Need to make decision on surgery for 10-year-old child need advice from others [Archive]

cdhheidi

01-31-2006, 01:28 PM

Though my son does not have CP, he does have some similar issues to what you are dealing with. He was born with diaphragmatic hernia (most of his abdominal organs in his chest keeping his lungs from growing). As a result he has severe scoliosis. He has had 7 surgeries for it (he is 9 yrs old) including 4 grow rod surgeries from ages 3-5, 2 spinal fusions (ages 5 and 8) and halo traction for 2 months last year.

Because of his birth defect he has hypoplasitc lungs, and is dependent on O2 and bipap as well as GT and TPN fed for nutrition. He has both kinds of apnea, short bowel syndrome, and a few other issues that complicate most surgeries he needs.

We too were concerned about his pulmonary status for the surgeries, and when he had his halo traction and most recent fusion we made sure that we did it at a large children's hospital with an excellent pulmonary team. Our orthopod was awesome, really left most of Sean's care up to the pulmo team for management as Sean is a bit beyond the "norm" for scoliosis patients.

Had we not done the most recent fusion (his upper T area was going forward in a kyphotic direction) We were told that spinal cord damage would have happened and made a severe impact on his life. When he had his first fusion ate age 5, his curve was about 100 degrees, with grow rods holding it open. Had the rods not been there he likely would have had a curve more like 130+. I dont even want to think where we would be today without having done the fusions.

The thing is, that as you know no two kids are alike. You need to speak with the various physicians involved in his care and if you can, see if you can get them together in a team meeting to discuss the pro's and cons, and maybe also see if there are alternative ways to go about the surgery. Our local orthopod who did the first fusion worked with our pediatric surgeon to come up with a way to do both anterior and posterior without having to totally deflate his one good lung. He was right there with the ortho's when they went in and helped them do what they needed and we are ever so thankful for him. I would also highly reccomend making sure you are seeing a top orthopod for kids with spinal issues. We see Dr Song in Seattle now, and he is wonderful. Took Sean's films and history to several conferences before deciding that halo traction was the best alternative for my little guy.

Anyway.. dont know if this helped any, feel free to ask any questions. I try to come by here every few days...

Hugs, Heidi

blackwidow

02-02-2006, 02:10 PM

Thank you for taking the time to share your story about your son. He sounds like he has been through quite a bit and you must be quite proud of him and it sounds like he's got a very good mom! You are very much on top of things. Your suggestion about the doctors meeting and discussing pros and cons is a good idea I hadn't thought of. That is the biggest problem that I've had with my son's doctors is getting them all on the same page. It seems none of them either talk to each other or read each others reports. It makes me quite frustrated. You mentioned your son had two spinal fusions. Why two if I may ask? I guess I'm hoping this is a one time deal for my son. Also you mentioned halo traction. I'm not sure what kind of procedure this is. I'd like to find out more about that. It sounds like your son's doctor is wonderful and the hospital provides excellent care. I'm not sure if I'll be going with the doctor my son currently has this was only his 2nd visit with him. I don't know much about him he was referred to me by my son's orthopaedic dr. who did his hip surgery and he is a wonderful dr. I found out that there are a couple of my son's peers from school who have undergone this procedure and have used the same doctor. So I'll be talking with those families. From what his PT has said he is a good surgeon. My son will be seeing his pulmonologist in a couple of weeks. Did your son have any pulmonary function tests done prior to any of the surgeries? This is something that I want to find out from his dr. I need to know where he stands at right now. I'm assuming this procedure would be done posteriorly but I don't know this for sure yet. I have to schedule another appt. with his spinal dr. to go over everything since I was too upset on the prior appt. to even ask questions. I think if anything was done anteriorly it would put my son at too great of a risk especially if they had to deflate a lung. Some other questions I had for you was how did your son do after these operations did he develop pulmonary complications like pneumonia or atelectasis (fluid filling up in the lungs/lungs collapsing)? How long was he in the hospital? And how was his therapy/rehabilitation? Does he express to you that he has any back pain because of the rods?

cdhheidi

02-02-2006, 07:31 PM

I am glad to share what I can.

Sean is a trooper for sure. Back in his NICU days they called the Knight of the NICU, and that has always been true of his life.

Do you have one doctor that tends to be more involved with your son than the others? I have found that our pediatrician (we changed when Sean was 3) has been an awesome advocate for him. He is really good at getting things done, and getting the attention of the right people. If you have one doc that "gets" your son best then maybe he/she could be the ringleader to get discussions going on. Or perhaps your primary hospital has a case mananger or social worker that could help get the ball rolling?

Yes, Sean has had 2 fusions. His first was at age 5, from about T2-L2 and was held in place with 3 rods for extra support. The upper part did not take well, and ended up growing forward in a kyphotic direction. Normal in that part of the spine is 45, it got up to about 90 degrees and the docs were very concerned. Prior to his first fusion we had him evaluated in San Antonio by the VEPTR guru (Dr Campbell), but he was denied as his case was very complex and they felt he might not survive the surgery due to excess bleeding and such. That is when we had the fusion done in our home town, Boise.

A year later we still saw problems with ongoing curvature and so we asked Dr Song (in Seattle) to consider his case. Again he was denied, but Dr Song took his records to some national conferences as he did not want to just give up on Sean. Ultimately it was decided that removing his fusion hardware and scraping away the scar tissue, then placing him in Halo traction would give him the best chance of some additional straightening in the upper T area. To do this they screwed a titanium halo onto his head. (I will try to attach a photo to this message, hopefully it will work!). From that they placed him in nighttime traction with about 8 pounds of weight hanging from the halo and 25 pounds during the day. Over the course of 2 months, and with the subsequent 2nd fusion surgery the 90 degree curve is now 60 and as of our last appt in November is holding nicely.

