October 7, 2011 - Day 6

4 months, 2 days since diagnosis
day #16 of current hospital stay

Riker is nearly drowning in her own mucus. I've never seen anyone, child or adult, with so much snot. I woke up this morning to the liquid sounds of her breathing heavy and coughing through it. Her entire face was covered in it. Since then we've been using a hospital grade sucker to keep it off her face and keep her nose clear. Just to be clear - she's not choking on it or having trouble breathing. It is all in her upper respiratory system. It is still awful to see and listen to.

So, I don't like the CNAs that were on her service today. After dealing with all the snot, I wasn't too worried. She does have mucositis. It does have the word mucus in it. So when the CNA comes in to take her vitals she says to me, "oh, does she have a cold?" Ok... a virus could actually KILL a person going through a bone marrow transplant. They do have ways to help treat her if she does have a cold but a cold would be very dangerous for Riker right now. um... why are you asking me??? So, I respond calmly, "I don't know but I'm going to wait for the doctor to tell me." The fact that the doctors didn't even come see Riker until after 1pm meant they were not the least bit worried. They informed me at that time that Riker was behaving exactly as they expected and they continued to be very happy with her progress.

Then, later, the CNA says, "She's still sleeping? Why's she sleeping so much? She doesn't usually sleep this much." Wow.... I don't even know what to say to that... So, again, calmly, I say, "Well, she's on day #6 of transplant. She's taking a lot of morphine and I'm sure that makes her very tired. She's a baby and they already sleep a lot to begin with." Unbelievable.

It's been difficult to find the time to give Riker a bath. She's supposed to get one daily but she's been getting on every other day at best. Between her being so tired and the nurses being so busy, there just isn't much opportunity. I cannot do it by myself because of her central line and all of the tubes and huge IV pole attached to her. I find that I really need to advocate in order for someone to make the time.

Today, I got the CNA to help me and we decided just to clean her up real good in bed since she was so tired. When we got into her left armpit, there was an awful rash. It ran right up into the folds on her neck. I feel awful. I don't know how long it's been there. I always try to clean up in there but I don't force her head all the way up and take a good look. Was it there yesterday when she didn't get her bath? Was it there the day before when she was in the bath but I just couldn't/didn't get a good look? ugh... I feel like an awful mother. I need to be more attentive. These sorts of things cannot be overlooked. These are dangerous times.

The doctor and nurses assured me that it was not my fault and a anti-fungal powder was ordered to treat the infected area. They also assure me that this is normal and it will be fine. I hope they are right. I would never forgive myself if this caused larger problems.

Other than that, though, she's doing well. We are frequently suctioning off any fluids that she coughs up in her sleep and she's resting comfortably. Hopefully we're peaking to the worst of it in the next day or so. I hear that she'll continue to feel this bad for another week or more but hopefully she won't get much worse. Still just counting down the moments...