Day 32

Today was a good day. Jennifer and Brandon (my sister and brother-in-law) brought the girls down last night and helped us watch them this morning so we could attend our 2nd trach class. Then, Ben's parents surprised us by coming down for a little visit too. It was good to see them and good for them to get to see how good Hailey is looking today. (We had all been pretty worried over the course of the week). Her color looks really good. She is nice and pink. Ben and I are getting used to listening to her with the stethoscope (which we had done before a lot but without any real training) and checking her pulses. We have to be very proficient in those things before we go home.

We learned that because Hailey is not using her upper airway she will have no way to clear secretions out of her nose on her own so learning how and when to do that was part of our trach training today. Your body produces 1 cup of secretions per day and moves them through your lungs to keep your lungs lubricated and functioning properly, but you can run into problems when your body doesn't adequately clear those secretions and they start puddling in your lungs or in your sinuses. Those puddles become breeding grounds for infection if not taken care of, so that is why we needed all the suctioning training. They had us practice on a piece of PVC pipe with a hole in it and a trach in the hole, but it still made my hands a little shaky to put a tube down Hailey's trach and suction her.

Honestly, I have to marvel at our bodies when I am taking these classes. It is amazing all the things you have to do to replace the function of a working nose, mouth and lungs that you have always taken for granted. Your nose and mouth automatically warm, humidify and filter the air that is coming into your lungs. I have never even thought about that. Since Hailey has a trach there are a whole bunch of different ways of doing those things for her since we are bypassing the upper airways. The more I learn, the more I realize I do not know and the more humbled I am to have a body that works so well and to find out that, even for Hailey, there are lots of things that work very well!!! All these complex and amazing systems that keep us going are incredible.

The girls are starting to have a really hard time with being apart from us. Any time we are apart for more than a month it really starts to wear on them, so we spent some quality time together today. Even so, they both had a few tearful breakdowns about wanting to be home together. It is hard not to be able to do that for them, but I am hoping that soon that will be a possibility.

They weaned some of Hailey's sedation meds, which is good. We still have a LOT to get rid of because she has been sedated for so long, so every one they take off is a victory!! Hooray!!!

It sounds like Ben and I will have trach classes until next Thursday and then after that it will be up to Hailey how much more time we spend here at the hospital (assuming that we can master the things they are teaching us fast enough).

Oh, another positive thing that I wanted to mention because it makes us feel a little better is that the hole in Hailey's throat is only the size of her pinky. That is the measurement they always use for trachs. The tube they put on the end of the tiny tube is much bigger so it looks huge, but the actual hole is 3.5mm. I think I may have been in the hospital too long because I am consoled that the hole in my daughter's windpipe is at least small :-) but hey you've got to find the silver linings right?

Hailey smiled at us more today too, which makes us feel really good. I'm still really missing her little voice. That is the hardest part for me.

Anyway, many thanks for the prayers, the kind words and support. Hopefully more good news to come!