My baby girl, and by baby girl I mean my 17 year old daughter, is scheduled for decompression August 19.
I would love words of wisdom from those that have been through the procedure themselves and any parents that have been through it with their children. I understand that no two people have the same experience. I've read the "what to take to surgery" discussions - which was extremely helpful. What I'm looking for might be out there as well and I just haven't found it yet and I apologize for asking the same question if that is the case.
What are things that you did that helped? Things that you did that hurt? Was there certain foods that you found easier to tolerate? Sleeping positions that helped or hurt?
I had decompression surgery this past April. My Mom was with me - at 26 I am still her little girl!
From my personal experience, I got very scared right before surgery and I was glad my Mom was there. I was told that I was out of it for a real long time after I got out of surgery - asking questions over and over, and things like that. The surgery went really well, it just took me a while to get rid of all the anesthesia drugs.
I learned that when they send you home from the hospital to make sure they are giving you the correct meds to go home with. This includes her pain meds AND any other meds, such as anti-nausea meds. My docs sent me home without any anti-nausea meds, assuming that what I had at home (which was a much lower dose of what I was getting in the hospital) would suffice. Not the case!
Also, I was SO happy that before surgery I got a handheld shower head and a plastic stool that fit in my tub. It made getting clean so much easier because I could just sit down and wash myself.
I hope that this helps, and I'll be thinking of your daughter on the 19th.
Hi! I am 20 years old and had my surgery at 19. I was also very nervous before the surgery, I was dehydrated and they kept delaying the surgery! UGH! Anyways, I was so glad to have my mom go back in with me. No matter how old you are you always need your mom!
A big one for me was the pain. Just make sure you keep her on a schedule for pain meds and muscle relaxers. Help her to remember and it is helpful at the beginning to get up even throughout the night every 4 hours to stay on top of the pain. The other important thing for me was stool softeners and fiber supplements. The pain medications made me very constipated. I would also recommend protein shakes (ensure) or something like that. I had many problems swallowing for the first 1-1.5 weeks and those made sure I still got all the nutrition and protein I needed. If you have an old plastic stool or something of that kind those are very helpful in the shower. She may need help washing/brushing/putting up her hair for a while. Other than that I found I was most comfortable in a recliner and slept best with a memory foam pillow. Good luck to both of you!
Oh and I forgot to say that being young helped me drastically! I only spent 1 night in the ICU and 1 in a regular room. Total I was only in the surgery for about 44 hours or so after my surgery was over!
SaraJane said:
Hi! I am 20 years old and had my surgery at 19. I was also very nervous before the surgery, I was dehydrated and they kept delaying the surgery! UGH! Anyways, I was so glad to have my mom go back in with me. No matter how old you are you always need your mom!
A big one for me was the pain. Just make sure you keep her on a schedule for pain meds and muscle relaxers. Help her to remember and it is helpful at the beginning to get up even throughout the night every 4 hours to stay on top of the pain. The other important thing for me was stool softeners and fiber supplements. The pain medications made me very constipated. I would also recommend protein shakes (ensure) or something like that. I had many problems swallowing for the first 1-1.5 weeks and those made sure I still got all the nutrition and protein I needed. If you have an old plastic stool or something of that kind those are very helpful in the shower. She may need help washing/brushing/putting up her hair for a while. Other than that I found I was most comfortable in a recliner and slept best with a memory foam pillow. Good luck to both of you!
My DD had surgery on June 11. She was 16 at the time of surgery (turned 17 on July 16).
Pain Medication:
The best advice I can give you is stay on top of her medications. DO NOT let her sleep all night without waking her to see where her pain is! We did that with DD and she did great during the day when they checked her more often and stayed on top of her pain medications but night was a different story. She ended up throwing up so much that it turned to blood because of it. She'd wake up with a pain level of 9 and then we were playing catch up to the pain all night long! Get off the morphine as soon as you can!
Peeing:
DD had a cath for 36 hours after surgery. She had a lot of problems with having the urge to go to the bathroom really bad but couldn't go. She stayed an extra day in the hospital because of it. The nurses actually used peppermint oil on a cotton ball (placed in the hat) to help her with going and yes it did help!
Clothes:
Abbey used the hospital gown for most of her stay in the hospital. She found comfort in sleeping in one of her dad's old tee-shirts. It was big enough that getting it over her head was not painful for her and I think it brought back feelings of comfort and safety from her childhood.
Stuffed Animal:
There were some (mostly friends/family) who thought that Abbey was being 'immature' to want to bring a stuffed animal with her. Abbey brought two stuffed animals, one of which went into the OR with her. We encouraged her to bring what would give her comfort.
