Now that A has no trach and no g-tube, we lost all of our nursing care. We were fortunate enough to have a nurse come help me, ever since A was about 6 months old, all paid for by her Medi-Cal. The first year and a half we had an amazing nurse who came 2 days a week. (We were actually eligible for much more nursing, even 5-7 days a week if we wanted it, but I'm a very hands-on mom and only wanted the 2 days of help). Unfortunately, her company folded, and we had to find another company. After a bit of a search, we found a new one who gave us another amazing nurse 3 days a week (I had only wanted 2 days a week, but they had insisted on 3 days). This new nurse was with us for almost 2 years, up until her surgery to remove her tubes. We were very fortunate to have had such fabulous nurses care for A, and I know it. I read lots of blogs, and talk to other people, who are not as fortunate as to find such competent and loving care. Both nurses truly loved my daughter.
Now I have no nurse, and am with A all the time. All. The. Time. This is not new to me....when D was a baby, and up until A was born (when D was 26 months old) I was with HIM 24 hours a day. I had no nanny, no family in town, and only rarely even hired a babysitter for J and I to have a date night. Where I went, he went, and where he went, I went.
Having a nurse to help with A was very liberating. I was still with both of them much of the time, but I able to have a lot of time to myself. Because A had the trach, she needed someone to stay at school with her (not inside the class, but sit outside in case she needed suctioning or other trach care). My nurse sat there 3 hours a day, twice a week. On the rare times she called in sick or was on vacation, I had to do that, and it was very boring and confining. I was so glad to have help doing that! In addition to sitting with her at school, the nurse would watch A so I could have much-needed "me" time: to run to Target or the supermarket by myself, to exercise, to meet a friend for coffee, to rest. And an unexpected bonus was that D got lots of "special time" (just me and him)....if A had been born healthy, I would never have hired a sitter to watch her so that I could spend time alone with him, but we ended up having lots of dates getting ice-cream, going to the park, etc.
Now it's me and A, all day every day (D is in summer camp, but when that ends in a week it will be both of them until school starts!) Not that I'm complaining. First of all, I'm thrilled that she has her tubes out, and it's 1000% worth the trade-off of having no help. Secondly, I CAN take her to daycare if I needed, like the daycare at the gym I took her to last week. Even a friend can watch her if I wanted to ask. Thirdly, and most important, she is a gift, and the time I get to spend with her, while tiring at times, is a blessing. She is getting healthier every day, and I get to enjoy that....
Special Needs follow-up
20 hours ago