What to expect while at hospital for surgery

[Fingers Crossed]

Aw, the memories!

My daughter wasn't crabby, per se, but she did have a day in the hospital when she was really down and crying (very unusual behavior for her; she is pretty stoic) about "why did we do this, it can't be undone" etc., etc. I posted here that night, I became so distraught about it.

She couldn't produce a BM (no distended stomach, though) and had to have an enema on day 5 at the hospital. She was absolutely mortified about it, and asked the nurse if she could refuse the enema as she believed it was a violation of her rights! Thank God for pediatric nurses who also sometimes double as adolescent psychologists, as she somehow convinced my daughter that it would all be fine.

I think all the narcotics are definitely a culprit in all this -- the changes in personality and of course the problems with digestion/bms.

We noticed that "turning of the corner" in just a few weeks and it did coincide with the weaning off narcotics. Of course anyone who goes through this major surgery needs the narcotics, but it is also a relief to not need them anymore.

Good job Gryffindor! You are a great mom and advocate for Cheyenne, and that is just what she needs now!

[Gryffindor]

Going through this with two kids, I have come to learn that sometimes there is just no right answer or I am incapabe of finding it - one or the other. While this was certainly an issue in the hospital, I would say it crescendoed after they left the hospital and higher drug dosages for home and the lower drug dosages.

The important thing is to never show fear and hold your ground.

I've got two kids right now. One is Cheyenne. The other is my hubby. Both are driving me insane!!!!!

I hear you about the answer thing. She's doing the "opposite" thing right now with me. She'll ask for something and if I don't jump then she suddenly doesn't want it.

After reading how you said this actually will get worse, I think my night is now shot. lol.

I'm fortunate that every time that I get frustrated that I can call my mom and she patiently lets me vent to her without rendering judgment.

I've decided that Chey is pushing our boundaries to see what she can get away with and that I'm putting an end to it now. I know she feels horrible but if I don't start putting the brakes on this it's going to get worse. I do feel I'm entitled to tell her "no" when it's something frivilous. (for example, she wanted the tv off because it was making "too much noise". She just spent the past few nights in an overcrowded CCU that was 10x louder than the softest setting on the TV. When I go back up to the room the tv goes back on).

DID they get her up walking? how did that go? Is her fever gone?

Yes, this morning they had her walk across the CCU. She did well. The fever is back but it's much lower than it was before.

Her tummy was very distended too, looked like she was 6 months pregnant. They never did an enema but tried to give her a liquid laxative that she promptly threw up which caused her to wrench her back.

Concerning the school, several weeks after we were home, I received a truancy notice from the school's police dept. I was so upset, after all the notifications and meetings, I couldn't believe they still had marked her absent. I cleared it up quickly but you just have to wonder

Chey's tummy looked exactly the same. In fact when I was speaking with one of her Dr's about it I used that exact same terminology. lol. The Dr's said she looked more like she was only 3 months along.

The enema worked great. They took an x-ray earlier today to rule out any other complications as she was having very sharp pains in her stomach. The x-ray showed that her bowels were full.

According to her nurse she got a lot of it out. They had been giving her stool softener ever since she got out of surgery so that definitely helped too.

You'd think after being that uncomfortable that she'd say she felt better. Nope. I KNOW she has to feel better but is doing that "opposite" thing. Arrrrggghhh!

About school: After telling my mom about their call she actually called the school herself and read them the riot act. My mom is 80 and gets rather worked up when anyone messes with her kids or grandkids.

I was hoping for a return call from either the school psychologist or my daughter's guidance counselor after leaving a message for them but didn't get one yet.

[Sherie]

I guess your doctor has never been pregnant then, you're hardly showing at 3 months. I'm glad the enema worked, I can't imagine how miserable that must be.

Hope Chey and you have a better day. You just have to take it one day at a time.

[Gryffindor]

Last night was by far the worst yet. Hubby went back down to RMD for the night. At 11 Chey & I went to sleep. She was up every 30 min complaining of pain. Then she was complaining that I wasn't waking up fast enough.

She REFUSED to hit any of the 3 nurse buttons on her bed that are easily within her reach. She wanted me to do all of the talking.

