Day 31

We are all in much better spirits today. We started trach classes this morning and started learning about different kinds of things that we need to know about to take care of Hailey at home. It is going to be a lot, but we will be able to do it with Heavenly Father's help. There are about 10 classes of 2 hours each and then a 24-hour period where we will room in with Hailey and make sure we know how to take care of her before they send us home.

Hailey has what they call a "cuffed trach" right now, which means the plastic tube going into her throat has a little balloon cuff around it. The cuff fills up the space in your throat so that all the air pressure coming out of the machine gets into your lungs. As long as Hailey has a cuffed trach she will not be able to make noise with her voice, which means no laughing, no crying, no talking. I have wept and wept over this particular detail about trachs. It goes against all my mom instincts not to be able to hear my baby cry.  Having a cuffed trach also takes away a lot of your sense of taste and smell, like most of us when we have a cold. We will have to carry a portable suctioning device, trach ventilator, oxygen, pulse oximeter, backup supplies, and a food pump wherever we go.  Hailey will be able to try to make progress on eating and swallowing, but I don't know how much that will be hindered by the lack of smell and taste.

The good news is that if Hailey's lungs can get stronger, we could move to an uncuffed trach and she would be able to make sound around that and even have a speaking valve that would allow air to come up through her vocal chords so we can hear her. I can't wait to get off the cuffed trach so that we can hear her again. I have no idea how long that will take, but I am praying like crazy that it will be as soon as possible. The muscles in Hailey's upper airway are not being used at all with a trach, so those will get weaker and speech therapy will become even more important to keep them up.  I guess there are a lot of speech therapy exercises and then of course sign language so that Hailey will be able to more fully communicate with us.

We just have to pray like crazy that we can get to an uncuffed trach as soon as possible and that she will be able to get rid of the trach at some point. They aer thinking at least two or three years, but it may even be for her whole life. Lung tissue continues to grow until age 7, so our hope is that the trach will allow her body to send nutrititon to her lungs and grow that tissue so that her lungs will be better in the future.

We will also have to be more careful about germs since they will have a direct pathway into Hailey's lungs. That means being super careful during cold/flu season.

The best news of the day is that Hailey was smiling and playing with us today. She gave us both huge smiles this morning! Her eyes are still dialated and a little unfocused because she is still on heavy sedation meds, but she just kept smiling and even tried to put the binkie back in her mouth a few times. It is so good to see our sweet little Hailey is still in there. We have missed her so much!!

We will be able to hold Hailey as soon as she has her first official trach change somewhere between 3 and 7 days after surgery. We are waiting for a custom trach to come in so that the surgeons can do that since the trach they put in doesn't fit her very well.