October 17, 2011 - Day 16

4 months, 1 week, 5 days since diagnosis
day #25 of current hospital stay

Another rough night, another rough morning. Riker spiked another fever last night before bed. It was low grade and she was able to clear it up without the assistance of Tylenol. Still stressful and I did not sleep well. Riker moaned and fussed much of the night and it seemed she was in slight distress. Oddly, she did sit up and play for a bit last night. That has to be a good sign.

This morning, the nurse woke me to let me know that they had decided to have a consult with the ICU. From there, it was a whirlwind of events that didn't let up until the early evening. The fellow that looked at Riker could see that she was really struggling to breath and felt that it got any worse that she would need to be transferred up to the ICU. They prefer to do this during the day since emergent care is more difficult in the middle of the night.

Not too long later, another fellow came down and evaluated Riker. She decided that, even though Riker had not declined, she would be more comfortable transferring Riker to the ICU and giving her a more significant push of oxygen directly through her nose. She also indicated that intubating with such bad mucusitis would be very difficult and, if she declined, they may have to perform a tracheotomy so that she could breath. If possible, there first course of action would be to intubate through her nose as this would be easier than going through her mouth since her mouth is so bad.

This news was a relief and also devastating. I can see how uncomfortable Riker is and I only want her to feel better and not be in pain. I want her to be as safe as possible and take all the precautions that we can. However, no mother wants to hear that her child is going to the ICU. I want to hear that she is doing better. I want to hear that her counts are coming in and she is healing. I want her to be the wonder child that isn't effected by all the chemo like I've been so lucky to have up until now.

The transfer to the ICU was fairly quick and I barely had time to grab my bag before we went upstairs. I had to move out all our belongings so they could give her room to another patient. This was simply awful for me. I have 3 months worth of things for the both of us. Toys, blankets, clothes, food. I couldn't help but think about cleaning out our things and not taking my sweet girl home. I couldn't help but feel empty when that room was empty. I don't know how I didn't completely fall apart.

As soon as she was in a room, the doctors were quick to give her more oxygen and assess her. There were more than 5 in the room at the time of her transfer. It was unclear how much the intervention would help and if she did not improve, they decided that they would intubate in 2 hours under sedation. Again, it is easier to perform such procedures during the day than by emergency in the middle of the night.

After only a short period of time, Riker's respiratory rate dropped significantly and they were concerned that she was getting to tired to breath properly on her own. The decided to take more blood and measure her CO2 level again to see if it was more elevated. The doctors were shocked when they saw that her levels had dropped by half. The O2 is working! She looked like she was getting more comfortable so they decided not to intubate after all. :)

The good news is that Riker had an ANC count for the first time. ANC (absolute neutrophil count) is the magic number that we've all been waiting for. Her count was 60. She is considered grafted when the number reaches 500 for 3 days in a row. 60 is over 10% the way there. This means that things are starting to happen but it does not mean that her numbers won't be zero again tomorrow. Little blips are not uncommon and very normal during engraftment.

I truly believe that Riker is healing now. The doctors say that before the counts come in, all those cells go towards the area that needs healing first so you don't see them in the blood right away. I think that Riker's mucusitis looks worse because there are white blood cells in there. Just like a mouth sore that you or I might have, she is swelling as a "fat lip" does before it heals. Her mouth looks pretty bad - there is white flesh hanging from her pallet and some big chunks are actually falling off. However, this is all part of the process. The wounds are no longer oozing as much blood.

We shall see. I am hoping that we see a much improved Riker by morning. Already, she is sleeping and breathing more comfortably. She's not rubbing her mouth or face and all this rest has got to help.

The doctors are no longer concerned with her organs. They says that her liver, lungs and kidneys are all working as they should. Riker's bilirubin did not increase from yesterday which is a great sign. We don't know if this will change and there is still a possibility that they will go downhill. However, right now, this is great news one less thing to worry about.

Riker always gets worse at night. My hope is that will not be the case tonight. If it is, she will be sent down to the OR to be intubated. Again, just waiting.