Not a lot to report medically. They increased his feeds to 4mL/hr on Wednesday and he's tolerated it okay. He's been slowly creeping up on his ostomy output again. Dr. Kevan wanted to wait another day before we decide whether or not to go up to 5mL/hr. Right now he's being fed using his NG tube (the one in his nose), however, in preparation for home, he will need a G-tube that goes directly into his stomach. It's much safer than the NG. We are hoping that will happen late next week.
Speaking of home, we are still about 1 1/2 to 2 weeks away, but we have started making plans! A few people have inquired, so I will try to summarize what home is going to look like for us in the immediate future and next few years as we help Austin maintain adequate growth. When he is discharged from the hospital, Brian and myself will be trained on all his cares. He will have the feeding tube (as mentioned above), and his IV access (Broviac). His IV access will be mainly used for 2 things: 1) TPN/lipid nutrition and 2) blood draws for labs. He will also have his ostomy bag and dressing changes. We will need help. Initially, we will have PHS (Pediatric Home Services) for equipment, supplies and skilled nursing (i.e. lab draws). We are also working on getting extended home nursing for additional cares. This will be a nurse who comes into our home and helps us with all of Austin's medical needs and therapies.
As for the timeline, Austin will decide when everything actually happens. We've been told to plan for the ostomy for around 6 months and the feedings/TPN/lipids for a couple years. Austin's bowel will need time to adjust to the short length it has to absorb the amount of nutrients he needs to survive without the nutritional support. As I mentioned in an earlier post, he has 1/3 of his bowel. The hope is that 1/3 will grow slightly in length, width and become wavy. The more surface area, the better absorption.
We are very excited to get back home, but as you can see, that will be a huge transition. The staff here are amazing and will help guide us along every step in this journey! Most important thing is Austin is ready medically and we are prepared to meet all his needs. We accomplish this one day at a time!
Once again, your thoughts, prayers, texts and oh so generous gestures are so powerful and allow us to remain hopeful in our focus on Austin's health.
Have a great weekend! I will post if anything changes...no news is good news!
Love and Hugs,
Tara and Brian
Max and Austin
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