Normally a fusion is a one time procedure, but realize that Sean was only 5 and had what they called a severe malignant curve. There is always the chance of the fusion not taking completely, of infection, and various other problems. You know how surgery is, lots of potential problems, though thankfully few people really have them. We have 3 hospitals that provide Sean's care, our primary is in Boise, and believe it or not I prefer it to just about any other hospital we have been to. The other one that has provided other care is Seattle Childrens, where Dr Song is from and they are also quite good. He has also been seen at Denver Children's, but that was for a different problem, Pulmonary Hypertension.

May I ask your docs name? Is he a member of the Scoliosis Research Society? An awesome group of docs, and if you are looking for a 2nd opinion (which I would reccomend) I would suggest checking to see if there are some in your area that specialize in your son's age range.

Absolutely he had pulmonary function tests prior to his fusions. He has had a VQ study, various CT's, MRI's. etc. Thankfully he did pretty ok with them, one of the problems with his birth defect and the hypoplastic lung is that it is harder to get them off the vent once they are on it too long, so our goal is normally to get him off within 2 days if we at all possibly can. Now that he is on Bipap (3 1/2 yrs now) we can just switch him to his own home machine for breathing support once we take him off the vent which helps to get him off a little sooner I think. He did develope Pleural Effusions after two of his spinal surgeries, the first fusion and the one where they removed his old hardware and placed the halo. He needed a chest tube for a week the first time, the 2nd time it resolved on its own (although we did use the VEST for percussion therapy, and we now use it at home a couple of times a day). It is an awesome machine if you havnt used it for your son.. I dont know whether it would help him or not, but we used it after his first fusion and teh docs felt it really helped to keep him from having more trouble with his lungs.

First fusion he was in... 8-9 days? Halo traction he was in the hospital for almost the entire 2 months, with a couple of weeks in a hotel with me being his primary caregiver/traction expert. 2nd fusion, one week. As far as therapy goes, I generally do most of his care anyway so I worked with him on excercises that the PT/OT gave me, and once we got home to Idaho he had 2x a week PT for a couple of months to build up strength. Other than tiring easily due to his various issues, he really does pretty well. He IS on long term pain control, but that started clear back during the grow rod phase of this trip we are taking. He takes methadone and neurontin, as well as PRN tylenol with codeine, since he was... 4 yrs old. The quality of life he has as a result of the pain meds is far better than it would be without.. I know some people dont like the idea of pain meds, but frankly, for chronic long term pain, they are definitely worth it.

I hope this helps some.. I know it is a bit overwhelming but its good to find out as much as you can so you can be prepared to ask whatever questions are relevant to your families situation. Feel free to ask again if there is anything I can help with.

Hugs, Heidi

Carmell

02-03-2006, 02:19 PM

Hi,

I just wanted to welcome you to the list. My son is also 10 and has had multiple back surgeries. His medical issues are very different than your son, however, many of the same processes are similar. Heidi is wonderful! (Hi Heidi!) She has had to make many choices for her son to give him the best quality of life possible. She has done a great job. I agree that having a main doc who "gets" your son and is willing to help you advocate for him is a great comfort and a great step in the right direction.

Braydon does not have any physical restrictions. He was born with several malformations in his spine that caused scoliosis. His congenital curve at birth was 45 degrees. By age 9 months it increased to 75 degrees. At age 11 months he had anterior/posterior fusion surgery (fused from T5-L1). This stopped the progression of the curve. At age 5 he had developed a lower compensating curve and also began showing signs of lung function compromise. A PFT showed that his lung function was 46%. At age 6 he had VEPTR implant surgery. His lung function improved to 75% as of Sept. 2004. He actually has an appointment with the pulminologist next Friday because he's been having episodes of shortness of breath and feeling like "there isn't enough air around me". He also has been having bad headaches which is unusual for him. So, we're going to try and figure this out.

I also agree that getting another opinion from another ortho is important. Braydon's ortho has operated on many CP kids. I would want someone who has experience treating someone similar to your son. Someone who will support you - the parent - for the journey.

Best wishes and keep us posted.

cdhheidi

02-03-2006, 02:43 PM

Hi Back Carmell! :)

We have a mutual admiration society, as Carmell has also done an amazing job at making sure Braydon has the best quality and consistency of care. Important when taking care of these special kids of ours. :)

One other thing that Carmell often mentions, scoliosis is rarely an emergency, so do take time to get other opinions. 2nd or even 3rd opinions are important to make sure that your child is getting the best of care, and the RIGHT treatment plan for his issues.

Hugs, Heidi

blackwidow

02-06-2006, 11:20 PM

Hi, cdhheidi
I don't know what happened I had a whole message typed out and then I lost it somehow. Frustrating! Anyways, sorry I took so long to reply back. I've been busy with work and we celebrated my son's 10th birthday this past Sunday. I wish I could say my son has one doctor that could get the job done (ring leader). Dr. Schwab (his orthopaedic doc) has talked with Dr. Channing Tassone (spinal doc) about Hunter and is his medical problems and they were both there to talk to me at the dr. appt's. Dr. Schwab is very concerned about Hunter's pulmonary problems and was hesitant about even doing Hunter's other bad hip since this was an elective surgery and he thought we should just wait and see how things go. I was trying to see if he could have his other hip surgery this summer before this came up. Now this takes priority. The problem is, is that I would think it would be hard for me to get. Dr. Schwab to talk to his pulmonologist and neurosurgeon since he won't be the doc doing the surgery. So I will have to make sure that Dr. Tassone if I choose him will be in contact with the other doc's and I will be talking to them as well and make sure there is a plan of care in place and that everyone is on the same page. My son has a baclofen pump and this may further complicate things since the neurosugeon will have to reposition his catheter in his spine once the spinal fusion is done.

As for a second opinion, should this be obtained from another dr. from another facility? I live in Milwaukee, WI there is a children's hospital in Madison, WI about 90 min. away. Although I don't know of anybody who has had anything done out there. I'm somewhat hesitant about going to another facility because I would have to find new docs to cover all of my son's needs and the distance from home as well.

