Last week it seemed that the white blood count was going down. Unfortunately, Monday it started to rise again. A good thing that happened Monday was we started feeding Daphne again. She started with 3 mL/hour of breast milk through her NJ tube and now has worked her way up to 9 mL/hour. She has tolerated her feeds well so far.
Tuesday another setback was putting Daphne back on dialysis. Her kidneys weren’t too bad, but since the lasix dose she needed to help her pee was hard on her kidneys, dialysis seemed like a better choice. Also, a throat swab came back positive for the CMV virus. We are not sure where it came from. Pre-transplant she was negative for it and both her donors were negative for it too. The two possible ways this might have happened was either from some of the blood she received or that she already had CMV despite what her pre-transplant test had indicated. CMV is very common. I was told almost 90% of the population will have it by the time they reach 18. For most people it isn’t a big deal, but since Daphne’s immunity is suppressed she will be on meds for it for the rest of her life.
Wednesday Daphne had a CT scan scheduled. They were worried that the fluid accumulating in her tummy might be infected. The scan didn’t indicate that the fluid was infected. Unfortunately, it showed other things. It found a clot in her splenic vein. The clot has been there long enough that her spleen is dying. Since you can live without a spleen they do not plan to do anything about this. It was terrible to hear the word clot again, but they think the clot was there for a while and not a recently formed one. Since the spleen helps the body fight infections she will also need meds for this for many years. She will also need extra vaccinations. They also found some spots of dead tissue on her pancreas. Her pancreas numbers have always been good though, so they expect it will fully recover.
Thursday they decided to check the fluid in her tummy by removing some with a needle and testing it. The fluid looked much darker than it should have, so there was some talk of the possibility of a bile leak. Testing on the fluid so far has not indicated that there is a bile leak. We are so happy about that! It also doesn’t indicate that there is any bacteria in it.
Friday Daphne underwent more testing! She had a biopsy in the morning. We are still waiting for those results. The reason she was given the biopsy was because some of her liver numbers are up. Rejection was mentioned, Dr. Yap said they would increase her anti-rejection drugs if this was the case. She also had another procedure – I don’t remember its actual name – but basically she got a contrast dye enema followed by an x-ray to check for any leaks in her bowel. One of the surgeons was worried that her bowel may be perforated where the two ends had been connected. Her transplant surgeon didn’t think this was the case, but thought we should do the test just to be sure. The x-ray did not show a leak! There was some concern that the bowel looked a bit twisted, but the transplant surgeon said it was fine.
So basically our week has been full of testing, interspersed with bad news, but overall things are still ok. And a wonderful thing happened on Friday! When Brad and I were talking to Daphne during one of her awake periods she was reaching up for our faces with her little hand. She did that with me for quite a few minutes. It was the sweetest thing! I really needed that. I was really starting to miss my baby.
I should also mention the Donate for Daphne blood drive we had on Monday. We had a great turn out. It was wonderful to see everyone come out in support for Daphne. In total we had 22 people donate blood just that day! And there are many others who have booked different days.
I’ll end this post with a picture of our happy little Rowan at her dance class.