Hey WNCmom!

[Pooka1]

Excellent result!

These surgeons are AMAZING! They are spine artists!

Best regards,
sharon

[laurieg6]

Congratulations on a successful surgery. I'm so glad to hear that Sidney is already sitting and will stand up and walk a little today. It sounds like his correction was amazing. I am really happy for you. Even though the first few days after surgery can be stressful, esp. in the hospital, it only gets better for all of you from here on.

[CarolinaGirl]

I'm so happy to hear about Sidney's successful surgery. I knew that Dr. Cahill would "work his magic!" I will continue to keep Sidney and you in my thoughts and prayers for a very speedy recovery.

Renee
Sam's Mom - VBS in Feb '08 with Dr. Cahill

[pmsmom]

Glad to hear that the surgery went well!

God bless you all! (esp. Sidney!)

[gillespie]

Mary Ellen
I am so happy hear all went well. It must be such a relief. I can not wait to post the same news 10 days to go. Hope recovery goes well and I look forward to reading your next post. God Bless !!!

[jillw]

MaryEllen, that is Great news - the results are as good as they get! Now its time for a fast smooth recovery!

[Kitty]

Hi Mary Ellen,
I'm very happy to hear all has gone well and you have maximum correction. I cried when i read your post, because I so desperately want to be where you are and at this stage, i feel we may not get there. We have surgery in less than 72 hours and i am SO NERVOUS.

But very very happy for you and Sidney. Well done to all of you.

Keep me posted.

Lisa

[WNCmom]

24+ hrs post-op

I just realized I haven't posted since this morning, which seems ages ago. Sidney is still in the PICU. He is doing fine--he sat up in a recliner today for 5+ hours and did quite a bit of routine breathing therapy. No walking, because the sitting wiped him out. Dr. Cahill said he did more than the requirements today.

I think they are keeping him here because it was such a long surgery and they just want to keep an eye on him. They don't move anyone out of PICU after 5 pm on Friday, so he will be here over the weekend. Fine with me; as the nurse said, "he gets a private room, one-on-one care, and a great view of the ghetto." The hospital is in North Philadelphia.

Lisa, I know how hard it is to be in waiting mode. I'm not sure how I got through yesterday; I read short articles in magazines (al my attention span could handle), paced, and did a lot of writing--the story of Sidney's scoliosis, my fears, all my worries about the new larger curve. And when I ran out of that, I wrote out from memory a long Buddhist prayer I learned years ago. That took me a couple of hours. Somehow writing helped me disidentify from my fears a little and calm down. Still, it was excruciating. Sometimes I had to literally take it one breath at a time. I know you will find your own way to be there for your daughter. You will make it. Also, I desperately wanted to hope for a better correction than predicted, but was afraid to, even though I'd read it often happens. Sidney's main curve only reduced to med 50's on bending, so it was very stiff. I don't have a measurement, but I know it's a good correction. It happens, and it's not rare. I think there is hope. I pray you and the surgeons can decide on a plan you feel good about.

Although I am on the other side of surgery, it will be few more days at least before I feel on solid ground--Sidney is still heavily medicated, although so far his pain has been under control. Even now he has a low grade fever-not uncommon, I'm told, but still it concerns me.

Lisa, hang in there. I'm thinking of you; we all are.

Mary Ellen

[WNCmom]

Sidney 48 hrs post-op

It was a big day today for Sidney. He's doing as expected and on schedule, but his walking is very shaky. He walked twice with lots of support: once to the PICU doors, and then again 10 steps to the toilet to try to have a bowel movement (no luck). He was up in the recliner again for about 5 hours in between. They have removed the morphine pump and PCA and he is now on oral meds. He is drinking water, juice, and eating jello. No nausea, but some stomach distention.

Last night felt very long. Although his temp today has been normal, it was just slightly elevated last night off and on. He also has had oxygen prongs in off and on. His face is still slightly swollen. One of his lungs had slight collapse yesterday but is fine today; his breating exercises have gone well.

I think Sidney may actually have a rather high tolerance for pain, but he doesn't know it (if that makes sense). For him, the thought of pain is usually worse than the reality. He is uncomfortable sitting up and isn't really motivated to walk (although the nurses aren't pushing him to do a lot because he is shaky). His back is very stiff. We haven't measured yet of course, but he has gained several inches (he was 5'8"+ tall going in; he now seems to be over 6 ft.). I can only imagine how much his muscles have been stretched. I think he's in for quite a bit of discomfort in the short run, at least, as his body adjusts to the correction. This, along with the long surgery, makes for slow going.

I have been looking back over posts on immediate post-op recovery for children, and it has helped me know that all this is part of the deal. The nurses all assure me he is progressing well. With such a long fusion and surgery, I'm sure al this is to be expected. Tomorrow he will be sitting up all day, and walking more.

I'm somewhat sleep deprived, but I found that an evening nap makes it worse (then I can't sleep as well at night when things are usually quieter), so I napped this morning and that felt wierd, too. I hate to miss anything during the day.


Mary Ellen

[Susie*Bee]

Mary Ellen-- just wanted to say you are doing a wonderful job of explaining this early recovery time that will benefit other moms who wonder what it will be like. Everyone's hospital time and recovery are different, but when you read through a few, they sure give you a lot of insight as well as an understanding that, even though it's a tough time, you do get through it all ok.

