Getting nervous about DS

Terri

Well-Known Member
I have my pre-op testing and appointment with the surgeon Monday. I know if everything checks out on the tests, which I don't know why it wouldn't, they are going to probably want to schedule me quickly. I am not nervous about the surgery itself. I am nervous about the recovery, protein, and such. I am not nervous about once I get healed and keeping up with vites and protein, just recovery. I know I am ready for and want this surgery. I perused DSfacts.com along with every DS board and facebook page I can. I also know I have many experienced people out there to garner information from when I need it in the future. But right now:


1.) I have a sweet 13 year old son, who is special needs. I am his main caregiver. He is totally immobile, is 4'4" tall (I am 5'2") and weighs 65 lbs. Dad works 4 pm to 4 am, he will help when home. I have nurses that will be here some to help as well. I am just worried about the what ifs when I am home alone with him. I also am worried that he will notice mommy's not packing him around.

Brief background because special needs does cover a lot of territory. I had perfect, uneventful, full term pregnancy. Normal delivery. When he was 2 days old it was discovered he had strokes inutero . There was a blood clot in the placenta which cut off his oxygen, that did not show up on the one ultrasound that was done. Not looking for sympathy, just I know people have questions and wonder.

2.) I am sure others had the same worries about getting the protein, vitamins and everything else in once you get home. I don't like coffee and I see that is how a lot get their protein down because the shakes make them gag, so that worries me. I don't know why but the only way I can eat mayo is in chicken salad and it can't be a lot, so I am worried about fat. I already take quite a few vitamins along with blood pressure, cholesterol, diabetes, and anti-depressant meds but I am worried that I won't be able swallow my pills all of a sudden.

I am usually this very strong, I-don't-need-help, independent woman. I know I am just getting myself worked up about nothing. I have few, but very supportive family team and I have had other surgeries including open, double hernia repair with an 8" scar, carpal tunnel surgeries and others that I have made it through recovery fine. I wonder too if the other surgeries I didn't have as much time to think about before they happened.

Plus my daughter is graduating college, which I am very proud of her but nervous about as well.

I guess what I am wanting to know is were others worried liked this? I mean this is all I can think about.

@southernlady you may want to move to lounge or different forum. When I started out it wasn't supposed to turn into a whiny, feel sorry for me and tell me everything is gonna be ok post.
 

Elizabeth N.

Herder of cats
Terri, you already know what to expect with a gut surgery. Try planning your son's care with those experiences in mind. You are NOT going to be able to move him for a while, so you're going to need to have whatever additional care in place that is pertinent to cover your complete inability to do physical work with him. If that means you get someone in for 24/7 coverage "just in case," or whatever it takes....You can't fudge on this.

Don't worry about protein powders or mayo. Just get healed up. The recovery from surgery is very different from living a DS life. Just hydrate like crazy, keep your pain under control and move around enough to prevent blood clots. Keep it simple. After a couple weeks, you'll be ready to try a food or three, and then you'll see what works.

Remember the rule of thumb about 30 grams of protein by 30 days out? I promise you will be able to find SOMETHING that you can ingest and keep down to get in that much protein. It'll be okay. You can do this :).
 

southernlady

Administrator
Staff member
Terri, as long as you have help, you can still snuggle with him which will make up for not being able to pick him up.

And congrats to your daughter. Does she have a job already lined up or will she be back home while job hunting? If she is home, she could be a BIG help while you heal.
 

hilary1617

First time at the rodeo.
Terri,

Your concerns are absolutely logical and just demonstrate that you are a thoughtful, realistic individual.

In regards to your son, you *will* need help in order that you don't lift him and injure yourself - maybe a neighbor or friend or your daughter could plan to sleep over while your husband is at work - just in case? Once out of hospital you should be able to be able to be alongside while someone else does the lifting and bending, so while the routine may be a bit different, you should be able to provide support that will lend comfort.

For the vitamins/pills (and I have to take many more than the average DS'er), it was daunting at first, but I've come to down them the way I used to eat popcorn. I put together my pile and mindlessly grab and swallow them while talking with my DH or eating a meal. I find they go down easily and the pile just disappears if I "eat" them without really focusing on them.

There are alternatives to the shakes and ways to hide the flavors/textures outside of coffee which will work during recovery, though immediately post-surgery, the main focus will be hydration, and you will be able to work up to the protein as you heal. I have protein "broth" from unjury a lot and they have a "cheese" sauce which is akin to Kraft macaroni and cheese that I sneak into recipes.

Though your tastes may change post-surgery, it's not a bad idea to buy some small quantities and explore some of the protein options that are available. Fat is easy to find in butter and cheese and a bit down the road, BACON!

Wishing you all the best!
Hilary
 

MyNewLife

Roast Beef for dinner (shhhhh)
Terri,

You have nurses that will come to help, I'm assuming through Medicaid PA. Have your provider apply for additional extra hours when you will not be able to life. I can see you getting full coverage when your husband is not home. Set it up so you can support your son, take care of yourself and not need to do any physical caretaking.
 

