United Brachial Plexus Network, Inc.

My 10 month old will be having primary surgery next Tuesday the 30th. My question is how did everyones child do after primary surgery with pain? I just have a lot of anxiety about all the pain she may have. Any feedback would be great. I have been so emotional this week, I guess knowing she's going under the knife. Was anyone else this emotional? Friday, I cried during therapy when she held herself on all 4's for 20 seconds. It is just so hard knowing we are starting over. Also, did everyones child get more movement back after primary? Our doctors assure us that worse case senario is the same movement as now. But they did say to expect her contractures to get worse. Has this not happend to anyone? Thanks for the answers!

It is quite understandable that you are very upset right now. Allow yourself to be - cry as much as you can so that you are not holding it in and getting yourself sick. Try to do one thing before you go to bed to destress yourself (bath with some lavender oil in it?) so that you can sleep a bit better...the sleep will give you the strength to go on to do the next day.

NOTE: You didn't mention what hospital you will be at so I can only give you information on our experience at TCH...it may be very different at other hospitals.

After primary they just use tylenol or tylenol with codeine. Maia could not tolerate the codeine and did much better with plain tylenol and one mom on here told us why - because there's alcolhol in the tylenol with codeine so you can actually ask for it without the alcohol in it.

Many parents report sleep disruption for a while. In talking to other parents we thought that this might be happening because they get scared to go to sleep becuase they went to sleep and woke up in pain.

But once all that was over - it was VERY evident that Maia had a lot of pain before primary and that type of pain was gone post surgery. I think it took a month for her.

When will movement come back? Remember that nerves grow at 1 inch a month and they will have to regenerate back from the source once again. It's actually good that the arm is immobilized in the front because it keeps their arm in their eye's view. Also - you can velcro a small toy on to the foam near their fingers to stimulate their fingers.

The reason they don't lose what they already have is because they don't take away what the child already has. As they start removing any kind of neuroma that is there, they are testing with an EMG and they only remove what has no conduction and they leave what has conduction. So the nerve graft augments what is already there. With avulsions - they reroute to another nerve, so there's great possibility with that as well.

Contractures will occur because of the time frames and how the muscle imbalances occur...muscles may get innervated at different rates and they get out of balance. Contractures are just part of life with bpi I guess. They say that if your child has primary surgery, then expect at least one secondary surgery for contractures. But then again - some children don't have those issues (I know of one who just doesn't have ANY contracture issues - lucky duck she is!)

I wish your sweetypie the best and will keep her in our prayers on the 30th. Safe trip, too.

big hugs,
post everyday if that's what you need to help get through this very hard week! we are here for you!!

-francine

I just want to thank you for taking the time to fill me in on all my needed answers as best as you could. We will be going to Childrens Hospital at St. Louis. They have a bpi clinic there. It is so nice to talk to other parents who have been there. Thank you for the prayers, I know she is in the Lords care, but I am just having a hard time with my heart not cooperating what my head knows is a good decison for her long term outcome.

hi again! So I guess you see Dr. Parks? Is Dr. Mackinnon still working with children there? I want you to know that what I said about how the nerve grafting and neurolysis works is how they do it at TCH...so you must ask these questions of your own doctors ok? Also - about the drugs and also find out how your sweety will be immobilized afterward- get a picture of it...so you can be prepared for that.

A bunch of us came up with a list of questions to ask docs...maybe looking at this list will help you figure out what still haven't asked them about yet? check it out http://www.injurednewborn.com/maia/drquestions.html

Also - we have no information about surgeries at ST. Louis... how would you like to put it all on a web page? I have this section on my site devoted to children who have had surgeries at other hospitals. I have currently a page on Sarah who went to Dr. Waters. And soon will have a page set up about Jocey and her gracilis transfer with Dr. Klebuc. How would you like to tell your story and show pictures on a web page? I can do the work for you - all you need to do is give me text and pictures. It will really help other families who go to St. Louis. Would you consider it?? [please?]
take a look at Sarah's page ok?
http://www.injurednewborn.com/sarah/sarah.html

I wish your cutiepie a very successful surgery and speedy recovery!

-francine

Believe me, if there's a mom out there who didn't cry her eyes out on a daily/nightly/hourly basis, I'd be surprised! I cried myself to sleep every night until my daughter had primary at 5 mo. Don't feel guilty about expressing your emotions. That sick feeling in the pit of your chest does go away...

Pain. Our daughter (also a TCH surgery) had a rough time of it. We spent an extra day in the hospital because she was "splinting," which we found out was caused by her taking short, shallow breaths to avoid pain caused by her positioning during surgery. Her bp was high and we weren't going anywhere, let along a plane ride home, when it was so elevated. It did get better and she started breathing normally so we left.
The first day after surgery was rough. She vomited a lot. The alarms they have rigged up to monitor her kept going off so it was impossible to sleep. It's hard to hold her with all the wires/tubes in the way. If you're breastfeeding, that's another thing to take into consideration. Roughest week we ever had. Once we got home, though, Elizabeth was fine. No pain, rolled all over the place (she was in an immobilizer), slept fine.

If I had to do that surgery over, I'd try to sleep better before we even left for surgery. I was exhausted when we left, didn't sleep at the hospital, and came home worn out. I'd try to take a shower at the hospital everyday (I wouldn't leave her side even though Dad was there. Duh. He managed to sleep ok...probably because I worry enough for the both of us!). In hindsight, I would have been kinder to myself and trusted that it would all work out. I don't know if that's possible to do; it's your baby you're handing over.

Let us know how everything goes on the 30th. God bless your baby.

p.s. Francine mentioned a bpi baby without any contractures, ever. That's my Elizabeth.

ohmygosh - karen mentioned something VERY important...about taking better care of yourself BEFORE the surgery. She is SO right!! That's one thing I did was to cancel everything I had going the week before her surgery ( I learned this in time for her 3rd surgery ) and thank God I did that because we didn't get sleep for a long time - so yes TAKE GOOD CARE OF YOURSELF!!!
-francine

My son had his primary at Pittsburgh CH and he became fevered BUT he was cutting teeth. Those doctors gave him tylenol w/codiene but he has a high pain tolerance and when we did get home we gave him the tylenol for 4 days afterward and sparingly after that. I think I hurt more for him then he actually hurt. I hope this helps!!