Deep Breath...Here We Go!

It is amazing how much power this small piece of plastic can hold.

It holds the power to save lives, it changes lifestyles & buys many people time until they no longer need it. Hopefully tomorrow this piece of plastic will loose it's power over our lives & Milo will no longer need his "little piece of white plastic". Yup 24 hours now Milo will be trach free as long as his airway still looks good. YIKES! What do I do with a child who breathes out of his face instead of his neck?

Some changes will be nice, no more lugging around a suction machine & emergency bag! Won't have to worry about him pulling his trach out, secretions getting dry & stuck in the tube, random things and dirty fingers being stuck into the tube & most of all no more noisy compressor blowing humidified air in him all night long. OK so the last one will be nice but I'm not sure I can sleep without "white noise" in the house. It's been over 2 years of listening to a machine at night. The other night I left it off of him (just put on an HME) and I couldn't fall asleep, I could hear his every breath and I concentrated on that, guess I'll get used to it.


Some things will not be so nice, our nursing hours will probably be cut drastically or nursing (aka a free nanny) will stop in a month. We have such good nurses who feel like part of the family. It will be hard to say good-bye when the time comes. The other not so good thing is that he won't always have an emergency airway. Having that safety net has been very reassuring over the last couple of years. After seeing your child struggle for every breath and sometimes not even breathing the safety of a trach is a relief.


So here we go down a new path on this journey. This afternoon we will go to the hospital & Milo will be admitted. He will be capped & observed overnight, then tomorrow morning at 9:00 he will go to the OR with his fantastic ENT doctor who will do a bronchoscopy to take one more look and make sure his airway is good. He will most likely come out of the OR with no more trach, a naked neck. I have to admit I'm concerned about him coming out of anesthesia without his trach. He is not the most pleasant child waking up from anesthesia and I'm afraid of how he will handle not having his artificial airway when he is stressed. If he makes it through that though I think he will be just fine :0) We will probably have to stay at least 24 hours after the trach removal to make sure he is doing well then we can come home.


A naked neck, I haven't seen his neck without something on it in 2 years, 3 months, 1 week & 4 days. I think he will look strange without it, at least for a little while. Most of the time when I look at him (or any kid with a trach) I don't see it anyway but it's just who he's been for so long. I also wonder how attached Milo is to his trach, I wonder if in some way he will miss it...


I have to finish packing for this fun (insert sarcasm) trip. Keeping a 2 year old who is feeling well & healthy entertained in a small hospital room for 2 days is going to be no walk in the park. Because he had MRSA he is not allowed in the play room or to wander the halls while he is admitted. Luckily we are going to the floor with all our hospital friends so hopefully he'll be distracted, and some new toys should help too :0)


Well, I'd better run. Your thoughts and prayers during the next couple of days would surely be appreciated. I'll try to keep you updated & post pictures of Milo's naked neck as soon as I can.