Hello everyone! I'm so excited to tell you how much I love being outside! It's finally spring here in Minnesota and I'm lucky that Mom, Dad and Max really like to go on walks and play outside! I just love the fresh air!
Overall, I'm doing really well! Mom said some of you have been asking, thank you so much for thinking of me! I don't really understand what is going on, but things have been a little different this past month. Mom, Dad and Max are home EVERYDAY! It's okay, but my nurses still come and as awesome as they are, I would rather be with my family! So, it's sort of hard when Mom and Dad have to go downstairs to work and Max is running around begging to "watch another show"! Speaking of Max, he's doing well! He loves being home and I'm not sure how Mom and Dad are going to get him to go back to daycare when it's time! I guess we will have to see how that goes, but I'm predicting not well! I actually enjoy having Max around too, before I hardly ever saw him because he went to daycare and I stayed home with my nurse. Now we actually play together a little bit and he even gives me hugs and kisses!
Medically, I have some exciting news! I was gaining too much weight so they took me off my lipids! I still have my TPN that I get from 7:30pm to 7:30am every night, but it's nice only having one IV line and only one access on my port! When I had to have 2, the port access was longer and harder to tuck under my clothes. My weight gain has slowed down, but my dietician told Mom I'm still doing okay! My teeth decided to start coming in again. It really makes me cranky sometimes and my mouth has been pretty sore. My tummy has been a little more upset lately and Mom blames everything on teething. Hopefully they pop through soon and quit giving me a hard time. My feeding tube rate is at 51mL/hr so I'm still increasing, just a little less often than I was before the teeth!
My hemoglobin continue to be an issue! Dr. Kevan said it was time to consult with hemotology, so last Thursday we had a telehealth appointment with Dr. Goubeaux at Children's. All my therapies are now using telehealth so I'm getting pretty used to this video thing! Basically Dr. Goubeaux and Mom had a nice conversation while my nurse and I sat there playing! Dr. Goubeaux said that my short gut treatments take priority and so with my low absorption, I just can't keep my iron up enough to keep my hemoglobin in the normal range. I get a blood transfusion or iron through my IV and my hemoglobin goes right where it's suppose to be and then over time, I just can't maintain it and it starts going down again. Dr. Goubeaux wants to do some extra labs this Monday and then an IV infusion of iron on Thursday. My hemoglobin a couple weeks ago was 7.7 and he would like it to be between 10-11. Good news is that I've had iron infusions before and I have tolerated them just fine! I do have to go to the office for this first one because they just want to make sure I don't have any side effects and they are also going to do a study to see if I'm absorbing any of the iron they put in my g tube everyday. If I'm not absorbing it, then there's no reason to take it! If all goes well, Dr. Goubeaux thinks I will only need the iron infusions every 2 months.
Last thing...sorry, this got sort of long! We just found out this week the Walk for Amazing is still going to happen, but virtually! I'm excited as it's a little risky for me to be around that many people anyway! So, we are still raising money that will go directly to the PICU (we chose them this year because that is where I spent most of the month of January)! They always treat me so good there and do a great job of safely getting me back healthy and home! So, here is the link...please don't break the bank, but any little bit helps!
Stay healthy and I will encourage Mom to update you after my iron infusion this week! Pray for an uneventful day!
Love and Hugs,
Austin (Mom, Dad and Max too!)
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