Monday, July 18, 2011

In preparation for respite care

This is a really long post! I'm putting it out there to solicit your opinion.

Our agency is having somewhat of a difficult time finding respite care for Pumpkin. She has severe mental retardation and epilepsy so not just any family can "handle" her. In my attempt to make things easier, I've written out a long explanation of a typical day for Pumpkin. I'm hoping that our agency could forward it to someone considering watching Pumpkin. It might alleviate their fears to see what caring for Pumpkin looks like. Otherwise, this will be what I attach to the respite care forms. They give us three whole lines to spell out a normal day's routine. I'm going to need a little more room than that.

What I'd like to know is...
If YOU were doing respite for Pumpkin, does this answer all of your questions? Is there anything else you'd like to know? I don't want to write a book. But I do want to hit all the major high points. Any thoughts you have would be much appreciated.

Thank you!!!

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Caring for Pumpkin is much like caring for an infant. She can do very little on her own. A typical day for Pumpkin looks something like this. It is important to note though that Pumpkin handles transition well and doesn’t get upset if her schedule changes. She will need lots of physical prompting though (i.e.: taking her by the hand when you need her to go somewhere specific) as she won’t be familiar with your home or routines.

Pumpkin wakes somewhere around 7:00AM. In general she just lies in bed until someone comes in to get her. She will not purposely try to get anyone’s attention when she wakes up.

Diaper change, get her dressed, put on her braces and glasses.

When putting on the braces, be sure to make them snug. Not too loose or too tight. It is a fine balance between the two. However, they do need to be snug enough that her feet can’t wiggle inside them. Too much movement will cause bruising that becomes painful for Pumpkin. Too tight causes the same problem. When you take her braces off check every time for new red spots or bruises. Any mark that doesn’t go away after 20-30 minutes means that the braces were not put on her correctly. If that happens, depending on her level of discomfort, simply remove the braces until she heals.

Pumpkin prefers cereal for breakfast. I have fed her eggs before but she tends to refuse them more often than she eats them. She isn’t too picky on her cereal preferences. She will need her medication at this time. When finished, she needs to have her teeth brushed. She is pretty compliant with the process but might need physical prompting in order to actually spit in the sink as opposed to all over the counter. (I push her head forward so that she’s over the sink.)

Pumpkin will play with her toys all morning. She doesn’t require much to keep herself entertained. The other day she literally sat on the couch for nearly three hours holding her birthday balloon bouquet. She does best with infant/toddler toys. I stay away from toys that make noise (battery operated). Pumpkin has some autistic tendencies and will simply push a button over and over (and over and over and over) doing nothing more than making sounds. She does well with small puzzles, stacking toys, Duplos, blocks, etc.

Pumpkin does not let you know when she is wet or soiled. She generally uses 4-5 diapers a day. It depends on how much she drinks really. She does not have a bowel movement every single day.

In general, Pumpkin does not let you know when she is hungry or thirsty. At best she might walk into the kitchen. She usually eats lunch sometime between 11:00 and 12:00.

Pumpkin isn’t a particularly picky eater but she does often need verbal prompting in order to eat. Even with food that she likes we will observe her sitting at the table and doing nothing for a long period of time instead of eating. It can take her 1.5-2 hours to eat a meal if left completely on her own (no prompting). To work around this we do give her verbal prompts like, “Pumpkin, take a bite.” We will also put a timer in front of her and set it for 30-45 minutes (depending on what is being served and how much time is available for the meal). Pumpkin is learning that when a timer is in front of her she has to eat or else her food will be taken away. She will not starve herself! There are meals in which she eats very little. We have also found that Pumpkin can be overwhelmed when others are at the table with her. She often eats best after the rest of the family has finished and has left the room.

Pumpkin plays with toys in the afternoon. We do limit her TV watching because she was so addicted to TV when she came into care. Also, she does a very good job of entertaining herself without the TV. However, if you are inclined, she does enjoy Sponge Bob (it’s her absolute favorite!). She also likes Dora and the Disney Channel. In general, we limit her TV time to less than 1 hour a day.

Pumpkin doesn’t usually snack much in the afternoon. It really depends on how much she ate for lunch and what time supper is being planned. Pumpkin particularly likes yogurt and often has that for a snack. She also likes Goldfish, applesauce, quesadillas and other snack foods.

Supper is usually around 5:30PM.

