The whole "living with nurses" is getting both Katie and I down. We seem to have a ok group of nurses right now, however every time we have a new nurse, it takes quite some time for them to get to know Sadbh and understand her sleeping pattern, identify when she's hungry and more importantly when she's not.
It's also difficult when we try to train a nurse on how we want Sadbh cared for. Our goal is for consistency, however its becoming apparent that we are seeing some politics between a few of the nurses being played out.
It can be quite humorous at times, but more often than not it can be extremely frustrating.
We also don't feel comfortable leaving Sadbh alone in the house with any of these nurses, so that puts a lot of strain on the situation.
Imagine this, you are called down to feed Sadbh at 4am, nothing out of the ordinary there. The last thing you want to deal with at that time of the morning is a full on conversation about local swimming pools and what time they open, and the types of swimmers that use those pools at that time. Or about the Milk Carton Darby at Greenlake and if the rules are being followed and so on.
Or during the day, while trying to take care of odds and ends, you have a nurse alongside you the whole time, getting into your business.
Say if Sadbh is extra fussy and can't sleep, we can't just pick her up and bring her to bed with us, unless we want the nurse to come also. Instead we have to comfort Sadbh in her room with the nurse in tow.
Having a nurse is very necessary due to Sadbh's condition, and we are grateful for it, but it's so frustrating and exhausting. We both need to figure out how to leverage the nurses to best fill Sadbh's needs, and this is not going to be an easy task.
Friday, Katie and Sadbh decided it was time for a change, so they left the day nurse behind and headed off for a quick coffee break. What was supposed to be a 10 minute trip, turned into an hour and a half. Both felt extremely liberated and had a great time away from the house and the nurse.
Between Sadbh, work, planning for the wedding and everything else, the amount of stress that we are dealing with is incredible. I've never experienced anything like this in my life.
We had a couple friends over last night for the first BBQ of the season, and it was another reminder of how the times have changed. The babies and toddlers definitely rule the roost and dictate when the parents can eat and relax.
Fun times.
Earlier in the week I shared a video of Sadbh's crying while she was extremely upset. We really have not heard this cry since, however we are noticing that the sound of air coming out of her mouth and nose is becoming more evident in the last few days. This is normal development since her windpipe is growing and the trach remains the same size. During our last visit with Dr. Inglis, he could not hear this air leak and was concerned that we were not developing on the right track.
Hopefully he will be excited by this latest development.
Have a great weekend.
All the best,
Wayne, Katie and Sadbh.
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