER, they did decide all in all, my poor suffering son does deserve some antibiotics. YEAHHHHHHHHH! So, hopefully he can start feeling better.

We are STILL in ICU in a room with no bathroom/shower. I hate it. I've begged for a room upstairs, but it isn't working. Someone told me there is a lot of kids with RSV.

And, well, that Body for Life I was working on is on hold. There is nowhere to exercise here and the only thing to do is eat.

Kevin is slow at work, so I think he might come hang out for awhile in the morning so I can go home and get a good shower.

Wednesday, January 23, 2008

Visiting our Second Home (Hospital) Again!

Okay, so he was getting sick. At least he got a nice shopping/arcade trip in before he ended up in here again.

Sunday Austin woke up with a 101 degree temp. He stayed on the couch most of the day watching movies. Monday he slept until 11:00. Still running a fever. But he insisted on doing some school work (sometimes I think he is the teacher and I am the student). I didn't want to work, but he made me.

Around 3:00 his temperature went way up...103. I decided to take him to Children's ER. The ER was extremely busy. We finally saw the doctor at 7:00. I let them know he had no other symptoms but did have the history of staph infections. They took blood work. At 9:00 they let me know his blood work did not look good. But rather than start antibiotics, assuming it is the staph infection back, they have to follow their routine of ruling everything else out and waiting for culture results to come back in 72 HOURS! All the beds were full, so we were sent home and told to return the next morning.

Yesterday morning we got here and they STILL had no beds available so we were put in ICU. Nuclear medicine came in and gave Austin a radioactive injection. Tomorrow and Friday he will be put under anesthesia and taken down for bone scans to see where the radioactive dye is accumulating. He did pretty good yesterday. He stayed in his wheelchair and played some games on the computer. But, around 5 p.m., he started getting really warm again and got into bed. In the middle of the night he was up to 103 degrees and vomiting. It is late morning now, and he is still vomiting.

I still don't think they want to start antibiotics yet. Not until they see bone scan results or culture results. They are going to try Pedialyte now. If that doesn't stay down, than it will be IV fluids for my little man.

We are still in ICU today. I am praying for a room upstairs...with a shower...with a bathroom...with more privacy...with less beeps....with movies and with familiar faces.

On the brighter side of things, Austin has a new pen pal named Nevin. He is so excited about it. I set him up with his own email. His new pen pal likes video games and Austin thinks he is just the coolest friend ever!

Saturday, January 19, 2008


Today the kids and I went shopping for new shoes for Amber. She has P.E. this semester and realized she must have left her tennis shoes at camp. In July. Wow. Obviously she never wears her tennis shoes. She usually wears the slip-on Vans shoes or clogs. As a matter of fact, when she was trying her new shoes on, it took awhile. I thought there for a minute she forgot how to tie her shoes!

While we were at the mall, we went downstairs and played in the arcade with Austin. Something to do. Doesn't seem like we've been getting out very much since it has been SO cold. I think it was a high of around 9 degrees today!

Austin didn't seem quite himself yesterday. A little red in the face, eyes bloodshot. Emotional. I thought for sure he was getting sick, but today he was fine. Thank goodness.

I'm still chugging along with Body for Life. Day 12 and I've lost four pounds. Not a lot, but I'll take it. Not bad at all for all I get to eat. I can honestly say I'm not hungry. I did dream about cinnamon rolls the other night though! Kinda funny. So today, which was my free day, I had a cinnamon roll from CinnaBon.

Kevin got me a new camera for Christmas. I took a couple pictures and put it aside. The next time I went to use it, the batteries were dead. I tried putting in several different types of new batteries, but it wouldn't turn back on. Kevin took it back to the store and I got a new one. I decided to try out the movie feature on Sammy's funny little hop, hop, hop when he goes to fetch a toy. It is posted up above. That is really nifty. I'll have to make a little movie of Austin using his eye gaze.


Thursday, January 10, 2008

Happy New Year

So....what are your New Year's resolutions??? I've decided to start the "Body for Life" program. I started Monday. I am alternating the treadmill with upper body weight lifting and lower body exercises. I am eating six small meals a day. I have not been hungry, but I am so sore I can hardly move! Austin is laughing at me today because every time I get out of the chair or go to sit on the chair I'm "owe, owe owe!" Going down steps is MURDER.

Austin got his stitches out last week from where his cyst was. There was a small area that was still not healed, so we've been irrigating it and packing it with gauze a couple of times a day. I think it is starting to look better now.

Amber started doing some research on the internet and found some very sad pictures and information on animal testing. She just made up some fliers and went out delivering them. Some of the big companies involved in animal cruelty that she found are: IAMs, KFC, Mars Candy Company, PetsMart, Loreal, and also Columbia University.

We had a good Christmas and made our trip up to the Mall of America. The mall was so, so busy. I guess we weren't the only ones with the idea. The hotel was so, so busy too. It took forever to get an elevator. But we did find some good deals. We had no problem spending our Christmas money!!!

Austin and I got back to homeschooling on Monday. He really enjoys the Time4Learning program we've been working on. He is doing so well with his Reading program and spelling/writing too.

BYE for now!

Sammy...Go...Fetch...Hop, Hop, Hop


Lapbook Unit 2