Dear Son's been choking a lot tonight so I pulled out the Devilbiss Homecare Portable Suction Machine that I got a few weeks ago. I checked it out when I first got it however there weren't any instructions included. Why a homecare company send out a machine without instructions is beyond me. Anyway, since he was choking so bad, I got up at 1:40 a.m. to go on-line to find the instructions. I was able to download a pdf file however the machine still does not work. It appears I had connected everything properly however I don't have any suction on the machine. I can't quite tell if the knob is off on the side or if that is how the unit comes. It looks as if it's missing the knob however when I compare it to the photos in the instructions, it looks as if there isn't a knob there either. I can turn it though however I can't get the guage to increase and the guage controls the suction. I wish now I had watched this a little closer at the hospital. I hate this kind of thing so I typically look the other way.
The machine is rather noisy. When I got the script for a machine, I requested the smallest machine that was available. I don't have a lot of room here and when they write a script or order equipment, you have to specify what you want or you typically get older models or older equipment. (Typically equipment will be on a rental basis and convert to a purchase once the rental costs is equal to the purchase price.) I should have requested a small, quiet machine.
Dad had taken Dear Son Saturday night and brought him back today. He was discouraged because Dear Son was choking all day and couldn't clear his throat.
Around 2:15 a.m. I decided to check the medication sheet that I created to see if Dad had changed Dear Son's scopolamine patch. The patch needs to be changed every three days otherwise Dear Son can't clear his airways since the patch is no longer working to dry up his secretions. I write the date the patch was changed and the next date the patch is due to be changed. It appears Dad forgot to change the patch on time which explains why Dear Son was struggling on Monday. He had a copy of the sheet with the dates on there but this happens sometimes. I won't know for sure until I call him in the morning but I changed the patch now just in case. The effect is not immediate since it's time released but it should help him in a few hours. I read about how the patch releases the medication a few months ago.
Sometime, later today, I'll call the homecare company and see if they can send someone out to show me how to use this machine. It's very aggravating at times like this when you need to use this equipment and you can't get it to work.
This is especially aggravating for me since I really hate nursing. I don't want to be a nurse nor do I enjoy suctioning. I agreed to this machine only because I figured there would come a time I would need it and I was hoping perhaps that I could stomach doing this job to help Dear Son. I am only considering suctioning his saliva in his mouth and not any deep suctioning. I can't stand that. In the hospital, the deep suctioning drives me crazy and I typically won't let them do this. I worry that it's painful, shoving that tubing down him (You saw the bloody pictures I posted the last time they attempted it!). I understand why it needs to be done, I just don't like it.
It's really uncomfortable too, because I feel so much pressure to have to do this. The doctors and nurses can't fathom why I don't like this. They seem to feel it's something that isn't a big deal and that I should do it. I absolutely hate it. I don't think that just because I am the mother to a special needs child that I have to love all of this medical stuff. There comes a time when you just reach your limit on what you are willing/capable to do. Now I certainly love Dear Son and I think that I go to the ends of the earth for a lot of things for him. You will never hear me complain about changing diapers or taking good care of him but we all have things that we don't like to do and this is mine.
So it's 3 a.m. now and I am off to bed for a half hour or so. Dear Son has a 9 a.m. appointment in the morning so I need to start his g-tube feeding at 4 a.m. so it will be done by 8 a.m. I should probably start it around 3:30 a.m. to give myself a little more leeway but Dear Son has school today, if he's not too tired. Our appointment is at 9 and the bus comes at 11 a.m. to take him to school for 3.5 hours. If I start the feeding too much earlier, he'll be hungry before lunch. Somehow I don't think that he'll be up for school but we'll see. He went to school last Friday and had his eyes closed already while he was loaded onto the school bus. On the way to school, his aide said that he started crying and tears were streaming down his face. She asked him why he was crying and told him that it would be o.k. and that he'd have a great day. Apparently, that cheered him up and he stopped crying. In 18 years, Dear Son has never cried going to school. I worry that things are taking a toll on him and that it's exhausting him.
Update: I checked with Dad this morning and he forgot to change the patch. That happens sometimes.
Also, I received a comment regarding the fact that I shouldn't state that I hate suctioning or nursing. I have clarified that in the comments section. A better way to verbalize that would be to explain that I have a terribly weak stomach and suctioning is upsetting to me. It's embarrassing to me to have to explain this to people when they've made assumptions that I should be o.k. with all aspects of nursing since it's my child. The fact is that not all of us are capable of doing these tasks.