Another question I had is what is a VQ study? I'm not familiar with all of the medical terminology. My son uses the VEST as well when he is sick and I have found that it seems to work pretty well. Did they use this on your son post op? I would think that would be too much vibration for them.

I will have to check to see if my son's dr. is a member of the scoliosis research society as well as look for other dr's. in my area who are members for a second or third opinion. I know you mentioned that scoliosis is not an emergency. I guess I feel pressure because of how fast it has progressed I feel like my son has only a small window of opportunity before his condition gets worse and will put him at too great of a risk for surgery. Perhaps, I feel this way because I'm not fully informed and I feel very scared about things.

I seen the picture of your son and he is such a cutie! I hope things continue to go well for him and you and the rest of your family as well. Keep in touch!

blackwidow

02-06-2006, 11:37 PM

Hi, Carmell
Thanks for sharing your story about your son as well! I didn't realize there were different forms of scoliosis until I came to this site. Your story took me by surprise. I couldn't believe the progression your son had just in the first year. It is hard to understand how something like that can happen. It must have been scary for you since your little guy was just a baby. I wanted to ask what VEPTR implant surgery is since I think cdhheidi had mentioned this as well? Did your son have any pulmonary complications after any of these surgeries?

CurvySAT05

02-07-2006, 02:17 AM

I had fusion for adolescent scoliosis, but just thought I would touch in here, I hope you dont mind. I had complications from my fusion because my doctor did a thorocoplasty (they cut the ribs down to decrease the rib hump). Part of my right lung collapsed, I got a pleural effusion, and pneumonia. I think the most important thing to remember about all this is that while he has pulmonary problems now, the longer you wait, the more problems he will have from progression. The spine can actually restrict the space of the lungs and put added pressure on the heart. Get it done while his lungs are in the state they are now, rather than wait until his lungs are worse and his spine is worse. Once it progresses farther it will be harder to get a good correction.
I attended a workshop the other day at my surgeons office and he said that it is necessary with neuromuscular patients to get their spine taken care of as soon as possible to prevent further illness due to the condition.
My best friend from middle school had CP with scoliosis and was fused from T2-Sacrum. She is doing so well now. Her parents have never regreted one day of it.
Good luck in your decision. Maybe you could see if you are near a shriners hospital. They do all medical treatment free of charge.
Mandy

cdhheidi

02-07-2006, 04:48 AM

Happy Birthday to your son!

For kicks I looked up your area at the SRS website, and the only doc that came up is Stephen P. Delahunt, MD. I would suggest maybe he would be someone you could have that 2nd opinion from? Or if Chicago isnt too far there are many docs down there as well, including a shriners hospital (as someone else mentioned they have no charge for the care of your child). I have a friend who works at Milwaukee childrens hospital as well as has a child with serious health issues. It seems like quite a good hospital, and it is one of the few in the country that I would certainly consider for Sean should we ever have to move from our area.

I do understand all too well about having a child with many doctors to try to get coordinated care at a different hospital other than home. When Sean had his halo procedure done, it was one of my biggest concerns. Thankfully Dr Song pulled in the head of the various departments that we needed and we had consult with them all prior to the halo. Doesnt mean you wont run into trouble, but I felt he really tried to be on top of Sean's particular needs before they began.

A VQ study is a test where they have the child breath "canned air" that has radioactive isotopes attached to the air, and they also inject a dye into the blood. The test is able to see where the oxygen goes in his lungs, and where the blood actually picks up the oxygen in the lungs. It helps them to show how well the lungs are working and if there are areas of concern where they are not. In Sean's case it showed that of his total breathing capacity, 87% was in his right lung and only 13% was in his left lung. Concerning, but not unexpected. Clearly he is very dependent on his right lung and they did not want to risk damaging it with the fusion. That is why it was such a blessing when our peds surgeon was able to come up with a way to do the anterior part of the fusion without deflating the lung.

Yes, I mentioned that scoliosis is not an emergency. It doesnt mean that you shouldnt be working on resolving the issues and figuring out what to do. It means that it isnt something you have to decide this month. Sometimes it takes a few or even several months to work out the details. You should have a little time though to get that 2nd or even 3rd opinion. My guess is that his lungs will never get better than they are now? At least I know that is Sean's situation, and given your son's age I would imagine the same goes for him.

Yes, we used the VEST post op. We waited a couple of days, and then started in slowly and at the lowest settings. Yes, he was uncomfortable, but we timed it with his pain meds so that they were peaked at the time of the treatments and he really did pretty well. I tend to think that is one of the reasons his lungs didnt have too many problems with the procedures.

Keep on asking questions if you have more, I am glad to be able to share what I can.

Heidi

blackwidow

02-07-2006, 12:04 PM

Hi, cdhheidi!
I looked up Dr. Delahunt and I think he is an adult scoliosis dr. since he is associated with Aurora Healthcare and has a clinic at St. Luke's Hospital. I will call his office to see just to make sure. I looked on the UW Madison website and found Dr. David C. Mann in his bio it says he is a fellow of the scoliosis reseach society. There is also another doc out there Dr. Kenneth Noonan and his bio seems to show that he does strictly spinal surgery. I will most likely get an opinion out there. I'm not sure yet if I want to go down to Chicago since it is some distance from home. But I will keep it in mind as another option.