Children's Hospital vs. Adult Hospital:
We pushed very hard for her to be at a Children's Hospital instead of a regular hospital. The bottom line is they are still children and need the extra comforts that are allowed children. It's the little things like not changing the IV every three days but instead waiting until it needs to be changed. One of Abbey's nurse told us 'in children's world we don't change the IV every three days no matter what, parents are allowed in ICU with the child 24/7, parents are encouraged to participate in caring for their child, parents are encouraged to advocate for their child, etc'.
Kindle/iPad:
For the first 36 hours Abbey could not tolerate any type of input (sight/sounds) of her Kindle or the T.V. The NS told us that it had to due with Abbey's brain adjusting to the surgery. We spent most of our time with very little light in her room and no T.V.
I'm 26 y/o and had my surgery 2 weeks ago. My advice while your daughter is in the hospital is to try to not have so many people come visit. I know too much noise or activity made me feel worse and my head hurt worse. Also if it's like mine when I was in ICU for the first night with a pain button that I could hit every 6 minutes. If she's sleeping hit the button for her cause when she wakes up she's going to hurt! Also keep on the nurses and other neurosurgeons that are on call that will be checking in on her. Have a list of approved meds that you are familiar with and keep up with it when they give it to her. In the hospital I was given the button the first night and morphine (I don't remember the button pain med, it started with an F). Also I got steroids and some other pain meds and antibiotics through IV. I went in Thursday and was out by Saturday. I see some of the other ladies who've commented on this had some nausea problems, I didn't so when I left the hospital I left with Hydrocodone, Valiums, steroids and Neosporin. I opted out for Oxycodone because it makes me sick, now thinking about it that could be why some other people needed nausea meds. :P Once home make sure you have stool softeners, baby shampoo, a comfy blanket, lots of pillows and ice packs. My husband always made sure I had my ice pack because even with the hydrocodone and valiums I was still in a good bit of pain. I also had an allergic reaction to the catheter so that only added to my suffering. I cried maybe once a day and it was usually at night or early in the morning because of the stiffness. I suggest to opt for baths instead of showers to begin with, they tell you not to soak but what I did was fill the tub up about 6 inches and bathe like that. I took two showers and nearly passed out during both of them, my husband had to come get me soaking wet, wrap me in a blanket and set me in the recliner. That's another thing, I found it more comfortable to sleep in the recliner than the bed. It was a lot more painful getting out of the bed! Make sure you have everything she needs within arms reach. My husband had a table set up next to me the whole time with water, snacks and my phone. Also don't let her overdo it by any means but she needs to get up and move around so she doesn't get so stiff, cause that is even worse. At first when you get up and try to walk around it's stiff and painful but you loosen up within a couple mins. The day after I came home I walked to the neighbors house to visit and to get out the house. One mistake I made was that a little under a week post op my friend took me out to lunch. It was too much going on, too much noise, too many people, too much movement and the two days after that were the most painful since I had been home from the hospital. I also saw someone else mentioned earplugs, I actually told my husband I wanted some of those noise cancelling headphones just to muffle the noises. My alternative was putting a pillow over my head. :P One more piece of advice, keep up with what meds she takes and when because she more than likely won't remember. I didn't. Good luck to you and her and I'm sure she will do great!!!!
Hi, I am 2 weeks post op and I must say that 1st week after at home was horrible. What helped me was staying on top of my pain with the correct pain meds. Making sure I slept at an incline on either my left or right side never on my back which put pressure in my head making the headaches worst. Also, I made sure that I did not sleep in the same position for too long because it will bring on the stiffness within your neck. I had memory foam pillows which were a life saver, goose down pillows work as well, anything soft really. I was only able to eat soft foods and really only wanted fruits and vegetables. Keeping my body cool helps me alot. Loud noises, sitting up for too long or walking a distance longer than from my room to the bathroom, bright lights, and not good. My restrictions are no driving, lifting anything heavier than a gallon of milk and no work until seen for my post op. Its been 2 weeks and I’m happy to say that I am doing great. The only thing that I see differently now after the surgery is having an itching feeling starting at my ankles into my feet and sometimes I forget to not lay or apply pressure to the back of my head. Once I got past the first week recovery starting progressing along rather smoothly. I wish both you and your daughter the best.
Thanks again for so much GREAT advice!! I hope that everyone continues to have wonderful recoveries!!
OhMy - my daughter and I watched the video together, it was a great to be able to see her progress!! As far as a stuffed animal, my daughter and I neither one think there is anything wrong with that. My daughter wants to bring one with her and she will be 18 in November!! Never to old to have favorite things with you, especially something soft that you can cuddle. I hope that your daughter is still doing good and continues on that path!
NRichardson - it's funny you say to keep visitors in the hospital to a minimum because I sort of offended & upset my family when I told my siblings and parents that I didn't want anyone up there. I told them she needs to focus on getting better and getting her pain under control, not worrying about entertaining visitors (she's very social and wants to make people happy so she would be focused on them and not her).