Being a parent of a child with a trache is fraught with change. From the actual condition of our children to changes in DME companies to nurses. Everything is subjected to change at a moments notice. For a control freak like me this is the most difficult. I was just talking to a friend the other day and told her that I had just realized that we are going on our two years anniversary of our NICU discharge. God is merciful and great! We only had one hospital stay and we shouldn’t even have been admitted. But that’s another story! I cannot imagine that it has been 2 years. It seemed a long time but it’s strange that the only thing I remember was how difficult it was at the very beginning, the events in the middle when he would get sick but stay at home, and then I have the present. I could recall other changes and events because most of my nurses were the same ones that started this journey with Isaac. They come every week, most of them 2-3 times and yet they can still remark on changes that they have seen in him. I’ve had nurses come and go. Some I was sorry to go and some not so much. I wish them well either way. I could say I have had lots of conversations with each one and know that they love Isaac with all their heart. It was important to me that my nurses have a genuine love for my son. I could teach them skills until I am blue in the face but it is extremely difficult to teach love.
Lots of changes have happened over the two years. We stayed out more in the living room now than before when it took 30 minutes just to go out of the bedroom and stay out for maybe 10 minutes only. I was so scared and nervous to take him out of his bedroom and essentially my comfort zone. Now we use the living room to hang out and just use his bedroom for napping, changing diapers and sleeping at night. We do tub baths in the bathroom versus bed baths. It took me a while to bring him to the bathroom for tub baths but it became easier after a few months and I never wanted to go back to bed baths again unless he is sick. Of course now he is off the vent all day and for most of the night and it is easier to transport him anywhere in the house. A lot has changed and they are for the better. I have gotten braver and more willing to get out of my comfort zone mainly because my nurses like pushing the boundaries I have set. I may not like it all the time but they encourage me to do more things with Isaac that I would probably not be able to do had I just depended on my own efforts.The people and the changes that happened over the years had a purpose and a goal. I did not see it while it was happening because I was too close to the change but I can now look back and reflect that it was all good.