As for the Children's Hospital here in Milwaukee I have mixed feeling about it. I have had a lot of bad experiences with my son in this hospital usually as an inpatient is when problems arise because the residents don't know your child I usually have to fight like tooth and nail with them to see to it that my son gets the proper care and if he is not in the ICU and on a surgery floor the nursing is not as good probably because of the patient:nurse ratio. The two recent surgeries did not have a plan of care in place for the pulmonary complications. He was sent to the surgery floor after each of these surgeries and should have been sent to ICU. I can understand on the first recent surgery the baclofen pump because this was the first surgery since he was a baby so I didn't know how he would do after the surgery. But the second surgery involving the hip was a much bigger surgery and I thought he was going to the ICU after surgery but ended up on a surgery floor instead and things just went downhill from there. His ortho surgeon was on vacation after that surgery and so I had to fight with the pulmo. dr. who was attending and the residents to get him back down to the ICU because he was deteriorating fast and the pulmo dr. was so arrogant and did not listen to me at all until things were a lot worse. That surgery in particular and its aftermath has left me very apprehensive. Now knowing that this operation is an even bigger surgery I'm very scared to say the least. I need to make sure this time if it is done at this hospital that no stone goes unturned. Sometimes just getting him into the clinic for an appt. can be a 3-4 month wait in itself. It is hard if you're in a situation where your child needs to be seen soon like what is going on now. The soonest I could get him squeezed in to see his pulmo dr. is Feb 21. I was hoping for something a little bit sooner but it is better than waiting til March 15 this was the appt. he had initially. Of course, my son hasn't been to any other hospitals for care so I have nothing to compare it to. I'm not sure if what I'm experiencing is normal for someone who has a medically complex child not everything goes smoothy, unfortunately.

This VQ study is something that I am going to inquire about with his pulmo dr. It sounds like a good test and would tell me what I need to know.

I thought of a couple of other questions to ask you. Did your son need a blood transfusion after the fusion surgeries? I read that blood loss is likely. I know my son needed one for his hip surgery. Also did your son have to wear a brace after the surgery or when he came home from the hospital?

Once again I want to thank you for keeping in contact with me and answering all of my questions. I know this takes some of your time as well and I truly appreciate what you're doing for me. You've been a great help to me so far. I have off over the next couple of days and I will be doing some more homework hopefully I will be able to get in contact with a couple of families near me. I'll keep you updated on what I find out.

Carmell

02-07-2006, 02:16 PM

I just wanted to ditto that respiratory therapy (RT) immediately after spine surgery is very necessary. Braydon began RT within hours after his VEPTR implant surgery. They had to deflate his right (weaker) lung. The RT helped keep him from developing pneumothorax and pneumonia. If your son has fusion surgery, I would strongly encourage you to ask if RT could be ordered, usually every 4 hours until they are breathing well on their own. They have a percussion machine that vibrates the tissues. Braydon had a huge thoracotomy incision. The percussion did not hurt more than anything else. It was almost soothing, actually. Please look into that for post-op care. You'd hate for him to have more problems than necessary.

I've heard of Dr. Noonan. He is a pediatric ortho. I don't have first-hand experience with him, however. Maybe you could interview a few before actually going for a consultation. Good luck finding the right surgeon with the right plan for him.

The VEPTR surgery is a vertical adjustable device. Once its placed, you have to expand it every 6-12 months to keep up with the child's growth. If your son has problems with surgery to begin with, I'm not sure I'd want him to be submitted to repeated surgeries until he reaches full skeletal maturity. It does buy time before fusion is required. That's the great part for these kids who have such weak and collapsing spines. They have support to give their bodies a chance to grow and avoid the serious lung issues that many have when they have such a compromised chest space.

Like I mentioned above, Braydon did not have pulminary complications after surgery. I believe 100% that this was because of the RT post-op. His lung function now is better than its ever been.

When he does have surgery, make sure you know the plan for post-op care, including going to PICU! Yikes, that's frightening that they didn't send him to PICU after a big hip surgery and his history. Keep up the fight! You are doing great. I'm looking forward to hearing updates.

blackwidow

02-07-2006, 04:30 PM

Hi, Carmell
I went to look up more info. on the VEPTR implant and found an article about the VEPTR implant surgery performed by Dr. Noonan I guess it was the first one performed at that hospital. I'm not sure if this is something that would be considered for my son since his scoliosis is not congenital. I will bring this up with the doctors though. I did have a question about the implant though you mentioned it needs to be adjusted every 6-12 months I believe this was mentioned in the article as well. Is it adjusted surgically? I was unsure about this.

I hope for my son this is a one time surgery. I know that there is a possiblity that the spine may not fuse and there could be problems with hardware. I just hope he doesn't end up with a curvature above or below where they decide to fuse. I don't know the specifics of what the surgeon is going to do yet we haven't gone over any of that. So in that respect I'm still in the dark. On the last appt. I was not expecting for them to tell me that his scoliosis progressed that much. I thought my son had a couple of years yet before I had to think about this. So when I found out I was too upset to go into it any further that day. His doctor wants me to get a pulmo. consult first and then come back and talk about things. Once I find out what this doctor plans on doing I will get a second and possibly a third opinion as well as meet with his neurosurgeon about the baclofen pump and what will have to be done in regards with that.

Once again, thanks for taking an interest in my son's situation and offering your advice. I hope to keep in touch with you as well!

lorrie

02-07-2006, 04:40 PM

Hi blackwidow
I just wanted to wish you well though I don't really have any advice to offer. My daughter also has CP though your son's problems sound more profound than hers and had surgery in August. Although we've had some problems (detailed elsewhere on here but don't look if you're feeling wobbly!), her shape is so much better thaT i have no doubt we were right to go ahead. We were told that, while idiopathic curves will sometimes stop progressing, especially once people have stopped growing, neuromuscular ones, likke our kids, don't. They just keep going - so I can at least confirm that much that your doctor has told you.
Prayers and hugs
Lorrie

blackwidow

02-07-2006, 05:25 PM

Hi, CurvySAT05
I'm happy to talk with anyone who wants to give me some advice. I need all the help I can get in making the right decision. I haven't talked to anyone who themselves has undergone this surgery. Just parents whose children have undergone the surgery. You would be giving me a different perspective. I gather that despite the pulmonary problems you had that you are glad that you had the surgery and that your scoliosis is now corrected. I know what you are saying and I know in my heart you're right. My son will have to have this surgery and the longer I wait he is put at more of a risk of further complications. I noticed you mentioned you had the hardware removed? May I ask why? I was wondering how much this bothers the person. Also do you still have any back pain since having the surgery?

cdhheidi

02-07-2006, 09:03 PM

Sean did not need blood for his first fusion (yeah!) but for his 2nd he lost a fair amount. He ended up needing 4 units as well as various other blood products (platelets, etc). It actually was the only time he needed blood for surgery other than his initial CDH repair at 1 week of age, and with as many surgeries and such that he has had thats rather miraculous!