I've been so glad to read how well Sidney is doing. Dr. Cahill had such a nice manner when he saw me during my hospital stay. I'm so glad your experience is going well. It won't be too much longer till Sidney will be eating normal food again-- and probably longing for some of your home-cooking.

As far as those naps go, remember that you are going to need your strength for the long haul, so try to not get to the point of exhaustion. Eat well, try your best to catch enough zzzzz's to keep you going ok. Sidney will need your vigilance more once you get home-- right now he has other eyes keeping watch over him as well. Ask them to wake you if he is uncomfortable or awake and wanting your "awake" presence with him.

Big hugs-- and keep us posted with the progress. Susie

[Pooka1]

Tall boy!

Mary Ellen,

It's great to read your updates. I know this information will benefit others.

Your mention of Sidney's height triggered my memory of the first time Savannah stood post-op. She seemed so much taller though she didn't gain nearly as many inches as Sidney.

Take care of yourself. I know it seems impossible to think about yourself but I had to learn that lesson also.

Best regards,
sharon

[scoliboymom]

Hi Mary Ellen
I've been following your posts and so happy for you and Sidney that this stage is now behind you. Although you both still have your work cut out for you it's that relief of being on the other side that I remember so well.
He seems to be doing very well and will be out and running again before you know it.
As Susie and Sharon say take care of yourself too and we'll be here for you.
So glad too that they could build some kyphosis in. Patrick's just wasn't to be
but we knew that.
Wishing Sidney a fast recovery

[malka22]

Mary Ellen,

Sorry I'm weighing in at this "late date," however, better late than never. I read all of your posts & am so very happy that all went well. Welcome to the other side!!! I'm interested to know what Sidney's curves are now & I would bet that the correction is MUCH better than Dr. Cahill originally predicted. What I found is that the surgeons like to predict not such a great correction & then you are pleasantly surprised at the amazing correction they WERE able to achieve.

Also, keep in mind, that although we feel "stuck" on the #s, I know I was, overall the most important thing is how Sidney is feeling, how free of complications he is (I pray there are none!!), & how successful the surgery was. From what I am reading, your family has truly been blessed with all of the above!!!

As far as Sidney's breathing function, I can't wait to hear the good news. If he had difficulties pre-op, I'm sure you've noticed the difference now that you're post-op. My daughter had a thoracic lordosis as well, & her breathing was compromised. After her fusion, she stopped taking those extra breaths/stopped having SOB. What a miracle! I can't wait to hear the same about Sidney.

Healing prayers & love,
Martha

P.S. That's awesome that Dr. Cahill was able to build in just the right amount of kyphosis. I knew he'd be able to! I know you will look back, read your old pre-op posts, & cry with joy at the wonderful outcome!

[WNCmom]

Sidney 72 hours post-op

It has been a challenging day for Sidney. Last night he's gotten the most sleep so far (and so has mom), but the general consensus seems to be that the meds are so effective on him that they not only dull the pain, they make it difficult for him to walk well. The odd thing is that he seemed more "with it" on the morphine than he does on the oral meds, which make him somewhat glassy-eyed and a little groggy. To try to clear his system, he's had no pain medication since last night. He has not been in bed since he got up this morning, and sitting up in a chair has been tiring and painful. However, he has walked several times today, the last time pretty far and without support by nurses. His blood oxygen levels are holding well, which means his breathing is effective (this was a concern, and the reason why he has not been allowed to be in a prone position or even reclining today until now).

The last hurdle is one he has not yet crossed: the big bowel movement. His belly is tight and painful, and he has had laxatives and prune juice, and lots of water. It will come; we just don't know when. Still has the foley catheter in. I don't know when we will leave the PICU or be discharged, but I feel sure Sidney will be among those who take more than 5 days to be ready to go "home" (we will go to a nearby RMD house because we live so far away and want to stay nearby for a while). The plan was for him to leave Monday 11-18. I have a feeling the BM will make a big difference.

Martha, Renee, and Ramona and all--thanks for sharing the results of your childrens' surgeries. For those who are fused to L4 (you, too, Susie--your fusion is the same as Sidney's), I'm interested in how flexible you are and what the limitations are. I know I can't do much about the fusion, but I guess I just want to be prepared.

I did take a nap today, Susie, while my husband was here (he is here all day, and only sleeps away at night). You are right, I know, about being prepared for the post-hospital duties.

Thanks for being out there. Even with a care page so I can hear from friends at home, I think I would feel very alone unless I was in contact with those of you who have walked this road. Lisa and Tahlia will be in my thoughts tomorrow.

Mary Ellen

[Susie*Bee]

I think comparing Sidney's and my fusions would be like comparing apples to bananas... age changes the picture entirely, plus I have arthritis and DDD, etc. There have been some younger people with long fusions though, so maybe you can hear from some of them if you start a thread asking about it. I'm glad you got some sleep last night. Hopefully Sidney will be feeling better soon, especially since they are working on the pain med dosage. It was explained to me that they want you feeling ok enough so that you feel like doing things, but it easily crosses over into the area where you are too doped to function well. There's that "just right" area where you aren't in too much pain and you are able to think ok and manage yourself. He'll have success with his bowels sometime soon... but that first one can be a challenge. (Isn't it funny how this becomes a BIG THING after this surgery. Just like those first little blurps of gas are such a victory! Worth cheering about at the time!)