Cold december night watch
Dad sleeps, for now, and I'm waiting for the first morning team to arrive and help dad change side in bed, and check the diapers etc. We never know exactly when they show up, entirely depends on who's working, and their other patients, but they are supposed to come some time between 5 and 6 in the morning. More often 6 than 5, but since we don't know, you have to be prepared.
SO, yes, I'm back on nights again until Sunday, when I hopefully leave for Lund for a few days of rest&recreation. We have had an interesting couple of days again, and I dare not quite believe I'm actually leaving town until I sit on that train down south.
Naturally, just after my last post it started snowing. And since then we live in a Christmas greeting card. It's cold, and just enough snow to be a bother. I'm slightly worried about the train on Sunday. Here's a pic of the yard outside mum&dad's kitchen window from earlier today.
And yesterday dad's other personal care giver, L, called in sick with a cold from hell, so my sister and I have had to jump in and do double shifts.What fun. She sent a text today that she hope to be back on Friday, but we're all kind of worried that she's still contagious then. She's hopeless with wearing enough warm clothes when it turns cold, and pretty much always catches a cold.. But knock, knowck, she'll be well enough to work next week so I'll be able to leave for Lund. If not, we're in the dumps..
Next fun thing that happened yesterday, or more like last night, was the usual. Dad pulled out the feeding tube at 4 in the morning again!. We had thought we were lucky that our brother was coming over for the Tuesday night watch so at least we'd get some sleep.. Which we did, it was just that my dear brother slept as well.. so of course dad pulled out bloody the feeding tube! It IS pretty obvious that our brother can't go on doing nights next year, since he can't be at school during the days, and then stay awake all night to check on dad, and now you DO need to be pretty awake and check up on him regularly.. we are just lucky that he hasn't pulled it out more often..
Anyway, since it was so cold, and we really didn't want to go to the emergency with dad, and since it went pretty well last time I did it. I decided to put in the new feeding tube on my own. It has been SO problematic and painful for dad when they've put it in at the emergency, and even last month, which I probably never mentioned here, when a new nurse came home and put in the feeding tube here it was pretty dramatic, and didn't quite work, and after the nurse had left I pulled it out again and put it in with some assistance from L. I've been observing the feeding tube thing SO many times, and seen how the good ones do it, and what NOT to do, and the main thing is that dad TRUST me, and I can read his distress signs, and I am NOT stressed when I do it. It really isn't rocket science. And now when I managed to put it in on the first try, I don't want to let any outsider do it again. It does NOT have to be horrible for dad. And as long as one does the usual check ups and tests for acidity and listens for air, it feels pretty safe. I watched an amazing video on youtube that a 10-year old girl with Crohn's disease have made. She puts in her own feeding tube EVERY night.
And yes, it probably is easier to feel that everything is right on yourself, but still Some very good advice in her video.
I am just so fed up with hospital policy, and I wonder WHY they send a patient home with a feeding tube without educating the principal caregivers on how to look after it? If they had taken the time to teach us how to change and put in the tube we would have saved dad SO much pain, and all those trips to the emergency this year. And why the homecare nurses don't do it remains a mystery to me. Anyway, dad has his NG-tube again, and it's new and clean, and I intend to change it more often now, since the old one looked pretty horrible. It says on the package that you're only supposed to have it in for 28 days at the most before you change it. Somtimes it's been three months between incidents! Also, I notice a huge change in how he breathes much better tonight. No old bacteria and bad stuff around to mess with his lungs.
So I'm continuing my crash course in medicine, reading up on dad's esophagus, and how not to mess up with the NG-tubes by påutting it in the larynx.
SO, yes, I'm back on nights again until Sunday, when I hopefully leave for Lund for a few days of rest&recreation. We have had an interesting couple of days again, and I dare not quite believe I'm actually leaving town until I sit on that train down south.
Naturally, just after my last post it started snowing. And since then we live in a Christmas greeting card. It's cold, and just enough snow to be a bother. I'm slightly worried about the train on Sunday. Here's a pic of the yard outside mum&dad's kitchen window from earlier today.
And yesterday dad's other personal care giver, L, called in sick with a cold from hell, so my sister and I have had to jump in and do double shifts.What fun. She sent a text today that she hope to be back on Friday, but we're all kind of worried that she's still contagious then. She's hopeless with wearing enough warm clothes when it turns cold, and pretty much always catches a cold.. But knock, knowck, she'll be well enough to work next week so I'll be able to leave for Lund. If not, we're in the dumps..
Next fun thing that happened yesterday, or more like last night, was the usual. Dad pulled out the feeding tube at 4 in the morning again!. We had thought we were lucky that our brother was coming over for the Tuesday night watch so at least we'd get some sleep.. Which we did, it was just that my dear brother slept as well.. so of course dad pulled out bloody the feeding tube! It IS pretty obvious that our brother can't go on doing nights next year, since he can't be at school during the days, and then stay awake all night to check on dad, and now you DO need to be pretty awake and check up on him regularly.. we are just lucky that he hasn't pulled it out more often..
Anyway, since it was so cold, and we really didn't want to go to the emergency with dad, and since it went pretty well last time I did it. I decided to put in the new feeding tube on my own. It has been SO problematic and painful for dad when they've put it in at the emergency, and even last month, which I probably never mentioned here, when a new nurse came home and put in the feeding tube here it was pretty dramatic, and didn't quite work, and after the nurse had left I pulled it out again and put it in with some assistance from L. I've been observing the feeding tube thing SO many times, and seen how the good ones do it, and what NOT to do, and the main thing is that dad TRUST me, and I can read his distress signs, and I am NOT stressed when I do it. It really isn't rocket science. And now when I managed to put it in on the first try, I don't want to let any outsider do it again. It does NOT have to be horrible for dad. And as long as one does the usual check ups and tests for acidity and listens for air, it feels pretty safe. I watched an amazing video on youtube that a 10-year old girl with Crohn's disease have made. She puts in her own feeding tube EVERY night.
Click to viewAnd yes, it probably is easier to feel that everything is right on yourself, but still Some very good advice in her video.
I am just so fed up with hospital policy, and I wonder WHY they send a patient home with a feeding tube without educating the principal caregivers on how to look after it? If they had taken the time to teach us how to change and put in the tube we would have saved dad SO much pain, and all those trips to the emergency this year. And why the homecare nurses don't do it remains a mystery to me. Anyway, dad has his NG-tube again, and it's new and clean, and I intend to change it more often now, since the old one looked pretty horrible. It says on the package that you're only supposed to have it in for 28 days at the most before you change it. Somtimes it's been three months between incidents! Also, I notice a huge change in how he breathes much better tonight. No old bacteria and bad stuff around to mess with his lungs.
So I'm continuing my crash course in medicine, reading up on dad's esophagus, and how not to mess up with the NG-tubes by påutting it in the larynx.