Our surgeon in Idaho is pretty cautious with Sean. He wore a brace after every one of his back surgeries here, and after his grow rod placement was also flat on his back for 6 months. Most docs do not go that far, and after his fusion in Seattle there was no brace of any sort (yeah!!!!!). Just one more question to ask your docs about.

I can understand feeling the need to be cautious with your son given the situations you have been through. I know that I have my own horror stories about some doctors and nurses to be sure! ONe of the reasons we like it at our home hospital is that we dont have residents. Attendings only, though there is an occasional resident they never NEVER take care of Sean. And generally speaking the partners of our docs rarely take care of him either... (maybe we are a bit spoiled, but I love it!). Traveling IS hard to do, but I am thankful that we did the few times we have. Sure, there were a few problems and we are thankful to be HOME, but I would not trade having gone either.

I will be around this week, but the following couple of weeks may be sporadic. Sean has a couple of procedures coming up and they will be a bit dicey as to whether he comes home right away or not. He has a cardiac cath next week and the cardiologist will need to remove his central line, do some angioplasty work to open up his SVC and hopefully place a few new stents as well as some "roto rooter" work in his SVC. Then a few days later or the following week his peds surgeon is going to replace his central line but in a trickier than usual procedure in order to avoid the narrowed parts of his SVC. Thankful we have these two on his team... for sure.

Keep me posted, and no problem with answering questions, I like to share what I can and hope that it will somehow help your son.

Heidi

Snoopy

02-08-2006, 07:41 AM

Heidi,

Just wanted to wish you luck with your son's upcoming procedures. My thoughts and prayers will be with your family.

Mary Lou

Carmell

02-09-2006, 04:12 PM

I forgot to tell you that Braydon did have a blood transfusion after his a/p fusion surgery as an infant and again after his VEPTR implant at age 6. It wasn't during or immediately after surgery, but by 2 days post-op, his blood counts weren't coming back to normal as well as they should. Within a couple of hours of having a transfusion, he was a completely different child. Very well on his road to recovery. Continued best wishes to you in your research. We'll be watching for updates.

Heidi - quick note to tell you that our thoughts and well-wishes and prayers to you and Sean next week. I know you are a strong person, but worrying about him takes its toll. Know we are with you in spirit.

blackwidow

02-10-2006, 11:10 AM

Hi, Cdhheidi
I hope your son has a speedy recovery! I will keep your son in my thoughts. Take care of yourself and I hope to hear from you soon that all is well with your son.

cdhheidi

02-10-2006, 11:28 AM

Thanks ladies for the good wishes for Master Sean... much appreciated! He is NOT looking forward to these procedures... but he also knows sometimes you dont have a choice! Will continue to check in as I have time...

Heidi

blackwidow

02-19-2006, 10:54 PM

Hi, Cdhheidi
I was wondering how Sean is doing? If he had his procedures done and over with? I was looking through other posts tonight and noticed you posted for someone else today. So I thought about you guys. My son sees his pulmo. dr. this Tuesday and I'll see what he says.

cdhheidi

02-19-2006, 11:38 PM

Thanks for asking,

unfortunately STILL not done. It was postponed till this week as our surgeon was out of town last week. Wed is the the first procedure, with the 2nd being a few days later (not yet scheduled, it will depend on his recovery from the first procedure).

He is making PLANS on how he can trick the doctors into not doing it... he knows one of them is afraid of snakes so thought maybe he could bring a plastic snake to scare him. LOL! He IS a dynamo!

Have a good week!

heidi

blackwidow

02-21-2006, 05:48 PM

Hi, everyone
Well, my son seen his pulmonologist today. The pulmonologist seemed optimistic about my son's lung function. He told me it wasn't uncommon for there to be a chest tube after surgery and that he probably will have some complications but that everything will be monitored and a plan of care in place this time around unlike prior surgeries. Apparently, my son cannot undergo lung function testing because my son doesn't know how to blow air in and out, etc. I asked the doctor how are they able to test lung function on an infant then? Since I read about this. He said they put the infant in a certain type of box it is only big enough for an infant and they perform the test somehow or another that way. So for kids like my son who are severely impaired they have to look at chest x-rays, has he had a lot of respiratory illinesses lately, blood gas level and he wants to check my son's nightime oxygen pulsesac. Also he ordered an echocardiogram to check his heart. I'm assuming that everything will check out okay with that. Still, though I was hoping to have more info. and a lung function test would have been good. I'm still very uncertain about things even despite the doctor's optimism. I know my son has a lot of problems after surgeries and this is a big surgery and to be honest I'm scared for him and still not sure of what to do. Honestly, there really isn't much of a choice which is what sucks the most. The good thing is that his pulmonologist is going to talk w/his spinal surgeon which helps and we'll have to meet again w/his spinal surgeon to talk about the procedure, etc. as well as get a 2nd opinion yet.

blackwidow

02-28-2006, 08:27 AM

I have a couple of questions about lung function? Is there an improvement in lung function after surgery? I remember at my son's dr. appt. with his pulmo that he said no. I also remember what his spinal dr. and ortho had told me that after the surgery he could be worse off lung function wise. One of the dreaded possible risks of surgery. Also I've been wondering about my son's apnea for awhile now it started a year ago. Although his curve was much smaller then 6 months ago at 40-45 degrees don't know what it was a year ago since he was not being followed by a spinal dr. The spinal dr. told me then the curve wasn't big enough to affect his lungs yet I've always wondered despite what he said. Since he had several tests to rule out other things. They said it was a central apnea affecting his brain. My son does have brain damage but he has had no trouble with his breathing all this time until about a year ago. I thought it was related to a bad respiratory illness that he had and caused damage to the lungs but this isn't the case. I guess my question is, does anyone feel affected respiratory wise by their scoliosis even though they have a small curve?

cdhheidi

02-28-2006, 08:39 AM

Good Morning!