By 2:30 after going through this for several hours I finally gave up, got up and got a big cup of coffee and called her dad just to let off some steam.

He shows up around 3:30 and then starts arguing with me about why he's up there, even though I told him to stay put. He then wants me to try to catch a cab at 3:30 in the morning to go to RMD. I said I was staying put, but if he could watch her and let me sleep that would be great. It seems like as soon as both of us were in the room with her that she calmed down. She can't play the "he said", "she said" game when we're both there at the same time.

She's having a lot of pain in her right shoulder. This is the shoulder where the muscle would have been shorter due to balance correction. Her pre-op photos clearly show the left shoulderblade as being higher and sticking out much more than the right. I'm thinking it's because that muscle has more tension on it is why she's feeling more pain in that area. She's having similar pain in her hips (likely for the same reason).

The night before last she was complaining of her urinary catheter burning. Last night she was complaining of feeling like she had to go but couldn't. If that were me I'd know I had a urinary tract infection. They removed the catheter this morning and took a sample for the lab to look at. They have to wait for a Dr. to sign off on it first though.

They've cancelled all PT and have her on strict bed rest at this point. They're going to be sending in a pain management specialist to work with her today to find out what's going on. The only conradication to this is that they removed her urinary catheter so she's going to HAVE to get out of bed to use the bathroom. She hates the bed pan as it really hurts her lower back.

She's starting to shut down to the staff now and not reply to their questions.

I'm at the point of asking for a psychologist/psychiatrist to come in and speak with her.

As for me, I'm falling apart. I have allergies and they kicked in pretty bad last night but I couldn't take my meds because they typically make me pretty drowsy. My on again, off again eczema is going into full swing due to the stress and all of the hand sanitizer. My skin absolutely hates alcohol and will react every time it comes in contact with it. I didn't eat lunch nor dinner yesterday because my stomach has been acting up since we arrived here. And, I just colored my hair right before we left and I already have a ton of grey showing. I feel 80 but I'm only 43.

To add to my stress, ever since our arrival last Sunday we've had:
1. A freak dust storm that knocked out power for over 6 hours.
2. The AC went out in our area of the hospital and it's been in the mid to high 90's here. I went to bed with shorts, a tank top, my hair wet and a wet washcloth on my forehead. I woke up at 3 a frozen popsicle as the AC had come back on.
3. Last night, right after they gave Chey her enema, (and she kicked me out of the room), the fire alarm went off. I was on my cell with my older daughter and she was freaking out on me asking what was going on. Turns out their fire protection company was testing everything but forgot to tell anyone.

Our departure date may change. The staff has gone from saying "when you leave on Tuesday" to "IF you leave on Tuesday".

If they sent us home now I don't know how I'd handle her. I don't know the proper way to rotate her or to get her out of bed. If this continues to stay this bad I'm going to need a home nurse to help because there's no way I could do this on my own.

Thanks for putting up with my venting guys.

[Fingers Crossed]

Oh, I am so sorry about all this. Wanted to share that my daughter had a very rough day in the hospital at day 4. She also had what appeared to be a UTI, but was not(sample tested negative.) Apparently, the catheter caused some irritation that made her feel like she needed to go to the bathroom really often.

And all that getting up to go to the bathroom made her sore, I think, and she also complained of very localized, intense pain (her right shoulder). She was also very vocal about not wanting too much noise . . .

I think the valium helped most, as this intense pain was perhaps muscle spasm pain, or at least the nurses thought this was what was going on. I hope the pain management specialist is able to help her work through this!

Guess I don't have any great words of wisdom, but I think you will be amazed at how much better things will get in a very short time.

[Pooka1]

Thanks for putting up with my venting guys.

Hey! Don't worry about this. These posts hopefully not only help you but will help others who come along later.

I am very sorry you are having it so rough. This is a tough road but luckily it usually isn't a long one. The pain issue is most concerning because getting and keeping the pain under control is really the game at this point and into the future. The times the pain got away from us were the very low points. But I think kids are so zonked that they really don't remember... to hear my one kid talk, it wasn't really a big deal. But I was there and it was a big deal... she just doesn't remember. And I wish I could forget. The other kid remembers but was saying it was worth it before she left the hospital. Of course she went from highly rotated to almost no rotation so I can understand her sentiment.

