First I want to apologize, this post is long overdue! First question almost always is: how's Austin? Second question is: how are you and Brian? Third question is: how is Max doing with all of this?
I can confidently say the boys are doing fantastic! Austin loves being at home and continues to grow and thrive! He's a pretty chill little guy and gives us more smiles than tears. I'll get to his medical update in a minute. Max also loves being home. He has mentioned the hospital on only a couple occasions. He is very good to "Baby Brother" and will go cheek to cheek or give him kisses on his forehead. Max is constantly asking about whoever is not with him at the time. He is a very sweet and caring little boy! We celebrated his 2nd birthday on October 29th and 2 days later we did a little trick or treating in Grammy and Call Papa's neighborhood! He wasn't so sure at first, but he sure made a cute frog!
Now, as for Brian and I. As you can expect, we are exhausted. We are blessed we have the capabilities to care for Austin. We can lightly say we've learned A LOT over the past few weeks. Although Austin's needs (AKA "cares") haven't changed much, they've become more routine for us! There are still things we're trying to figure out, but we put faith in each other those things will evolve overtime for what is best for us and what is best for Austin.
We have been so grateful to have PHS (Pediatric Home Services) as our support and guidance. They have been wonderful so far! On Wednesday our extended care nurses will begin their schedule. This means we will have a nurse in our home 12 hours a day and we've chosen 6:45a-6:45p to start. Although this is another transition, I'm optimistic the help will be very appreciated and we are anxious to get to know each one.
Okay, on to the details! Austin is doing so well! His outputs from his ostomy have been very stable and have remained under the 40-50mL/kg. He weighed in at 4.57kg yesterday at Dr. Keven's (Minnesota Gastroenterology). So, in summary, when he was discharged from the hospital, his enteral (continuous) feedings were at 5mL/hr. He went to 6mL/hr on 10/30 and to 7mL/hr on 11/6. Dr. Keven is very pleased with how Austin is doing. So, we will continue to alternate going up on his continuous (tube) feedings and his oral feedings. We decided to go up to 8mL/hr late last night. If he tolerates the increase, then on Tuesday he will get an extra bottle of 5mL each day! We will keep slowly increasing unless he doesn't respond well and his outputs increase above the 40-50mL/kg. Then we just have to slow down. His labs are great and his liver functions continue to be excellent! The liver is monitored closely due to the lipids he's receiving IV. All great news! Austin will see Dr. Valusek (surgeon) on Monday. I will post an update on his ostomy plans after our conversation with her.
Hope all is well and we continue to be thankful for all the help we've received from you! We feel all the thoughts, prayers, love and support everyday!
Love and Hugs,
Tara and Brian
Max and Austin
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