Some kids have worsening lung function after, some have improved. In Sean's case it sadly worsened, a little, as after his first fusion is when he had to go back on O2 24/7 instead of just at night. But if we had not done the surgery I truly believe he wouldnt be here anymore, so it was worth it. After his 2nd fusion it improved for a few months, he LOVED going several hours each day without the O2! How's that for a mixed bag. Is there any way for them to do a VQ scan? Sean's first VQ when he was 5 they sedated him for it so that he would stay still. (no intubation, just a mild sedation).

Sean has both forms of sleep apnea, and that is one of the big reasons he is on Bipap at night. About 6 months after his first fusion we went for a recheck at the pulmo's office (we live in Idaho, she is in Seattle) and found that his CO2 levels had increased, in addition to other symptoms (crabbiness, sleeping more, that kind of thing). She got him into a sleep study 3 weeks later, usual wait at that time was several months. He had a 2 night study, one night on his own, and the 2nd night with a bipap machine. The difference was astounding! He hated the machine, but after he settled down he only woke one time, and after we left the hospital after the test he told me that it was the best nights sleep he had EVER had. He started wtih the machine at home a couple of weeks later and we could not be more pleased with the results for him. Granted, he has to have a sleep study annually now, and his pressures have increased a few times over the 3 1/2 yrs. We know because of his issues that eventually he will have to be trached and vented, but we are hoping that the vent will only be at night with plain O2 during the day.

By the way, Sean had his surgery last week, and at this time he has no central line for the first time in nearly 9 yrs. It is an amazing thing when you have lived with something like that for so long to no longer have it! We realize it may be temporary, but we are loving the fact that we can relax, just a little bit. (he is on coumadin, so we had to be VERY vigilant about line breaks in his IV in case he bled out).

Hope I helped, a little!

Heidi

blackwidow

02-28-2006, 10:21 AM

Hi, Heidi!
:D Happy to hear from you! Terrific news about Sean! I like to hear when things go well for these kids they deserve a break! I hope he continues to do well! You know it is strange about Sean's lung function after the 1st surgery being worse and then after the 2nd surgery being better. You wonder why? One of those medical mysteries I guess. I don't know what a VQ study is ? You and Carmell are always challenging me with the medical terminology, ha! ha! You know what the funny thing is, is that I'm a medical transcriptionist but my speciality is pathology a whole different set of terminology. I tried googling VQ study to find out what it is but didn't really find any info. to help me. If you could please let me know what this study is and what it measures I'd appreciate it! I know you mentioned they need to be sedated for it so obviously they don't have to do anything physical to perform the test.

cdhheidi

02-28-2006, 10:29 AM

This is a link that explains the VQ study pretty well.

http://www.uhcwv.org/pages/diagnostic/nuclearvq.html

In Sean's case it was done at Seattle Childrens, and we arranged for him to be sedated since we knew he would not be able to hold still for the scans. He was awake for the few minutes where he breathed in the canned air, but asleep for the rest of it.

He will be having another one done in April of this year so that we can compare and see what changes have happened since his first one (a little over 4 yrs ago). This time he will be awake for it, as he has become much better at cooperating when needing to hold still. Only problem is he no longer has the central line, so he will need to have an IV placed for the dye to be injected.. Oh goodness me, I had forgotten about that part! UGH!

Heidi

blackwidow

02-28-2006, 10:46 AM

Hi, Heidi
Thanks for the quick reply. I checked out your link and read it over. I don't know if the lung perfusion scan would really be applicable in my son's case since it looks like it is for detecting pulmonary embolisms. I googled lung perfusion and found a site where they mentioned the lung perfusion scan as well as a lung ventilation scan. The lung ventilation scan may be an option. Since it would tell which areas of the lungs are ventilating. They say it is even used after surgery to tell doctors how well the lungs are doing. I will give his pulmo. nurse a call about it and see what the dr. says about it.

cdhheidi

02-28-2006, 11:00 AM

Sean's VQ actually looked at both perfusion and ventilation... Thankfully he didnt have clotting, he does have what are called blebs all over his lungs. Basically a bleb is like an overblown balloon that cant get back to its un-inflated size. In his case they are probably due to the vents he has been on due to his birth defect and surgeries...

What they can do is see where in the lungs the O2 is going, and where in the lungs it is crossing over to the blood stream. The first VQ he had showed that of HIS total breathing, 13% of the O2 was going to his left lung, and 87% to his right. Doesnt compare to normal people, it just shows his total. It helped us to know that his right lung did most of the work, which is one reason that deflating that lung to do a typical anterior fusion was not a wise choice. Thankfully they were able to do part of an anterior fusion without deflating thanks to our beloved peds surgeon who advocated on Sean's behalf and was there for part of the procedure to show them how to do it.

