It’s been a long day for little miss Rafi and I am very much on edge. As I type, I am listening to Rafi breathe and staring at the clock at the lower right hand side of the screen. I am waiting for her breathing to return to normal and time seems to be moving very slowly. I would be very surprised if I slept at all tonight.

Rafi’s been running fevers for the past two days. Her highest one has been 103.7, but Tylenol has been able to knock them down to normal levels very quickly. The fevers are to be expected so we are not worried about them. However, the doctors are telling us that the probable reason for the fevers is mucositis. That came quick. I really didn’t expect it for another 3 or 4 days. Mucositis is the inflammation of your mucous membranes, which are tissues that line your entire gastrointestinal tract. This affects your mouth, esophagus, stomach, intestines, rectum and anus. It has been reported to feel like a bad sunburn or heartburn. It is the main cause for pain, and some serious complications, in BM transplantation. So of course, Rafi had to develop it quickly. I know it is just starting but it is already horrible. Her voice is different than it was a day ago. Her cries are weaker and raspier and her voice is hoarse. Thank goodness for IV pain medications.

The old cliche is true however, “be careful what you wish for”. She was pretty uncomfortable and agitated when we put her to bed this evening so we gave her some ativan and, in addition to her IV dilaudid (which is new as of today), we gave her an additional little bump of dilauded. Well, it turns out all of that was a little much and her breathing pattern was completely different than normal. I really can’t describe how helpless I felt as I watched her clearly uncomfortable and struggling. It’s now almost three hours after the breathing became a little labored and she is doing better. Her breathing has become more regular although she sounds very congested. Her pupils are still a little small (a classic sign of being over medicated) and probably will be for about 2 more hours. Hopefully, she will sleep for a long time.

As for yesterday, the stem cell transplantation was easy and quick. She received 3 ounces of cord blood which took about 20 minutes to go into her. Then four hours later she received her mesenchymal stem cells which took about 15 minutes to transfuse. We had heard that with cord blood, there is a distinct smell that lasts for some time, up to days in some cases. Well, it smells like creamed corn. It really smells like green giant creamed corn. It drove Jackie crazy, because she has the most sensitive nose on the planet. I happen to like corn, so I wasn’t all that phased by it. But Rafi was in a good mood after it all until her temperature rose to above 103. Thankfully, the Tylenol took care of that in under an hour.