4/15/19 NG Tube

What a week Reese has had!
Removing her NG tube for her birthday went really well. I was nervous about this. She first got her NG tube on May 2 last year. At UCSF, the doctors believe in the importance of gut feeds (as opposed to IV nutrition) so this is placed preemptively… before mucositis hits (which is usually a few days after transplant.) Her NG tube was taken out for most of last summer, because her gut could not tolerate anything. Then we spent all of last fall trying to ramp up her feeds, starting at 2 ml an hour. You might remember SOUP from this time period. She could have the tiniest bit of chicken broth, which she savored, and nothing more. And the ice chips… ice chips morning, noon and night. It took many, many months for her to tolerate feeds, get off TPN (IV nutrition), and then finally take more than 1/2 of her calories by mouth. Basically, eating has been a challenge for this little girl, her gut was so damaged for so long. We were down to 2 feeds a day, via NG tube. So when she wanted her NG tube out for her birthday, I was a little worried. I prayed that she would be able to handle the calories on her own. This little girl, never to be underestimated or doubted, has far surpassed any expectation of her. Not only does she take EVERY SINGLE med by mouth, she is eating more than her sisters. Yes, I know what I just wrote. She is eating more than her sisters. And she is being adventurous, trying new foods. And the volume. It’s excellent. Basically, she put her mind to it. So I am happy to report that Reese is kicking butt in the nutrition department. You go, girl!!
Her galactomannan (fungal infection indicator) went back down to undetectable. Phew, this is a win!! I so look forward to the day I don’t have to worry about little particles in the air, that we all breathe, hurting Reese. Similarly, I would love to see the risk from her central line go away. Reese has a double lumen broviac in her chest, that was placed on April 18 last year. This line was necessary for transplant, but it also puts Reese at risk for dangerous infections, and is also the reason that she has to run to the ER if she has a fever. I’ve been told that Reese will probably need access for another year. So I would love to replace this with a “port” sometime in the near future. A port is sometimes used for patients who don’t need constant access, but limited access. It is located under the skin and unlike her “toobies”, it needs to be accessed with a needle. It is really perfect for her needs (infusions 1x a week.) The doctors are considering this and when the ideal time to do this would be.
ALBUMIN. If you follow Reese, you know that her albumin was a big topic of discussion last fall. Her “protein losing enteropathy” as she has been diagnosed. It was the last thing on her “list” to leave the hospital in December. Normal albumin should be above 3.3 (and at a minimum, above 2.2 for GI to feel comfortable.) Reese has been sitting around 1.6 since she left inpatient. Because she wasn’t symptomatic, it was left alone and monitored. Well, Reese’s albumin has been trending upward since she landed in Chicago. Today it was 2.6… this is huge!! It is an indicator of her gut healing and the fact that sometimes a girl just needs to go HOME.
In other numbers trending up since her Windy City return…. her hemoglobin is 10.1 and her IGG has seriously improved. Last week she received less than 1/4 of her normal dose of IVIG and it held. I was shocked and so happy.
Reese is still very much immunosuppressed and her safety is always on my mind. While I am grateful for her progress, I am aware that she is still in danger. I am hopeful that in the near future, Reese’s immune system will grow stronger and protect her. And I pray as I always do, please God, let this be real. This life. It’s perfection.
One year ago today, I boarded a little plane with Quinn and Reese, headed west to San Francisco and the unknown world of transplant. I am grateful that I didn’t know how hard that journey would be, and forever thankful for the year that saved her life.

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