Evening Update, September 6th

Annie had an abdominal CT scan today. We were sure that they would find something wrong with her appendix or an abscess somewhere or some other explanation for the increase of white blood cells. We even thought she must have some kind of internal bleeding due to her hemoglobin dropping so suddenly. However, yet again, no issues were found. We are stunned and baffled.

We spoke with our GI doctor about the results and decided on a new plan. Our goal now is to focus on getting Annie back onto her regular feedings so she can just come home. She's still receiving TPN nutrition through her PICC line which isn't really great for her, and the PICC line can become a source of infection after a while. Her PICC line is starting to fail again anyway and we don't want to put her through another surgery to replace it. So our goal is to stop the TPN, get the PICC line out, and get Annie home.

In preparation for her CT scan today, Annie had to get 480cc of liquid contrast through her J-tube in two hours! I was super nervous to push that much fluid--a rate of 240cc/hr--when all she's worked up to so far is 25cc/hr of pedialyte! But she did pretty well, only vomiting a small amount twice. So we have high hopes that we can start pushing her feeds and getting her transitioned to her formula by the end of next week. Tonight she is still on quarter-strength formula at a rate of 30cc/hr. Tomorrow we hope to get her to 60cc/hr and possibly even introduce half-strength formula. We'll continue to increase her rate and formula concentration until she is back to her regular feeds through the J-tube and then we will work to transition back to her G-tube.

Once Annie is tolerating her normal feeds, we'll remove the PICC line and get her home. Once she's home, we feel like she will be able to recover a little better. She has experienced a lot these past two weeks with going under general anesthesia twice, having multiple scopes, radiology testing, lab draws, straight caths, etc. That's a lot for her body to experience, so we hope that once we get her home, her body will calm down and her concerning lab values will improve, because we can find no other clinical explanation for those values.

Once we are home, we will follow up with doctors in their clinics to get blood drawn and check lab values, monitor pain, seizures, etc. We really don't know what direction Annie will go once she's home, but there are just no more tests to run at the hospital and no one knows what to do anymore. So we've decided that getting her home might just be the best medicine that she needs.

This has been one of the most exhausting hospitalizations we have ever had, physically and emotionally. Today, Annie was up in her chair so Justin just couldn't help borrowing her bed for a while. We are definitely looking forward to all being under one roof again.