And now, something lighter, because I am trying desperately not to focus on the fact that Dorrie may be coming down with whatever I am recovering from and Bob is in the middle of.
I am always seeing babies with lots of cute ties and ribbons in their hair. But grammy and I have been to many stores and we have found only a paltry selection of such things. Plus! Dorrie has a lot of long hair but it’s very thin, and I cannot get even barettes that claim to be no slip to stay in for more than about 5 minutes. So: where do all these hair supplies come from and how are they made to stay in place?!
I am not sure that people fully understand how tightly scheduled our days are. Basically, our nursing agency has a real shortage of vent/trach certified RNs who are willing to do overnights. Probably because they do not pay as much as a hospital would nor do they offer benefits, but that is another discussion. All other nights we have to watch Dorrie ourselves. Over time her sleeping has improved, but she is still not a sound sleeper and she often needs suctioning during the night, not to mention food and medicine. So whoever is watching her does not get the opportunity for good sleep. Sometimes not any sleep.
A typical day looks like this:
7AM – morning meds
8AM – set up pump with some water
9AM – Dorrie wakes up, water finishes, switch oxygen monitor to other foot, clean her up, give inhalers
9AM-12PM – play with Dorrie, do leg and arm stretches, have her sit in her chair, work on hand and head control. If therapy is coming it’s usually during this time.
12PM – hook Dorrie up to pump for lunch
12:30PM – lunch finishes, disconnect pump
2PM – hook Dorrie up to pump for mid-afternoon snack
2:30PM – snack finishes, disconnect pump, throw away bag, hopefully time for a nap (Dorrie’s)
3:30PM – med
4:30PM – more food
5:00PM – more food done, clean bag
5:15PM – dad gets home from work
5:30PM – dad takes over watching/playing with Dorrie while mom makes dinner
6:00PM – start pushing 2oz water
6:30PM – mom and dad eat dinner while keeping Dorrie entertained
7:00PM – start getting everyone ready for bed. Dorrie’s bath, clothing changed, trach ties changed + neck washed, med due, get Dorrie’s bed out and set up
8:00PM – more food, dad goes to bed
8:00PM – 11:00PM – depending on her nap and mood, Dorrie goes to sleep at some point in here.
11:00PM – meds, wash food bag
12:00AM – start overnight feed
2:15AM – dad gets up, mom and dad change over
2:30AM – mom goes to bed
3:00AM – add med to feed
Add in there suctions on average every 15m during the day and once an hour at night, plus intermittant gas attacks once she’s gone to sleep. She finds farts amusing during the day but at night it’s the end of the world.
Basically, the choice was: we can both sleep in the same room with her and both be up and down all night, or we can split the night up and both of us get possibly less sleep, but uninterrupted. We went for the latter. However, as a result any little thing can throw our schedule off.
Last weekend was super busy. Not for Dorrie, but for mom and dad. Mostly mom. The end result of dashing around, getting 4 hours of sleep on Sunday and then working for 9 hours was that on Tuesday I got sick. A cold that had been nibbling at the edges of my stamina for quite a while finally got a foothold and that was it.
One of us being sick is no picnic, because we try to isolate Dorrie from the ill person. Since our day nurse had taken Wednesday off, that meant dad had to take the day off from work. He would have had to anyway, I think, because I was in no shape to look after her. But he did this after already having had to spend the whole night looking after her, which is an impressive feat of stamina. Grammy was nice enough to come over on Wednesday night and stay all day Thursday so dad could go to work and mom didn’t have to contaminate Miss D. She came back on Friday to do the same during the day there.
So I have been sick and miserable and guilty for being sick and miserable. Dad has been harried and worried about missing work. And any time something like this happens I wonder how much longer we can keep this up. It’s wearing. I’ve spent less than 200 minutes alone with my husband since January 2008 and the longest stretch of that was about 100 minutes on New Year’s 2009 when we went in the basement and watched a movie together while we had a night nurse.
The problem is that the nurses we have had recently are just not that great. Our current night nurse is an older woman and she moves very slowly. She knows what to do, but I have no confidence that she is actually capable of taking physical action quickly in an emergency. So dad will continue to sleep on the sofa on nights when she is here, just in case. And our day nurse, who I have complained about before, is just not a calm person. I do not trust her not to lose her head. She is too easily flustered in non-emergency situations for me to feel comfortable without having seen her deal with something important.
On top of that, it’s just so discouraging that Dorrie hasn’t made more progress. She is still not sitting up, and worse, she still has not really gotten the whole head control thing mastered. Tests have been done and there is so far nothing anyone can really point to to say that this is why she’s so far behind, and why she hasn’t made any strides at all toward catching up. As we move further away from the month she spent in the sedative coma, it’s harder to think that is the root cause.