Hello everyone! We are doing great! I absolutely missed my target of updating you after Austin's iron infusions. My apologies. I will lead with they were uneventful, just how we like it! For the first visit, we met with both Dr. Goubeaux and the nurse practitioner, Amy. They were both wonderful! They were very efficient. We arrived, were screened and immediately went back to his room. It was a little strange because we were in the Hematology/Oncology/Blood disorders Clinic so the rooms are not typical clinic rooms, it's more like a small hospital unit. They wanted to do a study to see if he was absorbing any of his enteral iron (the iron we put through his g-tube), so they drew labs and gave him a large dose (a little over 3 times what he normally gets). About 10 minutes after they gave it to him he began dry heaving and looked as if he was going to throw up. He did not, but was clearly uncomfortable. It was nice the nurse and Amy were both in the room to see. We waited an hour and they repeated his labs and started his iron infusion. Since it was the first time, they gave it over the course of an hour. We had to wait another hour after it was completed. Fortunately, he had no side effects and we were on our way. The results of the enteral iron study were a little surprising, his numbers tripled which indicated he was able to absorb it. However, due to his nausea and intolerance to it, Dr. Goubeaux and Amy called on Wednesday to let us know they made the decision to discontinue his enteral iron all together. With Austin needing the infusions either way, it wasn't worth it. I was NOT sad to hear it was discontinued as it smells awful and stains everything! Austin had his second infusion last Thursday, again we're blessed it was uneventful. He is getting injectafer which has both a fast acting and a slow release component. So, we've seen his hemoglobin increase already and it will continue to do so over the upcoming weeks. We will monitor closely, but Dr. Goubeaux thinks he will only need 1 infusion every 2 - 3 months for now.
He's getting stronger everyday, we are seeing more and more personality and we've been able to continue to increase his feeding tube rate. He's now up to 55 mL/hr. His dietician updated me today that his current goal is 60 mL/hr to maintain his growth goals. Once he meets this goal, the next step is discontinuing his TPN. Crazy to think we are once again talking about this...it's not so far away based on the amazing gains he's been making!
We are loving being able to get outside, especially on walks and bike rides! Max is doing great! We continue to participate in the Virtual Walk for Amazing. Each week we get new challenges and are enjoying the ideas! We have about 10 days left! If you wish, we welcome any support for Team Austin! (Not that either Brian or I are competitive, but thanks to some huge supporters this year, our team is in lead!). Thank you to everyone! We always feel blessed!
Stay well and healthy! Hugs!
Brian and Tara
Max and Austin
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