Patrick is home

[scoliboymom]

Patrick's surgery went much better then the surgeon expected. His thoracic curve is now about 20 degrees, down from 79, which is excellent considering his bending x-rays suggested he was very stiff.
His first week in the hospital was very hard. He had some major pain issues, catheter problems and was getting hallucinations from the morphine. Even the day he went home I was not so sure he was ready to leave the hospital. But the day after he got home he suddenly sprung back to life and although he is still on his pain meds he is doing soooo well.
I am so much more relaxed and relieved now to be on this side of the surgery even though I realize he still has a long road to full recovery.
Thanks to you all for your support on our path to this point.

[laurieg6]

Congratulations! I've been reading your posts & concerns & have related to many of them because I have a son facing similar surgery. It's always great to read of a positive outcome (which it usually seems to be with the kids especially). I look forward to reading your future posts about his ongoing recovery issues.

My son, Alexander, is having fusion surgery, probably from T6 thru L3 on July 12 & I feel sick with worry & fear for his future. It will be great to hear how Patrick regains his activity level & functioning. Thanks so much for all your sharing.

Laurie

[flowerpower]

I am so glad Patricks surgery went well, what great correction! Do you see a difference in height? My son had a hard week in hospital also, had the same issues at Patrick. Coming home is the best feeling, isn't it? I think it makes a big difference for the kids spirits when they are finally able to be home. Its so hard to get rest with all the hospital sounds & nurses coming in every so often. I hope all goes well with his recovery, keep us posted.

Renee

[wbtori]

Thanks for sharing this good news with us! It's a blessing whenever an operation turns out better than expected. Patrick must be delighted to be home. I'm glad his pain is under control now and wish him a speedy recovery.

Did they consider trying another drug besides morphine or offer any suggestions to help Patrick through the hallucinations?

I have lots of questions. My son's surgery is on the 20th. How did you cope and hold it together for him and your family during the surgery, ICU and the following week? I'm wondering what we'll do all those hours he's in OR.

Did you keep a journal or log book for his meds? Did you find you had most of the items you needed for him and yourself at the hospital? At home? We're still planning and packing. Thanks so much!

Wanda

[scoliboymom]

I could write a book on our past 2 1/2 weeks. But it would only be interesting to those who have gone through this or are going to be.
Current update on Patrick: the first few days home from the hospital he seemed to go in leaps and bounds and I thought wow this is really a breeze for him. Then he scared me by developing a temperature one evening at which I went into panic mode. By the morning it was gone so who knows what that was and it hasn't come back. He has lately become much more sluggish and I think it's all just caught up with him. He did lose 5 lbs and he is a skinny kid to begin with.
Yesterday when we went for one of our many daily walks he tells me he's not feeling well and thinks he's going to faint. He was white as a ghost, his lips were blue. Luckily a neighbour was out and she got him a chair and some water and then drove us home. he seemed to recover from that okay and I did call the ortho nurse for her opinion.
He's also been complaining about pain over the past few days in his ribs in the front right at his breastbone kind of at heart level. My thought is that it's just the bones settling in from being manuvoured. Have any of you had this experience?
So all in all last week I felt he could go back to school earlier then suggested by the doc, this week I am thinking yes he will be off for the rest of this semester.

Laurie I know just how you feel with the worry. I know it's hard to imagine from where you are in your journey but I want you to know that for me anyways the burden of emotions that I felt before just came tumbling down like a brick wall. Not to say I didn't cry in that first week and I did have my doubts about the success of the surgery. Getting out of bed the first few days he would get sick to his stomach. The pain in his face when he lifted himself to a standing position with the help of two people. when he did walk he looked more bent and off center then before the surgery. I felt the doctor had done something wrong. But just 8 days later he was popping out of bed himself, no longer sick, and now two weeks later he is walking so straight. he is at 2 1/2 weeks close to needing no pain meds.

Renee: Yes Patrick is now taller then me. He gained about 2 1/2 inches.

Wanda: As long as Patrick had the handpump he was given morphine. I didn't realize he was having hallucinations because he was calling them dreams when he told me first. They weren't really bad but they where getting more frequent and more dramatic with time. When he went off the pump they put him on oxycodon and the hallucinations stopped.
I did keep a journal in the hospital whch was a really good idea because after a while I couldn't remember what happened on what day anymore, they all flowed together. I kept track of what doctors came in, when they came, what they said. ANd believe me they are constantly coming in. Urologists, the "pain team", residents, orthos, Anethetist, nurses (every hour day and night)
Patrick also asked me to write things down that happened because he expected he wouldn't remember much.
I did keep a detailed record of when I gave him his meds. REALLY GOOD IDEA. He was getting oxycodone, tylenol, stool softeners all at different times and they said to gradually increase the time between them in order to wean him off. I set an alarm clock for the nights, used a timer in the days. Had to also turn him in bed every couple hours at night. I think thats what has really taken its toll on my energy levels. Last night he started turning himself and he is going through the night now without meds so yes I too can sleep through the night.
Wow this is getting way too long and I could go on and on.
I will be more then happy to answer any and all your questions. Please feel free to ask away. I know others like Renee have helped me along my path and I would be happy to help others too.

[tonibunny]

Hi there, I'm glad that your son got such a great correction and is recovering well

The sharp pain in the front of the ribs is quite common for people who've had surgery - it's 'referred' pain which is actually caused by damage to nerves at the back of his torso, and it will get better as they heal I've had it happen myself, and lots of my friends have experienced it after their surgeries too.

Hope this helps!

Toni xx

[Sherie]

I'm so happy to hear Patrick is doing well. It's these stories that give me hope and courage to face my daughter's surgery. My friend's son just came home from the hospital today and also had the problems with morphine. I'll know what to be prepared for. I think the journal is an excellent idea.