You have to be kind to yourself. You have to stand your ground so that you can get through this and still be in a position to help her. This is a huge thing and kids have to process it. They are going to lash out in response to both the pain and just the situation in general. Keep your eyes on the prize. That's my advice for what it is worth.

[Sherie]

Sorry to hear about the rough time, but it's probably not that unusual (minus the dust storms, power outages and fire alarms, that's unbelievable!) Sheena had a very difficult time in the hospital. You really have to take it one day, one hour, one moment at a time. Some days may be worse than the one before but it will eventually get better. It seems like everyone has some kind of difficulties.

You also have to keep in mind that the narcotics are affecting Chey's judgement and emotional state. Sheena wasn't herself either. In fact, she took herself off the narcotics because she hated the way they made her feel.

The shoulder pains may linger for a while, it seems to be pretty common on this forum. Sheena also had this shoulder pain off and on the first year for no apparent reason. She also had pain in her hip but it's where the drainage tubes came out, they think she had a hematoma at the site that aggravated a nerve. I think you said Chey would not have drainage tubes, it's probably exactly what you're saying.

Just hang in there, it will get better. For us, just being home and out of the hospital was very good medicine. I was a little scared to be home and a 2 hour flight away from the hospital and doctor but it was so much better.

[CamsMomKelly]

I hope things are going better for all of you. .. how is recovery going?

[Chris43]

Hope things are better!

Hi Gryffindor,
I've been following your posts. I wish things were going easier for you and your daughter. I've been thinking of you each day and keeping you in my prayers. I hope she will be better soon. Hang in there!
Chris

[Gryffindor]

Hey everyone!

Things are still kinda rough. I was ready to jump on a plane this morning due to Chey's and hubby's attitudes. She got very bent out of shape when her surgeon said he would not write her a PE excuse for the remainder of school and decided that it was my fault. It went downhill from there.

As I was sitting in the parent room, (which has been a godsend), contemplating actually booking a flight, I received a call from my boss, who is also one of my best friends. His 4 mo old granddaughter passed away from SIDS last night. That pretty much put things back into focus for me.

The urinary catheter had to go back in because she could not pass any urine. She also has not had another bowel movement since the enema.

They were a little concerned because there was blood in her urine. After getting her lab results back, there's no infection and they're saying the blood is normal and should go away.

The Valium does seem to be working the best against her pain.

The nurses gave her a shower this evening and removed her bandage from her back. All that's left is the surgical tape that's holding the incision closed. Surprisingly, it doesn't look too terribly bad. The incision is shorter and thinner than I would have guessed.

Hopefully tomorrow we'll get back on track.

I'm still very worried about going home. I asked her surgeon this morning if their discharge criteria included: 1. Being able to use the bathroom on her own (both urine and bowel movements). 2. Being able to roll over on her own. 3. Being able to regulate her oxygen level (if she takes off the oxygen her oxygen level drops down into the mid/high 80's). 4. Being able to walk on her own. He answered "yes".

We're only 2.25 days from leaving (we leave mid-morning on Tuesday). That's a lot to accomplish in a very short time.

We have to give up the parent room by 10 a.m. tomorrow morning for another family to use so I'll be back to the torture chair tomorrow or RMD. RMD is ok but it has problems. Someone stole their cable box off the building so there's no tv and then someone stole the computer they had for parents to use. After hearing all of that I feel much safer staying at the hospital than there by myself. Not that their generosity isn't appreciated, because it most definitely is.

Well, I'm off to get some much needed rest. Hopefully I'll have some good news to post tomorrow about her progress.

Question: For those of you that flew to somewhere else for your child's surgery, did you obtain a note from your child's Dr. to provide to the airline so you could get a wheelchair and early boarding? When I asked chey's Dr. about this he looked like no one had asked for this before.

[Sherie]

We didn't get a note from the doctor, we simply called the airline ahead of time and requested a wheelchair. We took a van taxi to the airport and they brought the wheelchair out to the curb. The hospital allowed us to take a pillow for the trip. Being in a wheelchair will automatically put you first in line for boarding. Believe it or not, they still had to wand her in the wheelchair.

