Wednesday, December 21, 2011

December 17, 18, & 19, 2011 - Day 77 - 79

6 months, 2 weeks since diagnosis

We had a rough weekend. After the bicitra was increased, Riker started to vomit and her diarrhea got really bad. We went through nearly a dozen clothing changes a day for the past few days. There were many calls into the on call doctors at the Jimmy Fund Clinic.

I don't think the bicitra is the cause. We only added an extra dose and now she's throwing up after all of her doses. I've known her stomach has been bothering her for weeks. I haven't been able to prove it but she's been uncomfortable and waking frequently during the night. I think that the bicitra is just the last straw on her poor tummy.

In the beginning, Riker was on Bactrim - a prophylactic antibiotic. She was throwing up so much that we had her on IV nutrition because she wasn't keeping down enough food. In the end, the antibiotic was the cause and it's been listed as an allergy ever since.

Riker is a risk for all kinds of infections - one of which is a very dangerous fungal infection in her lungs. One mold spore can take plant and colonize within hours smothering her and killing her. Bactrim is the very best medicine to treat and prevent this. So, since she's 5 months older, we've got her back on it. She's been on it for weeks but I think it's just been getting worse over time.

Thankfully, after moving around her Bactrim doses, she's holding down more of her feeds and the diarrhea seems to be getting better. The medical staff thinks it's important we try to keep her on the antibiotic and I agree. A visiting nurse came out to draw labs today and her electrolyte levels came back perfect. We must be doing something right. And even though Riker's puking, it doesn't seem to be bothering her very much.

The weekend was stressful for all of us. I was convinced we were headed back to Boston. At the very least, we' were going to the emergency room in Portland. The on call doctor this weekend was great, though. She put a lot of trust in me to assess Riker and we avoided intrusive measures. Riker wasn't running a fever and she did not appear to be dehydrated. Basically, I don't want to go into the ER unless we know she'll need to be admitted. The doctors there won't know what to do with Riker and she's at risk every time she steps into a hospital.

In the end, she is doing just fine. The visiting nurse will be back in 2 days to check her chemistry again and hopefully Riker will stay stable. We're scheduled for a clinic visit at the end of the week and hopefully we'll stay on the right path.


  1. I can only imagine how stressful this must be. But you are clearly doing an amazing job! This is just another step on your journey to a healthy baby girl. She is so close! I hope you guys have a great Christmas!!

  2. Tory
    You are so honest in your posts are a realist and that will get you don't gloss anything shoot straight from the heart and that is healthy..I am as always so happy that things are going so well for your beautiful little family..Have a good Christmas..god bless your beautiful girls..Jen Sprague

  3. Are you allowed to give her pro-biotics? I had to be on Bactrim long term and that stuff is rough. After 2 weeks of tummy troubles the nurse told me to start taking double doses of pro-biotics (can't remember the name) and within 3 days I was so much better and within a week the bactrim didn't bother me at all. I don't have a clue if this is possible but maybe you can ask. I know our pharmacy has one that is good for babies.