Making Lemonade out of Lemons!

Well, once again, it's been awhile and there is too much to cover everything so I will do my best to summarize.  I know it's time for an update when people start asking so thank you for the reminders!

Since being home, we've had our ups and downs.  Mostly ups so that is good!  PHS (Pediatric Home Services) IV nurse Lynn and the home care nurses are back in our home and providing wonderful care for Austin.  Over the next few weeks we are hoping to get into a more regular schedule but for right now, they are all doing a great job of filling in and getting routines and orders going again!

As for Austin's progress, there is NO DOUBT that we made the right decision to restart his TPN/lipids.  Austin is so happy, he has gained so much strength and has made so much progress with his physical therapy and occupational therapy.  He is now sitting up on his own to play with his toys, rolling over consecutive rolls and is more willing to put his feet on the floor.  As for feeding therapy, he is taking small steps.  Just this past week, he has been willing to drink water from a sippy cup and take some tastes of bananas!  He's very hesitant and skittish towards different tastes.  We are trying very hard to be patient yet encourage him.  He doesn't seem to have oral aversions, but just doesn't trust us.

Austin saw Dr. Kevan on Tuesday afternoon.  We had a good conversation.  His hemoglobin is still low, but we just restarted his iron supplements.  Plan is to monitor it the next couple weeks.  We're not sure if the Imodium we started when he was inpatient is doing much, but we're going to stick with it for now.  She gave us a list of foods to try...avocados, bananas, peas, sweet potatoes, and white potatoes.  As for weight, Austin now weighs about 8kg (17.5 lbs).  On average he's gaining about 70g/day.  She would like to see him closer to 100g/day.  I think that next week she will adjust his TPN and increase the calories.  As for how long he will need the TPN/lipids, we still aren't sure.  At the minimum it will be a few months.  Everyone is very hesitant to put a timeline on Austin, he will let us know when he's ready.  His PICC line is only good for a few months at a time, so we will reassess that in a month or two.  Austin's enteral (tube feeding) rate is at 42mL/hr over 24 hours/day. The goal is to go up 1mL/hr once or twice a week. We base this on his stool outputs.

Today Austin saw Dr. Gremmels (cardiology) and received a very good report.  Austin was born with 3 small holes in his heart (PDA, VSD and ASD).  His echo today showed the VSD has completely closed, the PDA is stable at about 1mm and the ASD has decreased from about 3-4mm to 1-2mm.  If the PDA has not completely closed by age 3 or 4 AND Dr. Gremmels can hear it with the stethoscope, then he may suggest we use the cath lab to close it.  The ASD is not concerning and most likely will continue to close on it's own.  Austin doesn't need to see Dr. Gremmels again for another year!

Max is doing amazing!  Such a resilient little boy.  He's also very caring and loves to help!  He's mastered his stryder bike, love PJ Masks, and his vocabulary is demonstrating exponential growth!  He finally reached a safe weight that we could turn his car seat to forward facing!  Now he thinks he can drive!  Ha!

Brian and I are good.  We have to take one day at a time!  We were blessed to be able to visit Ann Arbor for the Iowa @ Michigan football game the first week in October!  This has been planned for almost a year and there were many times that had us doubting we would be able to go.  Thanks to Lynn and Wanda Jones for moving in with the boys for the weekend and PHS for providing the support necessary for us to be able to go.  We are incredibly thankful and appreciative!

With Max's birthday and Halloween just around the corner, I'm hoping my next post is filled with fun only!

Hope all is well!
Hugs to all,
Tara and Brian
Max and Austin