Heidi

blackwidow

02-28-2006, 11:28 AM

Hi, Heidi
Thanks for clarification about these studies. The pulmo nurse called me back and she will get back to me about what the doc says about this study. I'm hoping it is an option. If not, I will question him the next time my son sees him in May and bring it up with the spinal dr. as well. From what you are telling me it would give some good info. to the docs as well as myself. I'm hoping what the spinal dr. had in mind was posterior surgery but I don't know yet I'm hoping they don't mention anterior. I'm already scared as it is for him but anterior is definitely more involved with having to deflate a lung. Although you mentioned in your son's case they were able to do part of an anterior fusion without deflating. Which is good! I guess only time will tell once I have all of the information.

cdhheidi

02-28-2006, 11:49 AM

There are actually good reasons to do an anterior fusion as well as posterior if it is physically feasible for your son. By doing posterior only, there is a possibility of something known as crankshaft phenomenon, and with a younger child with many years of growing it is something you would wish to avoid if possible. Basically waht happens with posterior only is that the back part of the spine is fused, growth plates killed so no longer grow. The front part of the spine is not fused, the growth plates can continue to grow thus changing the shape of the spine in an awkward direction which can cause further difficulties. In Sean's case they fused the back from about T1-L2, and the front they went from about T4-T8ish by using a part of one of his ribs. Though part of the fusion did not take, (which is one reason he had to go back in for a 2nd fusion and halo traction) the anterior portion of the fusion DID take which I have no doubt helped him from having even further problems than he did.

Crankshaft does not always happen, and if it does it does not always cause problems. Each patient/child is so different, it is important to take each individual instance and do what that person needs. We felt in Sean's case that the rapid rate of growth in his curve indicated that he was probably more likely than some to have difficulties with crankshaft which is why we felt it so important to try to do the anterior as well as posterior.

Make sense?

Heidi

blackwidow

02-28-2006, 12:15 PM

Yeah, I've wondered about the crankshaft phenomenon. The reason why I wonder is because my son has extremely high tone, very rigid muscles. I know it must come into play with his scoliosis. In order to decrease the muscle tone my son had a baclofen pump put it in to decrease the muscle tone. It has only worked somewhat. I'm still wondering what made my son's scoliosis progress so fast I reckon it was inevitable but I figured we would be dealing with this decision when he was a teenager not at 10. There was a study stating the baclofen pump may cause scoliosis to progress in patients. The jury is still out on that one. All I know is that when they did the pump surgery in April 2004 he had very minimal/mild scoliosis there was no problem doing the surgery. Now nearly two years later it is at 70 degrees. But he has begun puberty and probably hit a growth spurt which I'm thinking may have set off this change. I guess I will never know for sure. Well, like I said once I know what type of surgery he is having I'll go from there.

blackwidow

03-02-2006, 09:30 AM

Hi, Heidi
The pulmonary drs nurse got back to me this morning about the VQ study and the doctor didn't feel it was necessary in his case. The nurse told me it only measures blood flow. I asked well what about the ventilation part of it and she still told me no. I don't know what to think? If his spinal surgeon says that he will need anterior surgery as well then I will have to ask this question again when I'm in clinic with my son instead of over the phone. Certainly, I want to know which lung is doing more of the work. Then again, it is like you said everybody is different.

My son had his nighttime pulsesac study last night. He was alright when sleeping on his left side I didn't wake up to any alarms. His best was 95-96 and would drop down to 88-89 and then come back up again. But when I heard my son up at 4 pm and I changed his position to him lying on his back with the head of his bed elevated. Then the alarm went off several times. He was dropping below 85 the lowest I saw was 81 it could have even been lower at some point. I didn't really fall back to sleep after that and got up at 6:30 to get him ready for school. I think there has been a change since the sleep study last May. He was sleeping on his back for that study and he wasn't dipping that low. I'm pretty concerned about it. My son always maintained 100-99% when healthy. It doesn't seem to be the case anymore. I'll have to see what the dr. says about it. I decided the BiPap wasn't going to work for my son because he hates anything on his face (masks and tubing). He just doesn't know any better to keep it on. I'm wondering if he may need a little oxygen at night now.

I'm also waiting for results of his echocardiogram which was done yesterday. It looked like the tech checked more that just his heart. She was checking his lungs as well as his upper airway.

cdhheidi

03-02-2006, 10:14 AM

I have to say YIKES on the O2 levels at night. Yes, I would say he definitely needs O2 at night, and frankly, he may also need the bipap. I know it is really hard to get them to wear it, but it is worth a try if your sleep docs think it might help. Sean has a severe oral facial aversion, it is only this last year that he finally was able to allow the dental hygeinist to clean his teeth without having to go to the OR under a general! It took some doing, but he DID get used to the bipap, and realized all on his own that it helps him to sleep better and feel better. Did they try him on it when he had his sleep study? sounds like a new sleep study is definitely in order...

At our elevation (2800 ft) they want to keep him at 92+ during the day and 94+ at night. at a lower elevation they would want it higher than that, and a higher elevation they would allow it a little lower.

Keep me posted

Heidi

blackwidow

03-02-2006, 10:42 AM

Yeah, I figured you might say that! I see that I'm not overreacting about the oxygen levels. Honestly, I can't even remember if they used a BiPap for the study or oxygen? He may have had a little oxygen that would have changed things a bit. I'll have to find out from his doc. It worries me that this is his presurgery state those levels will certainly fall lower after surgery. UGH! Certainly, I'm thinking his scoliosis is starting to affect his respiratory status. I haven't tried the BiPap with him yet the doctor offered it as an option and I declined since he was mainting good oxygen saturation at the time. Things look different now. I think he'll have to give it a try. If he can't keep it on then at least I'll know I tried. The oxygen maybe a litte bit easier since it is a tube he won't like it but I think he has a better chance of getting used to that. Yeah, Hunter has trouble with the dentist too but he has gotten better since being older now. He used to fight the whole time the dentist was cleaning his mouth now it isn't quite so bad. They never had to sedate him for it which is good.

I had a question, did Sean have apnea before his first fusion surgery?

cdhheidi

03-02-2006, 02:28 PM

Sean did not have his first sleep study until after his fusion, so I dont really know if his apnea was present prior to it. Because he has mixed (both obstructive and central) I would not be surprised if it were there prior to the fusion though.

