New with lots of questions

[momof5]

Laurie,

Just wanted to encourage you to hang in there! We are kind of in the same boat. Now that Dr #2 says Graham may not need surgery we are back to looking at alternatives - not knowing if anything will help.

I just figure someone bigger than me is in charge and knows what's best.

Please keep us updated.

Katy

[LeaEvelyn]

Hi Laurie ,
Boy, nothing is easy in life, is it? Have they given you any indication if they want to postpone his surgery in May? You said the monitor isn't catching his heart racing. Has he ever felt it do that, since he has worn the montor? I bet it is very hard finding a pediatric cardiologist. Hope things get better for yous. You'll be in our prayers. Take Care, and keep us posted, OK.
LeaEvelyn

[lnetzer]

Thanks!

Just wanted to say thanks again for the support. It means alot that I have you folks to talk to :-) Today the place where we had the monitor set up in town called and said the pediatric cardiologist had enough events recorded to make some kind of determination, but that we would have to talk to that office directly. We had to turn the monitor in and now I will call first thing tomorrow to see what is going on. I've waited a week for a call back before for this place, so I don't anticipate having answers again any time soon. I do need to know something though as we are set up for that 1st blood donation this coming Thursday. I can't imagine what you are going thru now that the surgeon has said Graham may not need surgery. I keep playing that in my head now, too, that how can I let this happen to my son and stop his spine from growing when he clearly would grow so much more. Lots and lots of prayers and I'm hoping to know more soon....about everything :-)

I wish everyone a happy and blessed Easter!

Laurie

[Jacqui]

Warning about letting children visit siblings!

About letting younger (or older) brothers and sisters visiting patients in the hospital:

When I was in for scoliosis surgery last year, I was on a lot of drugs. I was hallucinating and kept seeing things in the room that didn't exist. I was convinced that the I.V. pole was a person watching me. My older brother came to visit my on the third or fourth day (I don't even remember this). Supposedly I got really upset and yelled at him. I have no idea what I said, but it certainly scared my brother (who was 17).

All that I'm saying is, if you let the older children visit their brother/sister for a short time, warn them that he/she might be different in more ways that just physically. I wouldn't recommend having the younger children visit their sibling. They might not forgive their brother or sister for saying things induced by the drugs. After all, their sibling will be home in only 5 days-a week, and back to normal soon enough.

Best of luck!

[lnetzer]

Another brick wall!

Hi everyone. Today we went to our cardiology appt to find the results from having worn the event monitor for over 4 weeks. We are told everything is normal, all of his heart rhythms were normal, just that Josh's heart races like he was exercising when he is sitting still in class. We were told it is anxiety, but an ultrasound is scheduled for next Thursday of his heart to make sure there are no structural abnormalities. The doctor did OK Josh's starting his blood donation today though. So we went to that appt. 3 hours later and waited for 40 minutes while they checked his blood, etc. and we were refused as his pulse rate was higher than what they will accept. They said it didn't matter what the cardiologist said, their head director for the Red Cross in Madison, WI was called and what he said goes as they work under him, not our cardiologist. They also cancelled our appt next week too because now they won't touch him until the results from the heart ultrasound are known. This leaves us with probably not enough time to donate 3 units as the surgeon is requiring. I'm wondering with this new set of roadblocks if God is trying to tell me something and maybe we should not do surgery? I know we have no other options as his curves are 77 and 55, but I guess I am completely frustrated again I did put in a call to our surgeon but haven't heard anything. The cardio is calling her as well. Yikes.....what a day!

Thanks for listening!

Laurie

[momof5]

Wow Laurie!

How incredibly frustrating this must be for all of you! I think you are right to remember that God is in charge. We are kind of at that point now, figuring that God has a different plan for Graham's treatment, whatever it may be. I am just trying to follow along. It's so hard to not be in charge

This must also be very difficult for Josh. I'm sure you are all concerned that something else is going on. It must be scary for him to feel his heart racing and not know why. We will be praying that you have some answers soon.

Katy

[flowerpower]

Hi Laurie,

Glad to hear everythings normal so far - I understand how much anxiety Josh must be going through with all this. If Josh is unable to donate blood for himself, perhaps you, dad, or other family members who may share the same blood type as Josh can donate for him? Just an alternative -

Renee

[lnetzer]

Hugs to Katy and Renee:

It makes me feel better to know I've got other people to talk to about this. I was very gung ho at first with everything and now I don't know what to do. The Red Cross refused already for either of us to donate for Josh, they said it had to be his own as that is what the doctor requires. We are all the same blood type so I don't understand that. Hopefully once the results are read from the ultrasound of Josh's heart tomorrow we will know more.

Thank you for your prayers. I know God is in charge and it is hard not to want to take control.

