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I don't think they get baths right away either, I think they have to wait until steri-strips fall off? Someone whose had surgery at TCH please answer this one-- what's the time frame for the strips to come off?
I found sponge bathing was fine for us, we did it daily and he didn't smell the way I feared he would at the end of it all- but I will say he loved that first bath when we first got home!

Hi Melissa,

Cole had irritated areas as well - he is very fair skinned. We also used Mole skin on the cast in those spots, and it seemed to help. We would wash those areas the best we could as well, and then definitely keep it as dry as possible. Best wishes.

Patty

Okay good right now I don't think I can fathom the thought of immobolizing her for another 4 weeks..yikes!
She is a very independent girl & she's taking this pretty hard, she's not saying she wants it off or anything because she understands & we've prepared her for it but she acts out in frustration way more than before. She started compensating ALOT before the surgery so she's really missing that right arm.

Patty, Thank You! Ashley is very fair skinned too & theres this one spot on her that seems to be very sensitive. Not to mention she was laying on her back for 3 days straight sweating & stuff. She's finally up and about banging her cast into everything lol.

Hi Melissa,

Maia has had surgeries at TCH. To answer your questions, right after the surgery they put her in this temporary sort of cast w/bandage for right after the surgery and then the next day they made the custom splint...while Maia watched a video.

I don't know the differences of why some do casting and some do not. I know that everyone else does casting of some sort, even for the primary.

I guess I'm sorta grateful that we didn't have a cast because Maia has eczema and severe allergies and it was important to be able to take it off to treat her skin and give it a break to air out. PLus she had to wear a cotton undershirt to protect her from the foam interior, so we got a chance to change her undershirt daily, too. I don't know how it would have worked had she been casted. Yikes to even think about it!

We're doing it again in 3 weeks and this time it will be a different kind of splint- also removable. It'll be interesting to see how she handles it at this age and at this time of her life.

Oh yes - you asked about the length of time, etc. She will be in it 24/7 for 6 weeks and then only sleep with it for another 6 weeks.

-francine

Hi, Melissa! Nice to see your name here. It looks like you got some informative replies already. I'll give you a reply from the prospective of a TCH patient.

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At TCH, the typical protocol (most patients; exceptions are made for individual cases) for post-op Mod Quad is that a temp. cast is made and fitted onto the child in the OR while the child is still under anesthesia. That cast is temp. and is for the first 24 hours. The morning following surgery, you follow the BP OT to the splint room in the OT dept. They simply cut off the temp. cast with scissors. Then, while you maintain your child's arm up in the air (for toddlers, a parent has the child sit b/w their legs to keep them still), the OT fits the child for the splint. It's soft plastic that softens in hot water and then hardens. It also has airholes in it which I think is a great idea b/c it can get pretty warm. Anyway, they adhere velcro to the inside and outside of the splint. They then adhere foam padding on the inside (to the velcro) and they adhere soft straps made of velfoam material (or something like it) to the outside of the splint. They try it on your child and show you how to put it on and remove it. Initially, it might seem a bit intimidating, but it's really not bad at all. You get the hang of it very quickly. Some children have difficulty during the splint process, but others (I think the majority) do fine. We gave Nicole Tylenol w/codeine beforehand and she did great. We might not have even needed to give her the meds, but wanted to be safe. Also, during the splint process, which takes about 1/2 hour, there's a child life specialist who helps "entertain" your child. It's pretty neat, they even go through a book showing you the entire process while you wait and they show you a doll that's splinted and will splint a doll of yours if you bring one.

For more specifics of the post-op protocol, you can go to http://www.injurednewborn.com/maia/protocolsec.html.

As far as why there are different techniques, it depends on who you ask! Jamie gave you If you ask most therapists or a dr. who does the splinting process, they would probably tell you that the other drs. do the cast b/c it's "easier" for them to do it. Typically what therapists have told me is that casting is a technique that's been around for a long time while splinting is newer. As Jamie pointed out, we didn't have any worries with the splint on either. If they fall, the splint protects them just as a cast would. Some things that I looked at as benefits of the SOL splint was being able to remove it daily to do some ROM and to keep things clean. To answer your ?, yes, we could do real baths. This starts about 1 1/2 - 2 weeks post op. They want you to keep the steri strips dry for 10-14 days, or until the incision is closed and the strips fall off. Then, you can get the incision wet. The only restriction still at that point is maintaining the arm in the splinted position while the splint is off. For us, this worked out okay. Nicole seemed to understand that she had to keep her arm up and I was able to remove her splint and put it back on myself (but took advantage of help if Troy was around). Also, the splint was very lightweight so she didn't have any problems balancing. She didn't have any skin irritation problems either, so I don't know what to suggest to you for Ashley's irritation. I think the mole skin suggestion is a good idea. We had the OT put some on Nicole's splint too b/c there were some kinda hard edges. Any OT s/b able to get you some. Ask for extra too so you can change it.

