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SherryM
03-30-2009, 05:37 PM
Hi
My 15 year old son, John is having spinal fusion from T4-T12 with thoracoplasty. I am starting to stress myself out. I have not gotten him slippers and a robe (which were on the list from the hospital). I don't know what he really needs and dosen't.

We live in Iowa and his surgery is taking place at Gillette Children's Hospital in St. Paul Mn. He is a patient of Shriner's, but his surgeon prefers to do this procedure at Gillette. So, my disabled hubby is going to be staying at the PAC (parent accommodation center) at Shriner's and I will be staying with John at Gillette. I will have to drive back and forth between the two hospitals to transport my hubby.

I am worried about the car ride home...about 250 miles. Any tips or tricks to make this more comfortable for John would greatly be appreciated. I would appreciate any advice at all. John goes to school tomorrow and then is done for the year. He will have a homebound tutor when he is up for that.

Well, I am rambling, but like I said I am a stressed out wreck. Any words of advice?

Thanks for listening!
Sherry

Carmell
03-30-2009, 05:51 PM
Big hugs to you, Sherry. You have double the responsibility - hubby and John. Best wishes with them both. I wish you had someone (at least a few days) to help with hubby.

NON-SKID slippers are very important. If you don't bring anything else to the hospital, I'd bring non-skid slippers. When they get him up to walk, he will need as sturdy feet as possible. The hospital slippers have rubber bumps on them, and sometimes that works. Other times, patients don't like them because the bumps hurt their feet. Good footwear is vital, IMHO. The rob, not so important. If the hospital wants you to have one, AFTER you get there (and if they ask) tell them he doesn't have one. Period. They will likely give him another hospital gown to wear backwards (open in the front) as a rob. Not a big deal.

Also, see if you can talk to the Pain Services people BEFORE Thursday about what their plan is to keep him comfortable. Knowing ahead of time will hopefully prevent any breakthrough pain (which is AWFUL to play catchup with). Also, find out how they plan to keep his bowels "moving". Constipation can delay a good recovery - potentially painful.

I understand having the surgery at the Children's Hospital rather than Shriners. The nursing care will likely be more experienced in helping him at Gillette.

For the car ride home, tell the hospital you have a long road trip ahead. Make sure they help dose him up with good drugs before you leave, then have some on hand for during the trip. Stopping every hour may be necessary to stretch his legs (even if he doesn't stand up) and re-position himself. LOTS OF PILLOWS should help too.

We'll be sending our best your way. May the entire experience go smoothly for you, and for hubby, and for John.

Susie*Bee
03-30-2009, 06:24 PM
I'll be praying for your son and your whole situation. Every hospital is different, but I'll go ahead and mention how it was with me about some of your concerns.

When I had my surgery, I had about a 2+ hour drive home, so not nearly as long as yours. I was told we needed to stop half way and have me walk a little, to help prevent blood clots. Take plenty of pillows.

I took a robe and slippers to the hospital because they were on the list and never used either. They always just put another gown on me backwards, as Carmell mentioned. And I walked with the socks with rubber designs on the bottom that were hospital issue. I think you'll probably be fine. I'll be looking forward to hearing about how it all went, when John is on "the other side" of the surgery. Big hugs, Susie

Snoopy
03-30-2009, 06:47 PM
Sherry,

You've been given excellent advice.

When my daughter had her surgery, within a few days time, she was wearing her own clothes--pj or lounge pants and a t-shirt. And if John isn't feeling up to getting dressed, do like the others have suggested--wear two gowns.

Since John is a patient of Shriner's, is there any way one of their volunteers could transport your husband to the hospital for you?

While taking care of hubby and John, please remember to take care of yourself. Drink plenty of water, eat, and sleep whenever John sleeps. I'd also suggest taking a note pad and writing down John's meds. What he was given, what it was for, what time it was given and when he can have the next dose. It is very important that the pain doesn't get ahead of you. This is extremely important once he is on oral pain meds.

Hang in there. The surgery will be over before you know it!

Mary Lou

SherryM
03-30-2009, 08:48 PM
thank you all for your responses. I am calmed down some. I will get the slippers, and skip the robe. Money is getting tight. I might asked about a volunteer taking Joe to the hospital. I really hate asking for help. I will get a notebook and document everything. Thanks for the tip. I would never think of these things myself.

The surgeon called tonight and wanted to know if I would consent to using discarded ligaments from John's back for some research he is doing. He is comparing the ligaments in Scoliosis patients to those with other back issues. I consented to this, he said it would not hurt any more or extend the surgery.

Tomorrow, I pick up John from school and we clean out his locker. He will start homebound tutor on April 14, if everything goes as planned. His school year is over in mid May and is high school is extremely overcrowded, so he is not going back this year.

ok, I am back to rambling...I think I will make a list of stuff I should take north. Thanks again everyone.

I hope you and your loved ones all stay safe

Sherry

scoliboymom
03-30-2009, 09:54 PM
Sherry
I got my son crocs for the hospital and they were fabulous, easy to put on/take off and very stable. He practically lived in them for the first few weeks. We also skipped the robe. Pillows for the ride home a big must. Mary Lou's idea of a notepad/diary good idea too. I wrote in funny things that Patrick said to me during his stay (drug induced I am sure) and makes for a nice keepsake after the fact.
You/John will be on the other side before you know it. We'll be thinking of you

Ramona

Beckymk
04-01-2009, 01:38 PM
Hugs to you!!! I know you are going nuts (and probably either already in the hospital if they are having you go the night before or on your way!).

