Home Sweet Home

Austin came home today!!! After much debate (between Mom and everybody at the E Pod of PICU) it was decided that Austin was doing well enough to finish his recovery at home. Although we feel that this is fast, there is nothing better than being at home for food, play and sleep. Austin will miss the fabulous trains that circled past his room at Phoenix Children’s Hospital, but it is great to be home. Today he is finally walking and has begun eating at his normal pace (Dad is an excellent cook for those of you that did not know it!) Although we will continue to monitor his coumadine at a special clinic offered at his cardiologist’s office, he will now be rid of the docs, nurses, x-rays, blood draws and constant prodding of the hospital.
We are so thankful for the skillful hands of his surgeon Dr. Pearl and the loving care and monitoring of the rest of the hospital doctors and nurses that have gotten him this far. During this stay at the hospital we saw many of the same hospital staff as previous surgeries and they all remember Austin (and his neurotic mom) and were so impressed with how big and wonderful he looked. Wait until you all see him, he is actually pink!

Some Things Never Change

We are day 6 post-op and are now seeing our little boy’s personality shine through again. He is asking for the choo choo, reading his favorite books and eating his favorite foods including spaghetti (maybe not the best option because it got EVERYWHERE including inside his oxygen cannula). Every recovery is full of ups and downs (Saturday was downs and Sunday ups) and all we can hope for is steady progress forward. Every day he has less medications, tubes, lines, pokes and treatments. Today he will have one more of his lines pulled so we will just have only one IV left and most of his meds are now oral so we might get rid of the last IV site tomorrow. We will also discuss options with Dr. Pearl and make a plan for Austin’s chest tubes and oxygen and hopefully they will not be needed much longer. Once those are done it should just be a hop-skip-and jump to discharge and home.

We thank you all so much for the cards, calls, thoughts and prayers and feel so thankful to know Austin is surrounded by so much love.

Austin Is Doing Great! Post Fontan Surgery

Austin had a very long day, but we are happy to report that the surgery went fantastic!

The first round of nurses just finished for the day and said Austin was the easiest post-op patient they have had in some time. Aside from the occasional whine, and  saying “drink,” “drink,” “drink,” (the poor guy hasn’t been allowed to drink liquids in about 24 hours) , he’s much happier than we could have imagined.

I just took a glance at the monitor and Austin’s blood oxygen level is registering 94% . The goal of  the Fontan surgery is to increase the oxygenated blood in the body. Previously, Austin was running in the mid 70′s while the average person will register 98%  - 100% .  In time, Austin should be in the high 90′s.

Between “naps,” Austin was actually able to keep his eyes open long enough to take in a few minutes of his favorite Shrek YouTube video. He just loves that big green oger.

Out To Prove Them Wrong

During our first meeting with Austin’s surgeon we were warned that he could be facing other complications due to his condition.  They said he would probably be a fussy baby and that he could have learning and mobility delays due to his poor oxygen levels. Now, 10 months later, Austin has proved them all wrong on all counts.  Not only is he not fussy, but is one of the happiest babies we know and everybody remarks on how alert he is and his constant smile. He is catching up on the growth chart and he is the pinkest “blue baby” you have ever seen!  He is now crawling all over the house and pulls himself up on anything and anyone he can find.  His doctors are now absolutely amazed at his progress and say that he is a complete anomaly.

Austin has finally been cleared to travel after his first birthday and so we are looking forward to long visits to both Washington and Wisconsin to introduce him to the rest of his family and friends. We thank you all for your continued support and prayers and hope to see you all this summer.

 

A visit from Grandpa and Grandma

Who needs toys when you have a cardboard box?

Valentines Day with Nana and Papa

10 month old portraits

Some New Pictures Of Austin

Austin has had a great month, and is looking forward to a Chrismas tree, presents, and his holiday feast of green peas and yams! On Sunday, Austin watched with a big grin on his face as his Dad struggled to get the Christmas lights up on the house. The lights are done, and Austin loves to check out Santa on the roof in the train delivering the presents to all the boys and girls (really he just likes the array of blinking lights). Here are a few new pictures of Austin hanging out and enjoying himself.

What a difference a week makes!

