United Brachial Plexus Network, Inc.

2 weeks ago our friend, who is also a pt, told us we needed to get an xray of Stella's head because she thought it was very flat and there was a possibility of the plates fusing(she looks away from her bpi arm because of the bruises the doctor put in her neck/shoulder). The xray showed an abnormalty so we had a ct scan. The ct scan showed that the plates were not fused, but there was a cyst or tumor on the right side of her head. So Stella had an MRI Wed to check on the tumor/cyst on the side of her head, and since she had to be sedated for that the doctors decided to do an MRI for her brachial plexus area as well. Well, they still don't know what that the head thing is, but the MRI showed that 3 of her 5 brachial plexus nerves have damage. 2 of the nerves show possible tears-the ones that control the tricept and bicept, and the one that controls her wrist extender is possibly torn away from the spinal cord. Because it is important to get this taken care of fast before the muscle has a chance to die, today Stella's surgery was planned for Sept 26th. That's 1&1/2 weeks away. We are very much freaking out, we didn't think she'd need surgery(I may have "selective hearing" when it comes to my baby having surgery, but also, it really seemed like she way finally making improvements...well, at least moving a little!). I am in complete denial! Does anyone have any words of wisdom, advice, experience, anything about this surgery?!?

Her head surgery will be in 6 months if the ct scan shows more growth/the same, even Dr Park, who supposedly has people coming in from all over to see him has said that he's never seen anything like this. Hopefully it will just go away. The 2 surgeries are both pretty lengthy so the risk of general anesthesia is too high for a baby to undergo them both at once as originally hoped.

We had hoped to see Dr. Nath for a 2nd opinion in Oct., but the PA said that if we had hope for any movement in the wrist extender we need to do this surgery asap. I know Dr. Park is the more conservative Dr. of the 2 as far as surgery is concerned, so I suppose if Dr. Park say surgery, he's probably right.

Sorry I'm rambling, I don't know what to do. During the MRI Stella had to be sedated, it was horrible, took 3 nurses and 4 tries to get an IV in and not "collapse" the vein, poor baby was hysterical, and I wanted to loose it too, but couldn't while holding her down. How are we going to make it through general anesthesia and surgery? Especially if it has to be twice in 6 months. She is the sweetest baby. I worry she's being traumatized by all this hospital/procedures/people messing with her stuff. All day and tonight she wouldn't sleep unless she was being held. My husband would try to put her down and she'd scream, she sounded so scared. She useually doesn't fuss. I think she was scared and messed up by this crazy week. OK, I'll stop going on now, I'm just so scared. I really would love to hear about anyone's experiences. Thank you.
Erin

Erin,
When my son had primary 7 1/2 years ago, I felt the same way as you. I thought the trauma would be too much for the both of us. They came in and gave him some medicine that made him sleepy. I believe they put the I.V. in in the O.R. after they put him to sleep. He was 7 months old....he went right with the nurses and anestesiologist without a fight. After 10 hours of surgery he came out and was fine, a happy little guy......he wanted mommy, why of course and french fries.....no bottle would do for him (my husband was eating fries and that is what he ate) ....he didn't get out of surgery till about 6:00pm then he fell back asleep by 10:00 and he was out till 4:00 am. He woke up and was back to his normal self. WE went for the splint and they were wonderful. Truly, I felt it was going to be horrific, but it wasn't.....we both survived. Good luck and keep us up to date GAYLE

Erin,
You can ask for a mild sedative BEFORE any of these procedures/tests when you think your child needs it;even INSIST on it 1st. We parents must be assertive & proactive about mild sedatives BEFORE they start doing stuff to our children.
Here's hoping all he best for your daughter AND I will be praying for you all.
HUGS and Prayers,
Carolyn J


Message was edited by: Carolyn J

Erin, thats so much to process in such a short amount of time but think of it this way, you are helping to give your baby girl the best possibly recovery. She will still be your happy little girl after the surgery, it just might take a little time or her to adjust. As for the trauma, I know I didnt have surgery as a baby but did have a broken left arm and a bpi in my right arm from the delivery and I honestly do not remember any of that now at 19 years old. The farthest back I clearly remember is my third birthday, after that would be the trial when I was about 3-4 and then nothing until kindergarten round up. We learn so much as young children that I think there is an over load of info and the medical stuff is often not remebered so young.

This surgery might take some adjusting now but think about her future! I have not heard of a bad primary surgery yet, and I have been on these boards for this is 6 years. I started visiting this site when I was a ninth grader and now I am a sophmore in college.
She will thank you in the future for doing what you could now.
Surgery is a lot to process but Stella will do wonderful! We are fighters!

Just so you know my background I have a ROBPI and have had 4 surgeries to date. My surgeries were at ages 6, 10, 12, and 18. Honestly all you can remember from the surgerie sare the casts/splints after and as you get older maybe therapy and some pain. I dont remember any pain after my first and third surgeries. And probably would have been pain free after my last surgery had I taken some time off work. My surgery was on a Tuesday, got home on a Thursday and I went back to work the next Monday, not my smartest choice.

I have also had two unrelated surgeries and dont really remember them either just the rehab after one of them.
I would not think that Stella will have any problems with this surgery.
Just love her like you always do and she will do great!!!
Big Hugs,
Amy 19 years old ROBPI from MN

When our daughter had her primery surgery I my self was in denial, We had Dr.T.S.Park yes park waits till close to the last min. to make sure the child won't move there arm on there own, he did the CT & MRI and it showed damage/ scar tissue, then when he got in doing her surgery, he scraped off the scar tissuse and the nurves were disconnected. Here it is 3 years later and Angelina is looks and uses her arm more "normal". So the surgery was went great, she is doing so much better, but it was very hard on both of us though the whole thing. watching your child go though surgry has got to be one of the worst feeling mental and body wise ever! God Bless & Good Luck

Erin,
I know I was so scared when it came to Alyssa's first surgery. I took her (age 10 months) in for the pre-ops and the doctor told me that if I calmed dowm so would she (even to this day shes 6yrs old now she feels me all of my moods happy, sad, scared, nervous.. you name it), she would and still does "feel my moods or worries" and her mood or behaviors reflect them. I have really had to work on this. For her first surgery the doctors and nurses agreed to let me give her the sleeply medicine in the waiting room, then they took me and her to another room and let me hold the gas mask with bubble gum smelling stuff coming out and let her go to sleep in my arms, then they took her to the operating room and put the IV's and everything else. Talk to your doctor about this, knowing that I could do all of that really calmed me down which meant she was calm.

Best of Luck for all of the surgeries and hopefully all will work out

Laura Barnes

Erin, you and your family are in my thoughts and prayers this week I hope everything goes wonderfully!

If you need anything at all you please contact me!

Let me know how everything goes and try to keep your head up!
Big hugs & hopeful thoughts!
Amy

Erin,
I am praying for you all too this week. Yes, Please post & let us know how Stella is doing.
HUGS,
Carolyn J
Adult LOBPI

Erin
I'll keep your family in my thoughts and prayers this week.
Kath (adult/robpi)

Thank you all so much for your responses and well wishes! We all really appreciate it, I am so happy to be able to post here, thank goodness for UBPN message boards, and all the people on it!