Munchkin

Full of Fairy Dust
Sounds normal to me! You have a lot on your plate and keep in mind you will not be able to move your son for 8 weeks or more. So you will need help. You will be able to take care of you but that's about it!

Don't worry about coffee and food and shakes etc. That will work out. In the very beginning, all you need to worry about are the 2 H's. Hydration and healing. Doesn't matter too much what...just something. Even if it has some carbs. Get some gator aid of some kind.
 

Larra

Well-Known Member
Terri, you're already had such great advice about how to deal with your son's needs, so I'll just point out how much easier it will be for you to care for him after you lose a bunch of weight and a bunch of comorbidities. Recovery is tough, but temporary. You have many years of potential benefit to look forward to. You will get through this difficult time and it will be well worth it.
 

JackieOnLine

Moderator
Staff member
good point, Larra.
Terri, I may have mentioned this before but I found Syntrax Nectars to be excellent as they go down like water.

I drank Strawberry Kiwi everyday for a long time.
 

Terri

Well-Known Member
Thanks all of you!! I have given his caseworker and the nursing company heads up that I will be having the surgery within the month, so they have the paperwork ready to request extra nursing hours, just needing the exact dates. I have bought every water flavoring Walmart has, what I don't DH or nieces and nephews will drink. I have ordered the variety packs of protein drinks from Vitalady as well as getting some at The Vitamin Shoppe. I have bought 8 boxes of SF popsicles. I have bought my husband 2 weeks worth of the "pop in the oven" casserole type dinners. He takes his lunch to work so I have bought a month's worth of "lunchy" stuff for him. Thank goodness I was Walmart because anywhere else they would have thought I was crazy my cart was nothing but popsicles, lunch meat, and the frozen casseroles. I also plan on cooking extra every time I fix dinner between now and then, so I can freeze him some of that as well. I am doing the broth popsicles too so I can just pop them in the microwave. I have bought all of the suggested vitamins that Vitalady suggests, waiting on the monthly pill organizer.

I am doing to DS for me but I am also doing it my son can reaps the rewards of it as well. I want to be around as long as possible for him. I will definitely be cuddling him during surgery. He may not be happy about because in some ways he is a very typical 13 yr old boy.

Again thank you all. Sometimes I just need to hear I am no crazier than anyone else.
 

Terri

Well-Known Member
Terri, as long as you have help, you can still snuggle with him which will make up for not being able to pick him up.

And congrats to your daughter. Does she have a job already lined up or will she be back home while job hunting? If she is home, she could be a BIG help while you heal.
She is 2 hours away and plans on living there. She does plan on coming home for a few days when I get home from hospital to take care of me while my DH is working at night. DH plans to burn most of his vacation sitting at the hospital with me.
 

southernlady

Administrator
Staff member
Another way to handle freezing broth is what @4KidsAndaDog did...I suggested using a muffin tin to make 12 at one time. Then just pop them in ziplock bags and defrost as needed.
 

shann

Now an Angel in heaven
Hi Terri,
I think everyone has covered your issues really well, but I want you to know that it's perfectly normal to be nervous now! You have a great plan in place.
Now try and to relax if you possibly can. It's not the same for everyone so you'll probably have your own issues. I didn't have any trouble with protein shakes - I do drink coffee shakes, but I can drink them without coffee too. They taste just fine to me. As far as vitamins, I had more trouble with those. At first, I had to take them one at a time with plenty of time in between (yes, it took forever). If I didn't, I would gag and they would come back up. I still can't take all of mine at once - I have to break them up into 3 groups or I'll burp them back up for hours. Anyway, enough of my issues, just take a deep breathe and realize that whatever your personal issues are, you'll face them and we'll be here to support you!!

I hope things go really smoothly for you!! <3
 

Sandy

Been Around A While
Hi Terri,

Sorry I'm a bit late to the party. I have a fully-dependent, non-ambulatory, special needs daughter so I thought I'd chime in a bit. I am my daughter's sole caregiver under normal circumstances. When I had my DS I made arrangements for someone else to provide care for my daughter, in my home, while I recovered. This meant that I didn't do any of the physical stuff related to my daughter's care. No pushing, pulling, repositioning, lifting, moving, etc.

I was worried that my daughter would miss the playing, snuggling, etc. and have a difficult time with the changes but I found alternate ways to still have those types of interactions with her and she was remarkably (surprisingly?) adaptive.

The biggest challenge I found was honoring the weight limitations during recovery. Even though I was healed on the outside, and I was feeling better with strength and stamina, I had to remind myself that the human body still requires 4 - 6 weeks to stitch together soft tissues internally so I needed to avoid anything over 10 pounds for 6 weeks.

You'll do great. Your son will do great! It's only a few short weeks out of the rest of your new healthy life. You've got this!
 
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