Chris' surgery

[LorDon]

Hi everybody,
Chris came home on Monday and it is so good to be home and back in our own beds! We are all emotionally and physically exhausted. I must admit, it was the worst week of our lives and I'll never forget it. Chris was in surgery for 8 hours. We said goodbye to him at 7:45 am and didn't get to see him again until 6 pm and we were finally in a room at 8:30 pm. It was a long and very stressful day. I thought about all of you a lot during that day and thinking about all of the younger kids who went through this and did ok gave me strength.

Thankfully, the surgery went very smooth with no spinal cord issues. The highest his pain got was a 7. Most of the time his pain hovered around a 4 or 5. I thought the pain management team did a fantastic job keeping him comfortable. At the beginning of his surgery, they gave him methadone which really helped with his pain. It was only when that began to wear off the next morning that his pain hit a 7. They did increase his morphine at that point which of course, made him nauseous and itchy. More drugs to counteract those side effects. They eventually switched him to Dilaudin (sp?) which is less likely to cause nausea. It did seem to help. He did have a lot of problems with nausea just about the entire time though. We also had some rapid heart rate scares which combined with low oxygen levels and fluid buildup resulted in him needing a CAT scan of his heart and lungs to rule out a pulmonary embolism. As you can all imagine, that was devastating to hear. All I could do was sit by his bed, holding his hand while he slept, crying my eyes out. That was the scariest thing we ever had to go through during the entire week. Thankfully, after many prayers, we got the best news of our lives. The test came back normal. The surgeon apologized for having to put him through that, but he felt that there were too many things pointing in that direction and that we needed to rule it out. I respected his decision. I think that the CAT scan episode was the worst for Chris. They needed to transfer him to a gurney which made him vomit and the bumpy ride was very painful. Then they needed to transfer him again to the table for the scan and again, he was in agony. Combine that with i.v. issues and not enough pain meds., it was horrible for him. My heart was broke in a million pieces at that point.

Naturally, after he went through all of that, he began to release the fluid and his heart rate came down and his oxygen levels came up and the swelling went down. Doesn't it figure? They told me that it takes boys longer than girls to begin to release all of that fluid.

I know that needing a CAT scan is not a typical thing to happen and as I said before, I believe that part was the worst for Chris. Had it not been for all of that, I think that all things considered, it would have been bearable. He was so brave and handled the pain very well during the entire time and I couldn't be prouder of him. This young man of mine is my hero.

Big hugs,

[Singer]

Lori,

So glad Chris is okay. When I read posts like this, it makes me so thankful that I had the surgery and not my daughter. I'd much rather be in pain that watch my child be in pain. Can't imagine how scary the CT scan episode must have been.

Get some rest and best wishes for Chris's smooth recovery.

[txmarinemom]

Aw, Lori ... I hate that y'all had such a rough time.

I think it's just natural as a Mom to feel your kiddo's (and I don't care if they're 17 or 20 - living at home, or in the military - they're always your kiddo ;-) pain (physical, emotional or otherwise) even more acutely than if it were your own :(.

And it definitely blows to feel so helpless.

That said, you're home safely - and high five to both you and Chris ... you're on the other side!!!

You've two have been on my mind many, *many* times this last week, and it's wonderful to hear it was a successful journey overall (despite the rocky patches).

There is, I think, nothing in this life more wonderful than coming home to your own bed; may all the comforts of home ease your painful memories and fortify your souls.

Your new lives have begun, and you're BOTH my heroes today!

Best regards,
Pam

[scoliboymom]

Hi Lori
So glad to see you're back and glad you are all home again. And sorry to hear about Chris's problems and all the pain associated with the CAT scan. When Patrick was in the hospital his biggest crisis with pain had to do with cathetar problems where his pain escaladed to 10 and lastest there for several hours. Long story!! But made everything else seem trivial. It's always the things you least expect to give problems.
Take care, it won't be long till he's back to his old self again.
Ramona

[vndy]

Lori,

I've been thinking of you, and I'm glad to hear that, all in all, things went well. Chris' ordeal with the CT scan reminds me of mine with xrays (they tried to take me the day after surgery, and the bumpy ride on the gurney, plus the transfers to and from the xray table resulted in my throwing up when I returned to my room... see my day by day post for a good story...). I am also on Dilaudid, like Chris, since I have stomach problems. It has been okay on my stomach, but has made me a bit itchy. There's is a great anti-itch spray lotion by eucerin that helps a lot.