We bought a robe & never used it either.

Hang in there, soon you will be on the other side for recovery and I find that a lot less stressful.

SherryM
04-02-2009, 06:47 PM
He is on his 3rd hour of surgery right now. It was scheduled for noon but did start until 2:00....the waiting is terrible

laurieg6
04-02-2009, 07:31 PM
I hope the surgery goes very well. Your wait and a lot of the tension will soon be (mostly/somewhat) over! I wanted to mention that when Alexander was in the hospital, I had a little notebook in which I wrote everything down - Dr.'s, nurses, meds, times related to surgery and meds, any issue that came up that I wanted to make sure to remember and/or ask about; I kept writing throughout the hospital stay and then used it to help myself remember med doses and times after he was home. Alexander still likes to look at it.

I wish your son quick recovery after all he's been through.

Take care,

Rodsmom
04-02-2009, 08:21 PM
My daughter had surgery last year and we had a rough first three days in the hospital. Pain control was the problem. Not sure what went wrong but it was unpleasant. I wish you all the best in this stressful time. We had a two hour drive home but I had to stop for meds and a toilet seat...I was a wreck after four days of no sleep but I made sure that I did not mess up her meds schedule and she did good. She was pretty out of it but was glad to be going home and out of the hospital. They told me that I would probably have to pull over and get her out of the truck on the way home. She did not complain so I kept right on driving!

Beckymk
04-02-2009, 10:17 PM
HUGS Sherry!!!!

I know it's tough waiting!!! Did they start the actual surgery at 2:00 or all the pre-op stuff?

Carolyn went in at 7:30ish AM but they didn't make the first incision until 9 or 9:30 AM.

Hang in there!

Scoli62707
04-02-2009, 10:28 PM
I know now you are probobly in ICU but I admit the hospital stay isn't fun but you'll all pull through it just hang in there best wishes! :)

JenniferG
04-02-2009, 11:22 PM
This is the hard time for you but this day will soon be over and soon your boy will be on his way to recovery. You have much on your plate right now, so I hope you get good news very soon.

Jen

SherryM
04-03-2009, 04:15 PM
John is in PICU. The surgery started at 2:30 and ended about 7. He got to PICU at around 10 pm. What a long day. They tried to make him stand around 1030 this am to mold his brace...imagine that he couldn't tolerate the pain. I tried to tell them that but I am just a mom and don't know anything. Now they have to wait until Monday to mold the brace. I know they want him mobile, but 12 hours after he gets out of recovery is pushing it too much.

He had basically slept since they tried to stand him. Wore him out completely. Doc is suppose to come in between 3 and 4, so we will see what he says

Sherry

Snoopy
04-03-2009, 04:42 PM
What a long day. They tried to make him stand around 1030 this am to mold his brace...imagine that he couldn't tolerate the pain. I tried to tell them that but I am just a mom and don't know anything. Sherry


Welcome to the other side! The waiting is always hard, but it is behind you now.

Why would anyone try to mold him for a brace within 12 hours or so after leaving recovery? That's so dumb! I'm glad you tried to speak up. Keep speaking up whenever you feel the need. You are the MOM and you know your son best. Don't worry about hurting anyone's feelings. Your job is to look out for your son and do what you feel is best for him.

Remember to take care of yourself.

Mary Lou

SherryM
04-03-2009, 08:09 PM
Thanks, speaking up is very hard for me, but I will do it for John. Now they are going mold the brace on Monday...now I approve

WNCmom
04-03-2009, 08:27 PM
Somehow I missed John's surgery until today. My son was fused 5 months ago. I agree about the robe/gown issue and the rubber dot-soled socks worked great for him.

One thing I wish I had known is that swelling is normal and can last quite awhile--facial, ankle, and genital (which can be a little alarming in boys). John will sleep a lot these first few days. You'll be surprised at how quickly he will begin to improve, though.

We had a 9-hour travel day (plane and car) on the day we went home, and Sidney tolerated it well. Make sure you get the prescription of pain meds filled before you leave for home.

Hang in there and don't forget to eat, drink, and try to get enough sleep. I know that will be a trick with John and your husband to look after, but you can't be there for them if you're not there for yourself.

Keep us posted!

Mary Ellen

Rodsmom
04-03-2009, 08:51 PM
My daughter was in her room by 5:00pm or so after surgery. They had her up midday or so the next day. It was pure torture watching physical therapy. No brace though for her after surgery. She had no pain control so physical therapy was bad. I did go against medical advice a couple of times. Doctor wanted the cathater out and I refused. She could not get to the bathroom yet. I have learned from others that have had children or adults in the hospital that sometimes you do have to speak up. My thoughts are with you. :)

Rodsmom
04-03-2009, 08:53 PM
Note on the swelling issue...yah my girl was puffy in the face and body for a while.

Beckymk
04-04-2009, 09:22 AM
I know it will still be a very long next few days/weeks for you and as I was warned with Carolyn by the nurses...be prepared for them to be downright nasty mood and they take it out on their moms. It does get better.

Make sure for the pain meds they EAT. I forget the first meds Carolyn was on but it would make her so dizzy. Then come to find out it was probably since she wasn't eating very well, so was basically taking it on an empty stomach which you aren't supposed to do. I didn't know this until AFTER we switched meds to the Tylenol 3 (but that worked for us). Carolyn is a picky eater to start with so hospital food was nearly impossible to get her to eat in general. We were allowed to bring our own food in but getting her to eat anything was a challenge, she just wanted to sleep.