I have a few questions about the hardware. Did they use titanium or stainless? Is it an all pedicle screw construct and if so, at how many levels did they use the screws in?

Take care and I hope Patrick continues to have a good recovery.

[laurieg6]

I'm so glad Patrick's recovery is now going so smoothly & he has such minimal pain that you are considering stopping the pain meds soon. That is so wonderful. It must be great to see him walking straight & tall & to have the surgery behind you. I know you must have said it somewhere, but how long is his fusion? Also, how tall is he & how much height did he gain from the surgery?

My son is looking forward to having better posture without me (I'm trying not to) saying "stand up straight". He just wants to get the surgery over with & move on with his life & activities. He wants his scoliosis "fixed" & to be done with thinking about it. Sometimes I feel good about the surgery too & at other times I am overcome with worry & sick feelings in my gut. I worry that I picked the wrong surgeon because I chose him due to the fact that he wanted to fuse one level less in Alexander's lumbar spine. The other surgeon that we really liked wanted to fuse to L4, whereas the surgeon we picked said L4 wasn't necessary & that he's only fusing to L3. But the one we picked is harder to talk to & harder to reach because he's only at the Children's Hosp. one day a week... Alexander is only 12 & I felt that he needed the extra unfused vertebra since the surgeon who has done the most scoliosis operations said it didn't need to be fused.

Has anyone else based much or any of their choice of surgeons on a similar criteria - fewer levels of fusion? If anyone could let me know, I'd appreciate it. Thanks for all your sharing & information Scoliboymom!

[scoliboymom]

TONI: Thanks for your explanation on Patrick's front rib pain. It makes sense that it would be something like that.

SHERIE: Hardware is all stainless steel with pedicle screws the whole way up. He is fused from T4 to L1. I believe that the bottom level has hooks and I think the explanation was so that if the fusion had to be continued lower later on it is easier to work with a previous hook at the end. The instrumentation is called P.L.U.S. made by Spinevision. If you go to their website they have a good little video that shows how it all works.

LAURIE: Patrick is now 5'9". and he gained 2 -2 1/2 inches, depending on his previous height which seemed to be different depending on the time of day I measured him. Now it seems much more stable. His brother is 6'3" so I imagine Patrick has a fair bit of growing left.
Patrick was the same way with wanting it over with. He was fretting so much near the end that he would get sick or something and it would have to be cancelled. He even had me convinced he was getting a cold the night before the surgery. I know it was consuming his thoughts as he told me he couldn't concentrate in school anymore.
We did have a second opinion from a doctor at a different hospital. We liked him too although we never got to details of where he would fuse to. Basically we chose our surgeon based on his extensive experience and the reputation of the hospital he works in. Something I never did, but could you be put in touch with others who have had this surgeon? It might make you feel better talking to others who have used him.

I'd be happy to answer any more questions you have or share more of our experiences. All the best with your journeys. Please keep us updated.
Ramona

[Sherie]

Hi Ramona

I was just wondering how Patrick is doing, he's nearly 1 month post-op? Hope he's having a good recovery. Did he lose some weight?

Take care

[Aussiemum]

Great to hear!!

Hi there,

You've never heard from me but I had been following along with Patricks surgery on the spinekids site. I really felt for your anxiety before the surgery.

So glad that it's all over for you and your BOTH doing so well now.

Cyber hugs from Australia
Del

[scoliboymom]

Just an update on Patrick
We went for his 6 week post op appointment this week. I have been worrying about the way Patrick looked because to me he looked really unbalanced and still walks around with his head bent sideways and he bends forward at the waist.
however the surgeon was very pleased at how he is coming along and told us it would take up to a year for his spine to fully find its new position, or was it his brain to find it's new body??
Patrick is feeling well and seems to have his "energy " back, as do I.
He commented to me the other day when we went to the Canada Day festivities and he had been up and about on his feet for several hours that it has been so long since he could do something like that as even after a short time on his feet would leave him achy. So to us the surgery has been a success and we only hope his recovery continues to go smoothly.
Ramona

[laurieg6]

Hi Ramona,

That is SO great, how well Patrick is doing! It's incredible that he's feeling energetic enough to walk around a festival after only 6 weeks. I'm so happy for him & for you - what a relief it must be.

Tomorrow we go for Alexander's pre-op appointments. His surgery is a week from tomorrow. He denies much in the way of emotions about it but he is planning fun activities for us to do everyday for the next week. He seems to be trying to have his whole summer in the two weeks since school ended & his surgery happens. I'm just trying to support him...

Laurie

[wbtori]

Hi Ramona,

What good news...! Patrick is recovering nicely, and his surgeon's very pleased. So glad to hear he's feeling stronger and able to enjoy summer activities. The post op app't must be a relief, knowing now that the things you're concerned about will take more time to get back to normal. Best wishes to Patrick for continued healing and quick recovery!

Wanda

[MATJESNIC]

Great news for Patrick!!! I hope in the next two months you can give me some pointers. We just had our appt. at Children's in Phila and we loved the hospital and the surgeon. I asked him how many spinal fusions he does a year and he said about a hundred (he is Chief of Staff so is involved with tumor surgeries and other types). He has done around 2,000 over the past 20 years, so I will trust him to know what he is doing with Nicole.

Our pre-op is August 24. They will use stainless steel pedicle screws and fuse her from T-2 - L-2 or L-3. It will take 5-6 hours including the anesthesia time. Tonight she is going back there for an MRI of her spine. We could have done this another time but we want to get it over with.

I am thinking about Alex and pray for a successful surgery. Then you can also give some advice. I can't wait until I can start helping others, too. I am still a long way off from that.

I could not be facing any of this without all of your support. I feel so blessed that I am not alone on this journey.