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

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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.

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I don't know you but i guess you have had your hands full. Is it possible to get some type of VNS at least to help you through the post op period so he maintains his health. I can imagine that you feel if anything happened to your son while you were out of commission you would never forgive yourself. I am curious if you have a suction set up in the room. If you don't perhaps as a temporizing measure in case he has a seizure and is aspirating and you can't move him.

I hope you make out okay.

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Specializes in ICU.

Do you have any acess to respite care? We have facilities over here that are set up for cases such as yours where the main carer for some reason cannot continue for a short period or even just needs a well earned break.

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I am not sure what you mean by VNS but he does have a VNS(vagal nerve stimulator implant) to help reduce the # of seizures. I know we have respite around here but not sure if we would qualify anymore due to our income as my husband and I both work and it used to be anyway based on income. Thanks for the thoughts I will check into the respite thing maybe he is intitled to it and i just dont know it. Thanks again

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Specializes in Nephrology, Cardiology, ER, ICU.

VNS - visiting nurse society or VNA - Visiting Nurse Association. What does his neurologist suggest?

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Specializes in ER, NICU, NSY and some other stuff.

Have his docs considered a fundoplication? This might be something to look into.

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Specializes in Everything except surgery.

angelbear I agree with gwenith. Is it not possible to get some respite care??? I would talk with his PP and see what help you can get so you and your husband can sleep first of all, and so you have someone with him after you have surgery.

There is no way you're going to be able to do anything after a TAH! And you don't even want to be trying to do anything either! Seek help! God Bless you and your family:)

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I don't know if this works for you, but I have several friends who have children with severe physically and/or emotional problems. They all receive care, including respite care because the kids are eligible for disability. And that's regardless of income of the parents.

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How has the VNS been working for you thus far? Did you see much improvement? Is it possible that changing the implant to a new setting will help your son?

Hang in there. We'll be thinking of you.

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Before the VNS he was having an average of 45 grand mal seizures per month after VNS less than 20 per month.

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thats fantastic. I'm glad you at least have that on your side. One of the biggest benefits to VNS is the lack of side effects, specifically those common to AEDs. Has it helped his postictals as well?

How have things been going?

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Specializes in MS Home Health.

I know from having a TAH, that you will not be able to reposition. Can I ask what kind of bed he is on? Let me think on this some more. My one son had seizures as a child and I worried about this all the time.

I will post something more after I think about it,

renerian

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