Pumpkin plays for a little bit and then we do the bedtime routine. She takes her meds. She gets her teeth brushed. She takes a bath (usually every other day for this depending on how messy the diapers have been). Pumpkin needs full assistance during her bath, as she cannot perform any level of self-care. I recommend that her hair be braided before she goes to bed. If not her hair tangles quite tightly in her sleep and it is difficult to manage the next morning. Pumpkin does not need to wear her braces in bed.

Bedtime is between 7:30 and 8:30PM. Again though, Pumpkin is really flexible with things like this and can handle just about any routine. She doesn’t seem to get cranky if kept up late. She may just take it upon herself to nap the next day if she’s tired.

Identifying Pumpkin’s seizure behaviors:
For the most part, Pumpkin’s actual seizures are obvious. It’s taken a long time to figure this out and I’m still not 100% sure we catch all her seizures. But there appears to be a difference between what is part of her “psychomotor disturbance” condition (in which she randomly twitches and shakes) and her seizures. During an actual seizure she will fall to the floor and shake. This can last anywhere from 10-20 seconds to longer than 5 minutes. Most of the time though, her seizures are very, very short. After a short one she will often call out for “Mommy”. This is actually how we identify the difference between a seizure and her “normal” shaking behavior.

Any seizure that lasts longer than 5 minutes needs to be treated at home with the drug Klonopin. Simply put one of the quick dissolving tabs in Pumpkin’s mouth. It should stop the seizure within a minute or two. If after 5 minutes it hasn’t stopped the seizure, give her another tablet. If that still doesn’t work, go to the ER. (We have only needed to use the Klonopin once and it worked right away!)

Call 911 if any seizure appears to be causing problems with her breathing. As long as we’ve been caring for Pumpkin, this has never been an issue! However, during a bigger seizure she will seem to lose the ability to swallow and she will drool a lot. (This has only happened twice.)

We have also observed seizures in which she seemed to stop and somewhat crumple forward. For example, she was in our living room standing up. She stopped what she was doing and put her face down on the arm of the couch. About 5-10 seconds later she popped back up again but appeared to be somewhat disoriented. The day she did this she had nearly 2 dozen seizures.

Pumpkin’s medication has been increased since the day she had seizures like this. However, if Pumpkin was to have several seizures in a row, she can be treated with the drug Klonopin. This is more complicated to explain because the short seizures aren’t causing additional brain damage. The seizures in and of themselves aren’t dangerous. You have to determine if the seizure behavior is difficult for Pumpkin to deal with or not. If she simply has 1 or 2 in the morning and then 1 or 2 in the afternoon, she doesn’t really need the drug. However, if she has 5 or 6 in less than an hour, giving her the Klonopin would be a good idea.

Klonopin will make Pumpkin want to sleep. She may sleep for several hours – even missing a meal or two. This is normal. Her brain is basically “resetting”.

Often, after a seizure, Pumpkin will sleep more. This happens even if she hasn’t been given the drug Klonopin. That’s why I keep track of any naps Pumpkin takes. She may have a seizure that no one notices but the extra levels of fatigue can be monitored. Please just write down any naps she takes, when she’s choosing to nap and for how long she sleeps. I need this information for her neurologist.

The third kind of seizure I think Pumpkin has is called an absence seizure. This is similar to “spacing out” but is actually a seizure. This kind of seizure does not require medication of any kind. I just want to add this, as there are times in which Pumpkin will appear to be staring off into nowhere. This is normal for Pumpkin and requires no intervention.
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Did I miss anything? Is there anything else YOU would want to know if you were providing respite (for nearly three weeks)?

4 comments:

Teresa said...

That is fantastic. I would be able to provide respite for Pumpkin based on what you wrote. Great Job!

MamaFoster said...

i wish every kid came with a list like that. the ONLY thing it left me wondering is if she can feed herself yogurt/cereal with a spoon? i assume she can but i wondered....

CherubMamma said...

Thank you MamaFoster...I'll have to clarify that Pumpkin can feed herself.

You have to cut up most food into small bites. She handles yogurt pretty well. And she can do cereal - but she will make a mess similar to a 2 year old.

Good catch. I hadn't made that point clear enough. Thank you!

noisycolorfullively said...

This looks good. I would want to know if there's a trick to knowing if the braces are too loose/tight. I would be nervous about that. Can I fit a finger in? Can't? Etc.?

Otherwise, it looks pretty detailed. I'd feel pretty confident taking her in! Good work Mama!