Oh and about the post-op protocol, I guess most people adjust to whatever situation they're in (what choice does anyone have anyway?!) and figure out a way to make it work for them. I knew in advance that the post-op protocol was so different for this procedure and factored that into my decision on having Nicole's surgery at TCH. For us, although there was more work involved in the post-op care, it was the method we preferred. I think it's great that there are different procedures out there so people can go where they're most comfortable. I do always recommend to people that they findout about the post-op protocol w/any surgery and factor that into their decision.

You would think that the child wouldn't want to have the splint put back on when you remove it or that they'd want to take it off themselves once they knew it was removable. However, that's not the case. The splint is actually very comfortable and the children seem to quickly adjust to their arm being up in the air like that. I don't know about experiences with the spika cast, but when the 1st 4-6 weeks are up and it's time to take off the splint during the day, many children want it back on and they walk around with their BP arm up in the air for 1-2 days!

I don't know what BCH recommends, but warm water aqua therapy was recommended to us for post-op therapy. I'm sure you were told how important the post-op therapy is with this surgery. We do aqua therapy 2x/wk. The first week out of the splint, I brought Nicole to the pool everyday to help her ease her arm down in the warm water. If you don't have access to a heated pool, then the bathtub will help.

I think the calendar is a neat idea!

I agree that it's amazing how quickly the children bounce back. I couldn't believe it when I'd read that most children were running around in the hospital the day after surgery -- until I saw it firsthand. That's also one of the reasons I want to get any surgery that Nicole needs done while she's still so young. I did see an older girl post-MQ once at TCH and she was having a difficult time managing the pain 1-2 days after her surgery.

About compensating, I was worried that Nicole would get so used to compensating that we would really get set back in therapy during the 6 weeks in the splint. However, I was amazed at how much more spontaneous use of her left arm SHE initiated almost immediately without all the constant nagging. I still encourage her to use her left arm/hand or both, but not nearly as much as I used to pre-op.

Well, this is long -- I read all your posts here and replies to try to cover all the ?s. Don't ever apologize for asking too many ?s. BTW, you can set up the board as auto-login. That way once you come to the forum, you'll automatically be logged in every time and won't have to worry about logging in or out. It's very simple to use the board with that feature enabled. I hope you'll stick around here for a while. I'm glad that Ashley's doing so well with her recovery. I can't wait to hear all the exciting things that you see when the cast is removed. (BTW, fear of the "cast removal process" was also a factor in our decision to prefer the splint.) -Tina

Hi Francine, I'm really glad Maia didn't get a hard cast with her skin problems, I think she would have had a really hard time with it. Ashley is pretty fair skinned but her skin's pretty tough & she already has some real sore spots. I thank you for the info very much. Everyone has been so helpful. Melissa

Hi Tina, I was hoping I'd find you somewhere I've been having so many questions about this surgery recovery & I'm really glad I came here cause everyone has been sooo helpful. I was wondering..."Where is she" I have questions...LOL. Last night was a rough night for us Ashley was up most of the night saying she had itchies on her back & she would only lay on the floor. I felt sooo bad. So she has this very tender area on her right shoulder blade underneath the cast. I put some moleskin over the tape & the redness seemed to decrease a bit. She hasnt' complained today...knock on wood...she'll wait til tonight..like i'm not sleep deprived enough. Theres also a very, very tight spot where theres an indent in the cast thats digging into her shoulder blade underneath where the sore is so I'm trying to contact Dr. Waters to see if Maybe I should bring her in to get this thing looked at. Otherwise she is being a trooper. I think she'll let me take her out this weekend...I hope she seems to be embarrased of her cast..I think she knows its going to attract attention maybe. I told her she is special thats why she has the cast to make her arm stronger & work better & she should be proud. It seems to be working for now we'll see though. THank you for all the info it was extremely helpful. At least now I have an understanding of different things. Talk to you Later, Melissa

I'm sorry I haven't been around too much. Whenever you want to reach me, either post my name in the subject b/c I've been lurking online and reading some of the messages. Otherwise, you can always email me directly too. I just haven't felt too supportive these days as I'm making surgery decisions for Nicole at this time. I hope that doesn't sound selfish. I'm sorry that Ashley is itching. I don't know what to tell you. Maybe her Pediatrician would have a good suggestion too. I'm sure they've seen many children in casts. I don't know how similar the spika cast is to other kinds of casts. I don't think Nicole will have a problem going out in public with a splint on in the near future b/c she's already been through it not too long ago with the SOL splint, plus she's worn various types of little splints most of her life. I will forewarn you to be prepared to get lots of looks and comments. Some people have said that others have even made subtle comments to the effect of child abuse believe it or not. Thankfully, I've never come across anything like that. What I did find though is so many people had the "oh, poor thing" attitude. I understand that their intentions are likely good, but geesh, Nicole does fine with the splint -- it's just the other people who are bothered by it. It would be so much easier if they would keep their comments to themselves. I have learned to never look at a child with all that sympathy when you don't know the situation. As Mary (?) suggested, you might want to have some info. about BPIs available. In the awareness 2001 section of this site, there are BP Informational cards (like business cards) that you can print and have made up. Just an idea. That's something I hope to get done for next time around. BTW, I'm usually around here pretty regularly if you're ever looking for me. It's hard to keep up w/2 boards. I have been thinking of you all daily. Take care.