I was afraid to be at home too but it was much better than I expected. Sheena started eating and was much more relaxed. It wasn't easy, many people have already told you it's like having a newborn but you will quickly learn how to take care of things. I started practicing helping her in and out of the bed and toilet in the hospital. Ask the physical therapist to teach you. I don't recall rolling over as being a discharge criteria because I was still helping her the first week home. Walking is not much more than a few steps up and down. In general, the hospital will also want to discharge her so the criteria to leave is not as cut and dry as it seems. Sheena stayed an extra day (8 days total) because of some problems switching meds but the bowel movement was hardly more than a smudge. Sheena literally had nothing in her system to pass, has Chey been eating?

[Pooka1]

Things are still kinda rough. I was ready to jump on a plane this morning due to Chey's and hubby's attitudes. She got very bent out of shape when her surgeon said he would not write her a PE excuse for the remainder of school and decided that it was my fault. It went downhill from there.

Hang in there!

In my opinion, there was zero chance he would have written that note and your daughter should understand why the surgeon refused. That's why I asked you to please post about how that goes down.

The point of this surgery is to return these kids to a normal life in short order. After any restriction period, they are usually allowed to do everything except things like bungee jumping. Because of the ability of the new instrumentation to enable fusion, our surgeon said that 95% of kids need no physical restrictions even right after surgery. Five percent need the restriction to get a fusion but they don't know ahead of time who they are so they restrict everyone. Some experienced surgeons don't restrict kids at all at any point and play the 95% odds. Writing a note excusing her from PE after 8 months or a year restriction period is not consistent at all with all that.

I'm still very worried about going home. I asked her surgeon this morning if their discharge criteria included: 1. Being able to use the bathroom on her own (both urine and bowel movements). 2. Being able to roll over on her own. 3. Being able to regulate her oxygen level (if she takes off the oxygen her oxygen level drops down into the mid/high 80's). 4. Being able to walk on her own. He answered "yes".

The discharge requirements for my kids were the following as I remember:

1. stairs (which obviously includes walking)
2. use the bathroom (not requiring a bowel movement)

I doubt they will discharge Chey if she needs O2 but they might. I have no idea.

[ddb]

Can't answer about the plane ride - we drove. Hospital was an hour from home, but I took it really easy so not to jar her. The drive was very non eventful . Remember to try to plan out your pain med administration for your trip to keep her comfortable.

DD did not have a BM in the hospital - Dr said it could take days once home. Finally happened on the third day at home. She did not have any distress with this - did not eat much solids in the hospital.

Pt should show you how to help Chey move. That was a discharge criteria - we had to be able to help her out of bed, and to the bathroom. Steps were also in their agenda - it's to make sure she knew how to stay safe during her recovery.

I hope all is getting better. Pain, the meds for pain and the warn out - tiredness all you guys have been through can put all on edge. I would say to myself - this will get better, and try to let everything slide. It helped to keep it all calm even tho inside I was screaming at times.

Kids tend to lash out at the ones they love when things are out of their control - one day soon she will thank you for all you've done for her during this time. It's not easy going through this, but when that happens it will replace this feeling with such a warmth.

Sending healing thoughts your way.

Dee

[Fingers Crossed]

I really hope all is a little better in SLC today. Have been thinking about all of you. This is a really rough surgery, no doubt, and it is hard on the whole family.

Hang in there Gryffindor, it really will get better. Once she is better able to move around, I think, the activity will probably help her.

Have you been able to have her hair washed? Those little things really made all the difference while my daughter was in the hospital. Our hospital had a beautician's sink, and one kind aide washed her hair (by leaning her back in a wheelchair that had a back that tilted) and I was amazed at how that perked her up.

[Pooka1]

Have you been able to have her hair washed? Those little things really made all the difference while my daughter was in the hospital. Our hospital had a beautician's sink, and one kind aide washed her hair (by leaning her back in a wheelchair that had a back that tilted) and I was amazed at how that perked her up.

Completely agree with this! Exactly so for both my kids.