Austin was discharged from Childrens on November 4th, and has been all smiles since being released from the hospital. He made a pit stop at Nana and Papa’s house for the past couple of days due to Dad coming down with a nice case of the flu on the day Austin was supposed to come home. After scrubbing down the house, Austin will be on his way home later today!

Here are a few photos showing Austin’s progress over the past week.

Last Wednesday – 10/29/08

Starting to feel better – 10/31/08

This Wednesday – 11/05/08

Austin’s Out Of Surgery. Doing Great..

Today was a big day for the little man. We were out the door by 6:45 am and the nurses whisked Austin away to the operating room by 8:00 am for his scheduled Glenn procedure with Dr. Pearl and his homies.

At about 1:45 pm we were able to talk to the good doctor and he was very happy with the outcome of the surgery. He said he’s pretty sure, well at least relatively sure…. Ok, if he was a betting man, he would wager that all the plumbing got hooked up correctly and the fittings are holding as planned.

Currently, Austin is relaxing in the Intensive Care Unit while his highly skilled team is constantly tweaking medications, administering blood transfusions, running tests, entering data into the computer, and answering the endless questions coming from Austin’s parents (mostly his mom).  Some examples of questions from Austin’s mom include: ”What are you doing?” “Now what are you doing?”  ”What are you doing now?” Then the cycle seems to start over with “What are you doing?”

Meanwhile, I sit with pops in the corner of the room while he explains the anatomy of the heart. Ocassionally he will pause and look up to see if I’m still tracking. Upon seeing my “deer caught in the headlights expression,” he starts all over.

The next few days should be touch and go with getting Austin’s refurbished ticker all dialed in, but with any luck he could be back home in about 5-10 days. We will keep you in the loop with updates thoroughout the week, but we couldn’t be happier with Austin’s condition at this time.

I’ve included a few pictures a day or two prior to Austin going in for surgery. He wasn’t feeling too photogenic tonight, but wanted to make sure that I showed off his Halloween costume on the blog.

Austin Scheduled For Surgery

Austin’s parents and Doctors are both thrilled with his progress. He is now tube free and a tad over 12 lbs. Austin is all signed up for October 29th where he will be undergoing the Glenn procedure down at Children’s Hospital in Phoenix. The Glenn procedure connects the superior vena cava to the pulmonary artery, after the Blalock-Taussig shunt is separated. This allows more blood flow through the pulmonary arteries to the lungs. It also serves as a basis for the final surgery, the Fontan procedure.

For now, Austin still loves taking walks to the park where he enjoys watching baseball games and football practices. Occasionally he even jumps on a swing with Dad for a few minutes. Although optomistic at the start of the season, Austin has become bored watching the Seahawks on Sunday and prefers throwing in his Wiggles DVD for entertainment. For Austin, nothing beats the Wiggles performance of “The Big Red Car.”

 

Austin’s favorite video. “The Big Red Car.”

Austin Goes To The Park and Loses the 02

Much to the delight of his parents, Austin was able to finally ween (I’m sure I spelled that wrong) himself off of oxygen this week. We have been working at it for the past couple of weeks, and today was the big day. We monitored Austins profusion levels, and even at his fussiest times his numbers remained strong.

Since Austin and I had no plans this evening we decided to take a stroll down to the park to take in the scene. Austin got all dudded up in a new outfit, fresh baby lotion, and even changed his Huggies before heading down, but unfortunately there were no dames Austins age to be found in the park. Oh well, Austin still had time to do a mini photo shoot since we were on location.

Timmmberrrrrr (a product of the worst storm in Phoenix in the past 14 years)

Paul Bunyon was here

Throw another shrimp on the barbie

Lord of The Rings

Garbage cans are cool...And useful.....

A few new pics of Austin

“Big A,” has continued to make great progress over the past few weeks gaining about an ounce to an ounce and a half a day. Currently, Austin’s weighing in at a stout 9 lbs. Dr Jadeykin is very pleased and anticipates Austin being ready for his 2nd surgery at the end of October, or early November (at least according to his magic 8 ball that he has on his desk).

For now, Austin enjoys long walks around the neighborhood in his stroller, preseason football, and the occasional session in his swing. 

Here’s a few recent pics of Austin.

Big smiles when Austin finds out the Seahawks are on Monday Night Football

Notice the Seahawk gettup. Being a Packer fan is not an option.