Monday, June 16, 2008

New Meds and New Jobs

Amber got a job! Yippee! She is now a waitress for Village Inn. She started her training tonight and seemed to enjoy it. Austin was pretty impressed when she came home with her Village Inn "Amber" name tag!

I'm working again too. I'm doing medical transcription at home for the physical therapy group I had last year. So far it seems to be working out fine squeezing it in between summer homeschooling. I really enjoy the work and it will give us a little extra money.

Austin has been chugging along on his IV meds until today. The homehealth nurses come out on Mondays to do labs, and his labs today showed elevated liver enzymes. He was also starting to have some ringing in his ears I think. He acted like his ears were bothering him. So the doctor switched him to a different IV med that needs to be infused every 8 hours. Homehealth had to come out and give the first infusion to make sure he did okay with it. That was at 5:30 this evening. So, yes, I am up waiting to give his 1:30 a.m. dose. But I think I'll gradually cut off a half hour until I get to 6 a.m. - 2 p.m. - 10 p.m. That will be easier to live with! The infusion runs over 30 minutes.

Austin's back has been healing really well, but he has started getting his leg spasms back and even more spasticity and discomfort through his right arm. He has been having trouble sleeping too. So, the doctor prescribed another medicine on top of the oral Baclofen and Valium. Between these meds and some warm packs, I think it is getting better. The neurosurgeon said he could get another baclofen pump possibly after the antibiotics are done, but it wouldn't be easy. The normal route may not be feasible with all the scar tissue in his back and it may have to be put in the neck area. But...I'm not ready to think about that yet!

Friday, May 30, 2008

Biography for Austin

In our application for a canine companion, it asks for an autobiography or a biography if the applicant cannot write his own. Here is what I came up with. Please comment! Should I include anything else? Omit anything?

Austin was born at 8 pounds 1 ounce after a normal pregnancy but difficult labor and delivery. This resulted in meconium aspiration and lack of oxygen during birth. Austin was intubated and transferred to another hospital with a NICU. He was experiencing seizure activity at that time. He came off the respirator at about four days old, and was well enough to come home after eleven days.

Although Austin responded well to sights and sounds, he was still not grasping, sitting, or crawling at 10 months old. He was then diagnosed with choreoathetoid cerebral palsy. He began to receive physical therapy, occupational therapy, and speech services after this time.

Austin participated in a toddler group and then a preschool program before starting kindergarten. He learned to drive his power wheelchair and use a communication device at age five.

Austin went to a small neighborhood elementary school and was always well liked. He had mostly the same peers throughout sixth grade. In junior high, Austin moved into mostly special education classes, and it was quite obvious he had fallen way behind his peers in school work. He also began to have some medical problems in the sixth grade. He was diagnosed with chronic aspiration, and needed to have a feeding tube put in. He also developed severe scoliosis and had to have a complete spinal fusion. Shortly after his spinal fusion, he developed a very severe staph infection that led to spinal meningitis. Even after long-term IV antibiotics, the infection kept coming back. So, just last month all his spinal fusion hardware was taken out, and he is again on long-term IV antibiotics.

Last fall, before starting high school, we made the decision to homeschool part of the day to concentrate on Austin’s reading, math, and computer skills. Austin still has a couple of classes at the high school and gets to spend some time with his friends.

Austin participates in Special Olympics Bowling, Basketball, and Wheelchair racing. He also plays Buddy Baseball in the summer. He enjoys shopping, going to movies, and playing computer and video games. He enjoys spending time with his family and friends.

Austin has always been a happy and cheerful guy despite his medical problems and physical disabilities. He has a great smile and a kind heart and anyone who knows him loves him!

Wednesday, May 28, 2008

You Must Be So Happy to Be Home?

This is what everyone says when you come home from the hospital after a couple of weeks. "You must be so happy to be home?!"

Truth is, at home:

I don't have the lady knocking on our door every morning asking if she can clean our room.

I don't have the nurses that come in and ask if they can clean Austin up, give him his meds, help change him, reposition him, or make him more comfortable.

I don't have the volunteers come by to ask if we need a movie or a book or anything to do.

I don't have the guy in the purple vest come by and ask if I'd like anything from the snack cart.

I don't have anyone that comes by to see Austin from the Omaha baseball team, or the hockey team, or the car racing team.

I don't have the elevator that conveniently takes me down to the coffee shop or the gift shop or the cafeteria (where I do not have to cook).

I don't have the bills, or the laundry, or the errands, or anything else that needs my attention ... only Austin.

BUT, at home:

We are back in the privacy of our own quiet home with Kevin, Amber, and the puppies and able to sleep in our own comfy beds. Even though it is a lot more work, it is definitely worth it!!!

Monday, May 19, 2008

Central Line

Austin gets a little better every day. Today he is smiling and it is so nice to see. They are taking him down to surgery at noon to put in a central line (so he can continue his long-term IV antibiotics at home). They pulled out one drain on Saturday, and the other one came out this morning. They took away his pain pump last night and he is just on oral pain meds now. So...things are moving along! Hopefully we will be able to go home in a day or two!

Friday, May 16, 2008

Room 608

We got back upstairs last night. Oh we like it so much better up here than ICU. It is so much quieter. Austin's pain has been kept under control, but he is very shaky and sweaty and uncomfortable. I think he is having withdrawl from the baclofen pump. Even though they are giving baclofen to him orally, it is just not the same as the pump. He hasn't been able to sleep well, and the vomiting started up again this morning. This is tough. But I know it will get better.

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


Lapbook Unit 2