Laurie

[flowerpower]

Hi Laurie,

I know all these little setbacks can be frustrating, you just have to keep plugging along. When it came time to donate blood for Joe's surgery (this was through our local blood bank), the doctor indicated on the form for autologous (Joe) and directed donor (me & hubby). Joe almost wasn't able to donate for himself b/c of a recurring strep infection and he had to be off all medication and virus-free at least 24 hours before donating. We had to get clearance from the (blood center) head director also before proceeding with Joe's donation. They are and have to be extremely careful, which is a good thing. Anyway, I wonder if Josh's doctor would/could put in a new request so you would be able to donate. Maybe this would ease (even a little bit) some the anxiety Josh is feeling. These kids have to go through so much already Please let us know the ultrasound results as soon as you're able.

I hope and pray everything will be alright. You are right - God is in charge. Keep up the faith and look to Him to help guide you through this.

Take Care,

Renee

[LeaEvelyn]

Hi Laurie,
I hope things have gotten quieted down some in your life. Hey, how old is your son? Mine was thirteen when he had his scoliosis surgery done. I looked into donating his blood through the Red Cross too. But they had so many restrictions, that it would have made it very diffucult for us. We ended up going right directly to the hospital where the surgery was to be. This made it easier for us. It was a four hour drive both there and back. But we found it well worth it. We had no problems, he had to donate two units of blood. We went every other week, with the final donation two weeks before surgery.
We were real hesitant to have this surgery done also. He had so many more years of growing left to do. Our doctor reassured us. He said that any growth in his spine (which wouldn't be much at his age), with the degree he was (57*) would not be height. His spine would only twist more. He gained two inches from the surgery, and has grown almost two inches more since the surgery was preformed last year. Please keep us informed on your progress, OK. I hope things are working out better for you. God Bless, and Take Care.
LeaEvelyn

[flowerpower]

LeaEvelyn,

What was your son's Risser measurement at the time of his surgery? Have you noticed any rotation/rib hump returning since his surgery?? When my son had his surgery his Risser was still 0, but his curves had rapidly progressed by the time of surgery. They were at 49T/44L when we scheduled (July 05), progressed to 60T/53L by surgery date (Dec. 05). In the 4 months since his surgery he has grown even more and it seems to me his rib hump is becoming more prominent again. We don't go back to see the dr. til mid-June and this has me really down and worried. Just can't bear the thought of another possible surgery if this creates a problem.

Renee

[lnetzer]

SOME good news!

Hello! We had the ultrasound of Josh's heart done last Thursday and got the results within 2 hours. It pays to go to the big city His heart is completely normal and healthy. The doctor said it is stress and anxiety that is causing the rapid heartbeats as his heart rhythms are all normal, too. So at least we got that good news! BUT, I rec'd a call from the surgeon's nurse on the way to the ultrasound appt. and they rescheduled surgery for July 10! She said they wanted all of the info on the heart business first and even with that there wouldn't be enough time for him to donate his own blood. I'm going to call and ask about the parent donating again, too. So more waiting will likely cause more stress/anxiety, but what do you do? I just don't understand as they were very rush-rush when he was first diagnosed that we needed to have this done right away, etc. I do have faith in his surgeon, though, she is very thorough with all she says and does. I think now that he won't miss the end of the school, he might be missing the beginning of the next as school usually starts where he goes in WI about September 1st.

Just wanted to give everyone an update....by the way.....how do I find out what a Risser score is? We were never told anything like that.

Laurie

[flowerpower]

Hi Laurie,

I'm so happy and relieved for you that there are no problems with Josh's heart!
Bummer that the surgery date has to be put off again, but think of it as more time to prepare, mentally and physically. It's surprising how quickly these kids heal from surgery, Josh may be able to make it to a class or two or half days by the start of the new school year. If not, he could probably be tutored until he is able to attend class.

A Risser measurement - when looking at an x-ray, the area in the hip bones of children are open. As growth occurs, this area closes up/fills in. When you dr. looks at your childs x-ray, they can estimate how much growing is left by looking at this area. A measurement of 0 will indicate there is quite a bit of growing left, a measurement of 5 indicates growth is pretty much complete. Hope this was helpful.

Take care,

Renee

[LeaEvelyn]

Hi Renee,
Shane's risser sign was "0" at the time of his surgery, he was only thirteen years old. He still has somewhat of a rib hump going on too. It is more noticeable when he is bending forward. I'm sure your son is fine. I was told that if they fixed the rib hump and shoulder deformity, it would be a harder recovery, so we opted not to have this done to him. Hope this can reassure you that your son isn't the only one with this same problem.
Take Care
LeaEvelyn

[flowerpower]

Hi LeaEvelyn,

We also agreed with our surgeon to not do a thoracoplasty, we felt the least invasive, the better. It just seems to me the rib hump wasn't as prominent post-surgery as it is now. I know there was only a 50% correction of the rotation, and the way the dr. explained at our last appt. the shoulder blade was still settling over the ribs. I'm just worried that with this latest growth spurt the spine is trying to rotate more. It's probably just me, Joe seems ok, not complaining of any pain or anything.

Take care,

Renee