If he does end up needing O2 and/or bipap at night, make sure you give him time to get used to it. Our machine has a taper mode, where the pressures start really low then over a 20 minute period slowly increase so it doesnt start right off the bat being high pressure helping him breathe. Also, especially with kids with oral/facial aversions you need to give it time for them to get used to wearing the mask. In Sean's case it took him about 2 weeks to be fully comfortable with it, but in other kids I ahve heard it take several weeks. We started off by giving rewards for keeping it on for half the night, or for not fighting me when I was putting it on, stickers, that he could save up for bigger rewards. You need to find what will work for your son, and go with that to help him make the right choices, you know? If it would help, I can send you some pics of what it looks like, and I know that Sean would not mind emailing or sharing if you think that would help, since they are similar ages.

Hugs, heidi

blackwidow

03-02-2006, 02:42 PM

Hi, Heidi
I PM you.

Carmell

03-02-2006, 02:59 PM

Hi,

I can't add to the info Heidi has given you. I'm just glad you are getting this sorted out before making any scoliosis surgery plans. It is very important to have his entire medical history in mind when choosing the right procedure. Good luck and keep us posted. I hope you can figure all this out for him.

blackwidow

03-02-2006, 03:09 PM

Hi, Carmell
Thanks for your continuing support and checking in to see how things are going. :)

cdhheidi

03-24-2006, 11:13 PM

Blackwidow, you have mail

blackwidow

04-05-2006, 09:19 AM

Hi, Cdhheidi and Carmell
I know it has been awhile since I've checked into the site. Heidi, I noticed you posted that I have mail. But I don't see any private messages in my box I also didn't get any email from you. I'm not sure if it got lost? How is Sean doing? I hope things are continuing to go well for him. Let us know!

Hunter was put on a 1/2 L of oxygen at night since he had elevated carbon CO2 levels in his blood. He hasn't had a repeat blood gas as of yet. But no BiPap.

I have met with two surgeons now and now comes the decision of where it should be done. I like both of the surgeons. But my main concern is the postop care. The Children's Hosp. here in Milwaukee that my son has been going to for 10 years has been somewhat of a nightmare especially with that last surgery he had. I have a lot of reservations of doing it here since I still feel like things are a bit sketchy as for his post op care. The other surgeon I went to for a 2nd opinion is in Madison about 1-1 1/2 hours drive from home. I liked him as well and he was clear on Hunter's plan of care post op. Both places have pros and cons. I'm a little hesitant in going to a hospital that my son has never had any treatment before and none of his other docs are there. So he would be starting fresh. Plus, it is a bit of a drive from home but I suppose not too bad. But with the other hospital here in Milwaukee I feel so negative about that I'm not sure if I can deal with it again.

As for the surgery both docs want to do a posterior fusion nothing anterior. Just the instrumentation differs. One wants to use hooks and wires. The other one wants to use the segmental screw method. I'm not sure if one is better than the other? Any thoughts would help? The 2nd opinion doc said it is a matter of the surgeons preference. He will be fused all the way down.
I'm starting to wonder how I plan on lifting him once he is home. I won't be able to lift him by myself. I don't even know if I'll be able to use a lift right away since it is like a sling. The doc mentioned a two person lift. I may end up needing to get an aide or perhaps a neighbor can help me when I need to lift him.

I have a surgey date at the end of July penciled in for him here in Milwaukee.
I don't have anything as of yet out in Madison it would be around that time as well June/July. They apparently book up fast in the summer. I did speak with a parent about the surgeon here in Miwaukee and she is an ICU nurse there as well and she had nothing but good things to say about the doc. I just got a phone number of a parent for the 2nd doc out in Madison and I'll be speaking with her soon. So I can get a better idea of how things are at that hospital. I hope this will then help me come to a decision.

cdhheidi

04-06-2006, 09:27 AM

Somehow my mail got lost to you... I am sorry about that... I dont remember all that I had in it at this point. I think what you need to do is maybe make a list of pros and cons for each hospital, and then go with your gut. Speaking from experience, having a child at a "new to you" hospital is hard to deal with, but sometimes it can be for the better. If they are going to work with you in a team approach, that would be helpful (as in getting all of the various specialties who will NEED to be involved... my Sean was evaluated by ortho, hemoc, pulmo, cardio and anaesthesia prior to his halo traction and fusion 1 1/2 yrs ago)...

Anyway... I wont be able to write much for a while. We have found out that my son will need to have his superior vena cava reconstructed or replaced, and our local hospital is unable to do such an advanced procedure. Assuming they agree, we will likely be traveling to Boston in the next few weeks to have this done. Essentially it is an open heart kind of procedure, so I dont know when we will be back.

Take care, and know I will be thinking of you and your son, and your decisions in dealing with this surgery this summer.

Heidi

blackwidow

04-06-2006, 10:13 AM

Hi, Heidi
I am so sorry to hear the news about Sean. Please give him a hug for me and one for you too as well! Honestly, I can't imagine what you guys must be going through. You have my email address if you ever need to talk or vent. I will keep Sean and your family in my thoughts and I hope Sean gets through this with flying colors. :) He's tough!

I've done what you had mentioned making a list of pros and cons in my head but I still haven't come to a decision. It is tough I go back and forth I'm just not quite sure. Unfortunately, I don't have a gut feeling either way. Like I said hopefully once I talk to this parent in Madison I'll be able to come to a decision. As well as take a tour of the hospital itself.

From what the doc said in Madison it sounds like a team approach. He would be seen by the necessary docs before the surgery. Also a presurgery appt. a month in advance as well as meet with anesthesia and pain management at that appt.

As for the missing email I did get Sean's pictures of the BiPap if that was what you were referring to. I did send you a private message or an email I can't remember which perhaps my mail to you got lost. If it was something after that I didn't receive anything.

Well, Heidi I wish you and Sean the best and take care of yourselves. :)