Accomodations for Home

[TX Mom]

Thanks for the advice on the teddy bear. Allie loves stuffed animals and I'm going to encourage her to bring one...she has so many on her bed, I wonder which one she'll choose!

I have been trying to be extra strong for Allie. I only cry when she is not around. I am praying for strength. Thanks for taking the time to write...it really helps!

Teri

[paulasue2]

Just wanted to add a comment about our experience with stairs - part of what my daughter had to be able to do with the hospital physical therapist before she would be allowed to leave the hospital, was walk up and down stairs. This she did on about the 5th or 6th day. Her bedroom is upstairs in our house, and she slept there and came up and downstairs (slowly!) from the time she came home. We put a soft rocking chair with a high back in her room and this seemed to work as a place for her to be upright - she could lean back a little bit and had good head and back support. She did do the pre-op tour - did not want to do it at first, but told me later that she was glad that she had gone. The people conducting the tour were patient advocates, and the leader gave us some good pointers about little things that were useful during her hospital stay. I know what 'mumof 5' means about the snappiness - I lost my temper a time or two and felt terrible about it - but you are the one that will probably be on the receiving end of some serious grumpiness and sometimes you just have to say "enough." I had a sort of speech prepared for when my daughter left for surgery so I wouldn't get all "tang-tungled", but we ended up having to wait two hours for the doctor to get there (he had a morning surgery that went long) and when he finally showed up, there was this huge flurry of activity of nurses, anaesthesiologist, doctors, etc., that kept us sort of on the sidelines, and then suddenly it was time to go. We both kissed her and told her we would see her shortly in the wake-up room. The doctor sent messages to us in the waiting room throughout the surgery telling us her status and estimated time remaining, so that helped enormously with the wait. I think I read a book, but honestly, I may have just stared at it for hours. She didn't want us to take any pictures at all, and tells me now that she can barely remember any of it.

[Alison]

I think this might have been said before, one thing which I would highly suggest taking to the hospital is a camera (even if Allie protests or says she doesn't want any pictures). I actually made mum bring a camera (she thought I was loopy), (I wanted to know what I looked like when I was asleep) but she took a picture before surgery (of my back and the electrodes on my head), and then when I was in High Dependancy Unit, she took some pictures of me "drugged out"/asleep and then a couple when the scar was exposed for the first time, and getting up for the first time. The ones that happened in high dependency unit were the ones that I was grateful for the most later, because I have very little recollection of being in there and of course when I was asleep. Even if Allie doesn't want to look at them straight away, she will probably want to look at them sometime along the line. Also measure Allie's height before surgery, and then after surgery (it is interesting to see the difference in height that you usually get)

Alison

PS nursing staff are pretty accomadating, Mum checked beforehand and as long as she didn't use flash in high dependency unit they had no problem

[TX Mom]

Great suggestion. I have been thinking about taking a camera because I think she'd want to know. I appreciate your comments.

[bone]

Hi-
What exactly is posterior surgery? and wont she be in a cast when she comes home?

How long will she spend in the hospital?

bone in detroit

[spincon58]

Hi bone,

Posterior surgery is when the surgeon makes an incision only from the back....and for casting...its a doctors preference...

[TX Mom]

Posterior surgery is an incision from the back side. This is a more common approach for patients with flexible thoracic curves.

My daughter's surgeon does not cast nor brace after surgery. She'll probably be in the hospital 6-7 days.

Teri

[pcdoty]

Tx. Mom

I would recommend a hospitial bed, a raised toilet seat. My son had a rupture disc at the t8 and t9 , Had to remove a rib and use for fusion. I pretty much did everything for him for two weeks. Getting up and down was very difficult. things improved after the chest tube was removed. The Dr. told me surgery was similar to scoloisis so I check back here to see how people are healing etc.
I would recommend buying baby wipes, hand held shower head.

[Alison]

Hi Pcdoty

I'm not sure what a ruptured disc is but it sounds serious. Your doctor may have been saying that the actual surgery that your son had is similar to a spinal fusion but not necessarilly the aftercare I thought I might explain a bit more wha tit is like after a spinal fusion ( I am fused from T2 to T11). When you are in hospital after surgery you are immobile for the first few days, have a cathether in place and are basically unable to do anything for yourself. By about the third day/ fourth day they sit us up for the first time. Then the next day we are standing, then begin to walk. When we go home we are not able to lift anything, twist etc, but are able to walk fairly normally and do most personal care things. A lot of people buy a shower hose thingy for the shower, because you tend to have showers at the start sitting down. Someone often helps you with the shower at first (it is hard to reach your back, sore to lift your hands up above your head etc). Gradually things improve and you are back to having normal showers again, and then gradually over time able to do more stuff such as carry more and over time more sporting activites etc. Hope this sheds a bit of light for you (even though it is very brief)

Alison

[pcdoty]

Yes, I know my son had a fusion, I know that your fuision is a bit different. My son, had a cathatar, a chest tube. They had to cut him near the spine he has an 18in scar. They had to remove his rib, cut his aorta, and put him on a heart and lung machine for 6 1/2 hours to do the surgery. It was quite extensive. I also, have a nephew who just had the same kind of fuision as most of the people posting here. I know they are not the same but similar healing. So, it helps me as a mom to read about the different stages etc. and the healing as people are recovering. I often offer up a prayer as I read when one is about to have their surgery. We all often have the same fears. The doctor told me the recovery is similar to a scolois patient. my best to you.