United Brachial Plexus Network, Inc.

Kaitlyn had her MRI Monday and the whole IV thing was awful but she sailed through the procedure and recovery and was eating and talking 2 minutes after she woke up. She rememebers everything about the IV and says often no more doctor in hand. Meaning we are not doing that again and points to where the IV went in. I asked about the oral but Boston does not do it for kids older than 1. Dr Waters said she bounced back so well because of the IV but she could not walk without falling over for 20 hours. The results were pretty good. Nath had though she might be dislocated but she was not. She is in and tight according to Waters. She was a level 2 shoulder with level 1 being perfect. There is a slight difference in the angle of one part of the shoulder joint. Godd news. She will have to have an MRI again in a year and if that is the same he said she will probably not have shoulder problems. I do plan on sending the MRI to Nath to get his opinion too. It is hard having two doctors in a way- causes doubts. Boston was wonderful with our care and evaluation.

Carole - the IV thing sucks doesn't it? Did they use EMLA cream at all? If not - check it out for any next time you may have. EMLA is a numbing cream that you put on 1 hour before and it numbs the whole area. I tested it on myself before blood work and I made them use a horse needle and route around in there and I didn't feel it at all. You can get a prescription from your doc in advance and apply it at home so that when you get to any place for a procedure it's already numb. (but you have to choose two sites for an IV in case one site doesn't work)

Also - I wanted to let you know that Maia's MRI did NOT show her shoulder dislocation. It was the CT scan that showed the dislocation. We had both done at the same time. MRI said Left Shoulder Girdle Atrophy, CT scan said , Posterior Dislocation.

So maybe you want to ask your docs about this? Also, Dr. Nath told me that the success of a scan is also based on the positioning of the arm - sometimes they position the arm in such a way that a dislocation is normalized for the scanning.

In one way I feel badly that I'm sharing this information with you but in another way I feel compelled to share this with you, because it may affect your daughter.

And in the end, I just truly hope that things work out for the best.

-francine

I'm really glad things went well for Kaitlyn. We really love Boston, and Dr Waters, he's really fantastic and knows his stuff.
I definetly agree on the second opinion though, it can never hurt! We used it ourselves through video-eval.
Good luck! Keep us updated!
I'm going to look into getting the EMLA for TJ's MRI this coming January- sounds like great stuff Francine.

The did use ELma at the MRI in Boston but Kaitlyn hated the clear bandage that held it on. They put it in 2 places and she pulled one off. The IV really sucked I may push for oral next time!

Carole - ask them for some kind of chewable oral - does it exist? Because the oral meds that Maia got taste so bad - the tech told me it would - that maia would NOT take it even with a lollipop there to help get it down and they had to do it in an enema format which if you ask me...the I.V. would have been better than an enema. It was really traumatic to have that done to her.

Nurses out there - can you help us figure out a better way? Is there chewable oral sedative out there? Something that will make this less traumatic all the way around?

-francine

I'm far from a nurse and I don't know how Nicole's oral sedative tasted, but she drank it fine with no problems. Of course, she loves taking meds (too much!) and she's really easy going, but she didn't make any faces or anything indicating that it didn't taste good. Maybe it tastes differently at different hospitals. I'm glad she didn't need an IV b/c that's really contributed to being a difficult part of her hospital stay for her surgeries. -Tina