We got home just before the change of shift for the nurse (we scheduled the respite hours to go right into the night-time nursing hours so we didn't need to worry about a 'curfew'). I must admit, it was really strange to leave the nurse at the house with Kai. Although it was harder to adjust to having someone in the house while we slept. :-) It was so nice to be able to get out! We felt so rejuvenated after just a few hours away!
On Saturday, Emily and I went out while J stayed home with the kids. We bought a new chair for Kai! Our OT actually recommended using a high chair, and it works great! Kai loves it--he even fell asleep in it. The chair allows room to grow and reclines. Now Kai can get out of the crib more!
Kai has learned a new trick! He pulls both legs up and thumps the bed with them. He does it when he is excited, really upset, or just wants attention. We have also continued to see instances where he smiles and laughs. It is infrequent and inconsistent, but extremely encouraging.
Sunday morning I got up early so J could sleep in. The nurse reported that Kai had slept mostly through the night and that she had gotten all his cares done. Kai was still sleeping when she left, so I let him be. When it was time for his next feeding, I changed his diaper (extremely wet, but not necessarily an uncommon thing), changed his sat probe, and then went to connect his feed. That is when I saw it. His g-tube cares hadn't been done, and at some point his g-tube had leaked stomach contents. The gauze was stained yellow and had started to dry in some parts but was mostly wet. When I took the gauze off, Kai's skin was extremely sore and rashy. Needless to say, I was extremely upset. It doesn't help that the nurse herself has shown increasingly poor performance over the last few months, even though when she first started with us, she was one of our favorite nurses. She has had a lot of personal issues that I believe are effecting her work, and I should have known something was up Saturday night when she was annoyed that Kai was awake when she arrived. She also seemed very exasperated when Kai got fussy shortly after her arrival--in fact, I stepped in to calm him down because she basically gave up. By the time I went to bed, however, she had warmed up a bit so I didn't think anything of it.
This photo was taken several hours after the discovery, after I had cleaned and put ointment on to help it heal and it had a few hours of air time.
The problem has been promptly addressed and taken care of through the nursing agency. The nurse was very apologetic and has said she will be more diligent in the future; now, if only we could do something about nurses who call in sick leaving us without a nurse for the night...
Yep, that's right, it was another all-nighter for us again. Sadly enough, we just lose the hours that the nurse would have been here. Emily stayed up with me until I went to bed just after four. She stayed up even longer until six, when J took over. J then woke me up at eight-thirty so he could go to work and Emily slept until almost noon. I was originally going to go to bed at three but I hit a second wind.
I am paying for it now, though, because I am very tired. I know I will crash when the nurse gets here tonight. I am very thankful that Emily was here to help keep me awake and entertained. :-) It will be sad to see her leave on Thursday; we have really enjoyed having her here.
Kai was awake with us until three, when he finally crashed. So much for him sleeping all night long, which he has been doing with the nurses. Go figure he would be up most of the night on my shift. He is also wide awake and blowing bubbles now. Hopefully he will have a good nap this afternoon. :-)
Just a fun picture of Little Miss Z from yesterday.
On an extremely cute note, Zuri woke up from her nap today calling out: "I need a hug!" When she came out from her room she gave me a great big hug.
Moments like that are so precious.
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