I promise things will get better and better. You and Chris will see and feel improvement day by day.

I'm thinking of you both. Congratulations, welcome to "the other side!"

[Carmell]

Big hugs to you, Lori and Chris. I'm proud of you both for making it through a very traumatic week. Did they offer to give Chris anti-nausea medicine? Braydon has a track record for being nauseated, so they give him 3 diff meds immediately after surgery to help keep the nausea to a minimum. I hope Chris is better with his nausea now.

Chris may still have some good steps forward, and a few steps back. This is fairly normal for so soon after surgery. Remember that it will get better. I've seen that after scoliosis surgery many teens "turn that corner" around the 3 week post-op time. Hopefully this is true for Chris.

Is his pain well-controlled at home? Is he having problems with constipation (I know, not a subject teenagers like to talk about, but its a real issue)? Continued thoughts and well wishes to Chris for a smooth and very successful recovery.

[MATJESNIC]

Lori,

Welcome home!!! Chris did so well and you have every reason to be so proud of him. I am so happy that the worst is behind you and you can look forward to a Merry Christmas and a New Year without surgery hanging over your head.

[mariaf]

Lori,

Your post brought tears to my eyes. I can deal with just about anything EXCEPT seeing one of my kids in any sort of pain (my oldest will be 20 and I agree that it does not matter how old they are - I'd still rather have ten times the pain than to see any of my kids suffer at all). So, my heart went out to you when you described feeling so helpless.

That being said, WELCOME HOME!!! Hopefully it will be pretty smooth sailing now, with Chris getting a little better and stronger each day.

Big Hugs to you both,

[emma12]

Glad to hear that everything went fairly well, and that you are on "the other side". I can't imagine how you felt when the word "embolism" was suggested. My daughter also had a few scares with breathing and fluid retention, luckily, she responded to the lasix (I think that was what they gave her), and we didn't go through any further scares. Sounds like the pain management went well for Chris, too. It does seem like its the little things that you didn't worry about that cause the biggest scares. I also know the feeling of comfort that finally being home brings. And, I hope things continue to get better for Chris, take one day at a time. It is amazing how quickly they turn the road to recovery. Hope you all have a Merry Christmas!

[laurieg6]

It's great to finally hear that you're all back home & that Chris is okay. It sounds like a traumatic time & I know what it's like to sit by the bed crying. Getting the post-op x-rays was the hardest for Alexander but now he doesn't remember it at all. He also had a lot of nausea & had to take the anti-nausea meds quite a bit in the hospital. Once we got home, he only needed them one time.

I hope Chris's pain is well controlled now that he is home. You must be relieved in so many ways. It will all keep getting easier to deal with as time goes on - esp. after the first week or two (or three).

Happy Holidays,

[sccrm08]

It makes me mad that they put people through unnecessary moves like that. After I was home from the hospital for a week and went back to the ER, i had to have a CT scan and told them there was no way they were moving me from one bed to another. I was told not to worry I was on a "Hover Mat" and I would not feel a thing. They were right. They fill it up with air and one person was able to move me from one bed to the next with one hand...I was totaly amazed and I never felt anything.

[rtremb]

Lori:

So glad to hear you are home again. Chris' story brought tears to my eyes - it is enough to have this surgery without the added complication of a possible pulmonary embolism and being moved for the CT scan.

I am thinking of you both often and pray for a speedy recovery. Hope you both have a Merry Christmas and a Happy New Year - you deserve it.

Ruth

[flowerpower]

Hi Lori,

Glad to hear that Chris's surgery went well for the most part...you had some scary moments there...I feel for Chris, having to be moved around like he was for the CT scan. Joe had to have a chest x-ray when he started experiencing sharp pains in the area near his heart and I know how excruciating it was for him to have to be wheeled and moved around like that. That was interesting what you said about boys releasing fluids later than girls b/c Joe had some issues with swelling/fluid build-up also. I hope some of what you learned here helped prepare you some but it's hard b/c as much as you do learn on this forum, there are still so many variations in the post-surgery phase with how the kids handle meds, other complications, etc.

