Epieiptic son having 3 bouts of aspiration pnemonia since april need suggestions

Nurses General Nursing

Published

Most of you know my son is epileptic and has been since birth. His seizures are intractible though they occur more in his sleep now than any other time. I came home from work Easter morning and found him in bad shape we called an ambulance and he was intubated and life flighted. He had a rough time of it at that time but made it through. He is now on his 3rd bout with aspiration pnemonia since Easter. These last 2 times they were able to secure his airway with a nasal trumpet give him 02, IV ATB and hydration and send him home with in 24 hrs. I have been home these last 2 times so we caught it quick. My hubby and I no longer sleep at the same time ever. It works out ok because I am 3rd shift and I stay up when I am home he sleeps with his dad when I am at work. He is 16 he is now 5'3" compared to my 5'2" I can nolonger move him at all. We have the head of his bed elevated and encourage him too sleep on his side. I am out of ideas on how to prevent aspiration. I am having a TAH in one month and I am scared because I have a hard time repositioning him now it will be impossible after my surgery. I am scared for him. I know I am a nurse but when it comes to my own child it is a completely different story. Anybody have any ideas? I dont want my son to die from this and I know it is a risk but I also know I can prevent this to a certain extent. What can I do? I will gladly take any suggestions. Thanks in advance for trying to help me.

My son is almost 19 and sufers from seizures. He is also autistic.

He is 6' 5" and weighs inexcess of 220 lbs.

during a seizure I to am unable to reposition him

Our specialist taught me to grab him by one of his feet and just keep walking in the direction a want to roll him. you must walk in a direction so one leg is crossing the other

Belive it or not it works.

I have used this nifty trick at work to roll a 400 lb man. to repositon in his bed.

I am 5' tall and only wiehg 1oo lbs

Good Luck with your surgery

Specializes in NICU, PICU, PCVICU and peds oncology.

Angelbear, how are you feeding your boy? If you're using a gastrostomy, it would be worth looking into having a longer tube placed with the tip in the jejunum or slightly beyond. It's very hard to reflux from the small bowel, even in the throes of a grand mal seizure. That would decrease his risk significantly. Try to have the head of his bed at about 45 degrees. Use whatever positioning devices you have and improvise with towels or blankets to keep him upright. You may need to devise a sling to keep his head up; I've done this with a long rolled sheet passed between the kid's legs then attached to the mattress at or near the top corners with safety pins. You could also use a woven (not knitted) fitted sheet, by putting one end of it over the head of the bed, passing the middle part between his legs then anchoring the ends to the mattress at whatever level works best.

I agree that you need respite for at least a month or more after your own surgery. Somebody somewhere will be able to help you! Have you contacted your employee assistance program (EAP), if you have one? Nothing to lose there, girl. Your own recovery will be affected if you are constantly worrying about your son. I wish you all the best in your struggle. Please let us know how you're making out.

Specializes in MS Home Health.

Hugs to you angel. As a mom who had a child with seizures I feel your pain.

Hugs again,

renerian

We are checking into the respite thing. All the advice is good and I want to thank each of you. I do fear Imay be checking into the respite a bit late it takes time to get these things arranged. One week to go. I am a nervous wreck. Thanks for trying to help.

+ Add a Comment