Keeping up with Four Joneses!

Austin has a little news to share... Now, I'll do my best to interpret for you!  "I'm getting out of here!  I've done so awesome and the doctor's and nurses have done such a good job with my surgery and helping me recover, that I get to go home tomorrow!  We're all very excited to be back home!  Thank you for all your thoughts and prayers!  You sure are a powerful bunch!  Hugs and loves!" Yes, it's true!  Everyone agreed that it was time to go home.  Throughout the day he was able to go from 13ml/hr to 18ml/hr on his tube feedings.  His stools are starting to become a little less liquid and we have a good plan in place to keep his bottom from getting raw.  Dr. Kevan talked with us for about 20 minutes and she is as excited as we are!  Once home, we are going to just sit tight for about a week and give him some more time to heal from surgery.  Then we will begin going up 1-2ml/hr each week depending on how he's tolerating it.  We can also start

The morning after St. Patrick's Day update!  Short and sweet! Austin had a great night!  It did start a little rough.  He was at 8ml/hr and about 9:30pm, I was going to change his diaper and he threw up a couple times.  Poor kiddo was exhausted.  We turned off his feeding pump for about 40 minutes, changed his diaper and within about 15-20 minutes he was back to himself telling us stories!  Jodi (his night nurse) decided to start him back at 8ml/hr and keep a close eye on him.  By lab draws this morning he was at 11ml/hr and he's currently at 13ml/hr! The hospitalist and her team of residents was in this morning.  Labs look good, but hemoglobin is still low (8.3 - normal is 10.5-13.5).  He will have his 2nd of 3 replacements of iron today.  They were very pleased at how he's doing!  Still working on figuring out what his new TPN recipe will be.  The residents supported restarting his bottle feeds, but were going to wait for Dr. Kevan (GI) before putting in the order!  H

Well, Dad was officially disappointed when Austin decided to take his nap during The Selection Show!  Oh well, there's always the actual games starting on Thursday!  March Madness is a big deal at the Joneses! Austin had another great day!  He's happy, he's alert, playing and making progress!  Dr. Kreykes was in this morning and spoke with Brian.  He's very pleased at how things are going and has been in contact with GI (we've figured out there is sometimes behind the scenes stuff going on around here. ha ha!).  He ordered for his enteral feeds to be increased by 1ml/2 hours! Wowza, that's aggressive!  Austin tolerated the increase to 4ml/hr and then we gave him an extra hour and a half at 5ml/hr.  He had a couple episodes of gagging and a little discomfort!  He went up to 6ml/hr at 4:30pm and just went up to 7ml/hr at 6:30pm.  He woke up from a good nap about 6:30pm and is playing with his little jungle gym and telling stories!  Pretty happy boy right now.

Austin had a fabulous night last night!  He slept from about 9pm-4am, we had a little party from 4a-5a and then he slept again until about 7:15a!  He's on scheduled Tylenol and it's working beautifully. The surgical team was in this morning and again, was very pleased with Austin's recovery so far.  Since he's had several stools now and good bowel sounds, they decided to start trophic feeds.  Yep, starting back at 3ml/hr.  Yikes!  So around 2:30pm today, his g-tube is now being used for feedings rather than draining.  His g-tube was being used to allow stomach fluid to drain out, but now we have food heading in!  We will observe how he tolerates the feeds over the next day or two and hopefully start progressively increasing the rate.  Initially, his stools will remain fairly liquid in consistency and as his colon adapts to being used again, it will become thicker.  We have to maintain a thick "frosting like" layer of cream to keep his bottom from getting

POOP! Austin has had a good first 24 hours post op.  He got a couple doses of morphine yesterday, otherwise, tylenol has kept him fairly comfortable.  He slept most of the night, up every couple hours, restless and wiggly.  His incisions all look good.  He has a midline incision that is about 2-3 inches long, he has the site where the ostomy was and then the new G-tube (MIC-key). The surgery team was in this morning (a partner of Dr. Kreykes) and no changes today.  We are just staying quiet and waiting for things to "wake up" and start moving. He's also being seen by the hospitalist Dr. Pratt (and a group of residents).  Biggest decision of the day was what to do with the 6 hours his TPN/lipids are cycled.  Since he's not getting any breastmilk during that window of time, they were concerned with dehydration.  So, they decided to continue to cycle his TPN/lipids and then just run some normal IV fluid during the off hours until he's able to restart his entera

Just a quick update while we wait to be able to see Austin.  He's in recovery and surgery went great!  His intestines are all hooked back up and the G-tube was switched out to a MIC-key.  Dr. Kreykes was very pleased with how things look.  Austin now has 43 cm of bowel (small intestine) and 2/3 of his colon (large intestines)!  Yes, his bowel has grown from 29cm last fall to 43cm today! Goal for today is to keep him comfortable.  It will take a couple days for him to begin pooping again.  Once this happens, we will restart his tube feedings.  Dr. Kreykes said this morning that since he came in at 18ml/hr, the goal will be for him to go home at 18ml/hr!  Speaking of home, looking like early next week! That's all we have for now!  I will continue to update you.  THANK YOU so much for all your thoughts and prayers!  Austin is one loved little boy! Love, Brian and Tara Max and Austin

Good afternoon!  Just a quick update.  Austin had 2 appointments this week.  The first was on Wednesday for his 6 month eye doctor appointment.  You may be thinking it's a little soon to be going to the eye doctor.  Well, Rebecca Olson is our genetics nurse practitioner who specializes in children with Down Syndrome.  She has a special schedule of additional "check ins" that typical children would not need.  More frequent vision screenings is one of them.  Dr. Engel shared that Austin has near sightedness and astigmatism.  So crazy how they can tell these things in a 6 month old.  He also has some tiny tear ducts which lead to goopy (like that medical term) eyes from time to time, especially if he has been crying or is congested and some nystagmus which is rapid movement of the eyes typically from left and right.  Both of these things are very typical and there's a chance some of this will resolve on it's own.  Austin will see Dr. Engel again in 6 months to che

Wow...2 months have passed since I last posted!  Just evidence of how hectic things are at our house! We will start with Max.  He continues to amaze us!  He's a creative, active and the most loving little boy!  It's not all peaches and cream...he is 2 1/2 and he reminds of it periodically!  Unfortunately, Max had a cold that turned into sinus infection.  A trip to the After Hours Clinic, some amoxicillin and he rebounded in a couple days.  Even Max says "no more snow Mommy"!  For those of you who don't live in the Midwest, the month of February set records for the most snowfall.  Let's just say, it's going to take awhile until we see the grass again! As for Austin, he is a growing and happy little boy!  He was 6 months on February 21st and weighed in at 6.49kg (about 14 lbs 5 oz) and 25.5 inches long.  He continues to meet his growth goals typically of a baby with Downs Syndrome.  Austin has providers from Capernaum Pediatric Therapy and Eastern