Take it easy, enjoy the holidays & being with your son and his new, straight back! Recovery takes time, but remember that one day this will all be a distant memory :)

Take care,
Renee

[rosem]

Lori,

Happy to hear the good news. Feels good to be home doesn't it? Sorry you had the scare with his heart but happy to hear it was OK. These kids are sooo strong. They're my heroes too!

Merry Christmas!
Rose

[LorDon]

Hi everybody,
Thanks so much for your kind words and well wishes. It's feels absolutely wonderful to finally be on the other side of this surgery. I feel like I belong to an exclusive club now - the other side club!! The initiation was tough but we made it!! Chris continues to improve each day and that warms my heart. I feel like I can finally be happy again and it's such a good feeling. The black cloud that hung over my head has been replaced with sunshine!

His pain is well controlled at this point. He is on Oxycodone and Tylenol every 4 hours. He was also sent home with Valium, but he has only needed 2 of them so far. You are all right about the little things that are unexpected in the post-op phase. I felt like I was well prepared to deal with many of the things that came along until the heart issues arose. I think this surgery can be compared to childbirth. Everybody has a different experience but the end result is still the same. It's hard to fully understand it until you have actually been through it.

Carmell,
Constipation isn't an issue any more. The big event happened on Wednesday. He would have a fit if he knew I was discussing bm's with everybody in the world! Although, at this point, I think after that hospital stay, all his modesty went right out the window. I think it all started with his 24 year old pretty nurse checking his catheter because it was a little twisted. As soon as she lifted the blanket, his heart rate shot up really high and she asked him if he was ok. He mumbled something about just being in some pain from moving. Talk about mortifying!! Poor kid!! His father hasn't let him forget that one.

Pam,
I know your son is a Marine and you must be incredibly proud of him. Please thank him for me for serving our country. My husband is also in the military and is currently on active duty for the Army for the second time. Thankfully, he is stationed about 45 minutes away.

Thanks again for your continued support and prayers. You ladies are the best!

Big hugs to all of you,

[MATJESNIC]

Lori,

It was so great to read your post. I am so happy you are feeling so positive and happy now. I am sure it is more difficult for a teenage boy with all of those nurses.

Nicole is a very modest, private person. She would never undress in front of me (part of the reason I never knew her back was bad) but in the hospital and right afterwards when I would help her shower, she had no modesty whatsover. I couldn't believe the change. Well, I am happy to report she is back to her modest self, "Get out, Mom." etc. I thought she had changed for good.

I am so glad you are now on this side of it, counting the days, weeks and months until one year passes.

I am happy to report that tomorrow is Nicole's 100 days post-op, but who's counting?!!!

[flowerpower]

Lori,

I can relate to Chris's experience with nurses...Joe had to be "recathed" at one point (the thought made me cross my legs as I type) I'm glad I wasn't there, his dad had to help the nurse some how, don't want to know the details of that one!

Something occurred to me earlier today that I wanted to share with you. Wednesday the 19th was Joe's 2yr. surgery anniversary....and none of us remembered! That is something I couldn't imagine happening. It feels so good to see Joe totally back to his old self, he even carried a really heavy table for me yesterday all by himself, and I wasn't even worried about his back (well, not that much anyway). Take heart that one day you will be there too! I'm glad that in spite of everything that went on, you are happy about Chris's surgery. Take care and Happy Holidays, you really have something to celebrate!

Renee

[MATJESNIC]

Renee,

Happy 2 years to Joe!!!! Your stories have really made me see there will be a light. Thank you so much.


Everyone:

Thank you so much for all you do throughout the year. Merry Christmas and a Happy and Healthy New Year to you and your families.

[Sherie]

Lori

I'm so happy to hear that Chris is doing well at home now. I know you had a rough time at the hospital but you can put that all behind you now and move on with the healing. The time will go by fast now, I'm amazed that we're already past the 5 week mark and everything is going as well as everyone said it would. I laughed when you said his heart rate went up when the nurse peeked at his catheter! How embarrasing to have that heart rate monitor on at a time like that.

Melissa
Sheena was also extremely modest before surgery and now has no qualms whatsoever when I'm in there washing her hair but I wonder if she's going to go back to her old ways too? I would just be thrilled if she wore a 2 piece this summer, what better way to celebrate her beautiful new back!

Happy holidays to all!

[MATJESNIC]

Nicole only wears 2-piece bathing suits. Even with her scoli, she always did. She hates one-piece.