Mama LewisAND THE AMAZING ADVENTURES OF THE HALF-BRAINED BABY

16 Comments

1. 

   Clara January 13, 2013 Reply

   I would make sure to ask what types of precautions she'll have after the surgery- things/movements she shouldn't do, how long those will last, and how they propose to keep May from doing those things since she won't understand that she's not supposed to. Some precautions are just to be on the safe side and some protect against things that would require a surgery to be done all over again, so they're important to know. And I imagine knowing them in advance (if there are any) might give you time to think them through and prepare accordingly.

2. 

   Madgew January 13, 2013 Reply

   I am hoping it will go so easy you will be amazed, Here adults are up and moving the first day and every day after. Some go home in just a few days. As May is resilient, young and strong in many ways, I am hoping they will have her moving soon after surgery. My big concern would be with the anesthesiologist and ask to sign up one that is the best with young children, and not take no for an answer. To me he/she is the most important person in that room and I would not leave that choice to others. Find out who does the most and make sure he/she is assigned to May's surgery. You are so proactive I am sure all will go well.

3. 

   Cousin Michelle January 13, 2013 Reply

   I have many adult patients who have had hip surgery so this is my take on this: hip surgery can result in blood loss, can family members donate prior to surgery and have it held for her? Usually patients go to live-in rehab for a few weeks for intensive physiccal therapy. This allows best outcomes. Where will she go, who will be with her, for how long? If she is at home, how many times a day will someone come to the house for PT? I agree with the concern about anesthesia, but would expect that her anesthesiologist is pediatric trained. And as with all surgeries;what is the expected outcome? Risk? Expectation if she does not have surgery? Generally pain is not resolved with surgery, but I expect that she is having this for mechanical issues. Good luck. Kids usually pull through better than their parents. Ask me about Ben's surgery next time we talk!

   • 

     Mama Lewis January 14, 2013 Reply

     I will be reading these questions out in the meeting Michelle! I hadn't thought about donating blood. That is something I would definitely do. And I'm not sure what kind of rehab will be on offer. (At the meeting they said we would be taking May home, not going to residential rehab - but people will come to our house.) Thank you also much for these suggestions. I hadn't thought of any of this.

4. 

   andrea madian January 14, 2013 Reply

   Not sure about the rest but in USA you don't need a pediatric anasteiologist can't
   Spell it but my soon to be ex husband:( is one. He is a good man and doc:)
   He does all ages but as I understand it here the needs for peds speciallt
   Is 2. My son has been under more than I like and he has always been
   Fine. Wishing your family all the best.
   Andrea

   • 

     Mama Lewis January 14, 2013 Reply

     May will be at a specialist children's hospital - both her hip surgeon and anaesthesiologist will be pediatric specialists.

5. 

   Adrianne January 14, 2013 Reply

   • How long will she be on the waiting list? What are we "waiting for"?
   • How old will May be by then? Will she better, worse, no different? Again, why are we waiting? Does she need this surgery or not?
   
   (I seriously feel like a Mama Bear in asking these two questions ... you're going to be a meeting to see if May is well enough to be put on a waiting list. That seems like BS to me. If she needs the bleepin' surgery, why is she being put on a waiting list?!)
   
   • How will the anesthesia effect her? How will you be making sure that she's safe, as I understand it's the anesthesia that is the most dangerous part of surgery for young patients?
   
   I had corrective eye surgery at 4. It occurred to me last night that it'll be 30 years ago this year. Every time my eye doctor sees me, the very same one that did my surgery, he says the same thing -- "I did a damn fine job on that eye! I cannot believe how young I was." :-)
   
   Adrianne

   • 

     Mama Lewis January 14, 2013 Reply

     May will be on the waiting list for six - eight months. She isn't in pain at the moment so we aren't particularly anxious about rushing her. As far as pain relief, I have another meeting about that on Wednesday and there will be further meetings to ensure everything May needs is in place and we recognize her pain accurately. And, thank you for your eye story as well! I need to hear positive things too!

6. 

   kmom January 14, 2013 Reply

   Back in the day (twenty years ago!) many kids that had hip surgery (particularly for those that had a hip that the joint was the problem) came out after surgery in a big cast: down the leg and up above the belly button. with a cut out area (never big enough) for a diaper to be carefully stuffed in. Sometimes casted with legs in frog-like position.
   Not easy to deal with. You will want to know if she's likely to be casted or go home with a brace to be worn until it heals.
   
   Is there a parent that would be willing to talk with you that has had a young child go through a similar proceedure?

7. 

   anne January 14, 2013 Reply

   The two things I would ask about are first a course of presurgery antibiotics. These are commonly given to help prevent post surgical infections. The last thing would be getting her medication plan pre and post surgery in writing. Should her daily medications be given as normal? Will any of her daily meds interact negatively with the drugs given pre, during or post surgery. How will May's seizure medications be handled. Will she need to be weaned off a regular medication prior to surgery. These are all things routinely covered during the pre-op conferences but with so much information parents can be overwhelmed with information.
   
   If you can, write out your questions and take someone to the appointments who can take notes for you. This person does not have to be a family member. You are looking for a human recording machine, someone who can stay calm (or help you stay calm) then accurately report back to you after the meeting. If this person has your list of questions they can help make sure all your questions get asked if things get off track.

   • 

     Mama Lewis January 14, 2013 Reply

     I asked about May's seizure meds and other drugs - and they seemed to think that there wouldn't be any problem administering anything she currently takes along with antibiotics and pain relief. She doesn't need to be weaned off anything - thank goodness!

8. 

   Jenny January 14, 2013 Reply

   Hi,
   
   My son had this hip surgery 2 years ago. In fact just last week he had the hardware removed that was placed in his hips at the time of the original surgery. I just want to let you know that we are glad we did the surgery and it has really helped him. That being said, it is a very difficult thing to go through. It is very painful and we had to make sure they gave our son enough pain meds. It was hard to watch. We were in the hospital for 4 to 5 days post op. Austin had his surgery at St. Louis Children's Hospital in MO. It is one of the top hospitals. They now just cast each leg near the hip and have a bar that keeps the legs straight. They used to have the cast cover to the belly like a previous comment on here says. I would ask that she be able to have the cast the newer way. For clothing, as a girl, you could just put her in comfy skirts. We had shorts that had Velcro on the sides because the bar between the legs keeps pants from being worn. Also, you will need a good wide car seat to bring her home in. We have the special needs Britax car seat and that worked great. We had to rent an adult wheelchair and just prop him up with pillows. His legs with the cast and bar were too wide to have him sit in his regular wheelchair. I will try to find a pic of him in the cast and send it to you. I hope all goes well and if there is any questions I can try to help you with from our experience with it just let me know. Take care.
   
   Jenny
   
   mom to Abby 14, Amber 11, and Austin 8 (severe brain injury, cp, seizures etc..)

   • 

     Mama Lewis January 14, 2013 Reply

     Thank you Jenny! Actually they are doing a pretty thorough pain assessment of May. I have a meeting about that on Wed. You suggest some really good information to ask his team about as well. I hadn't thought of the wheelchair and car seat after.

   • 

     Mama Lewis January 14, 2013 Reply

     I asked about this today and May will not be in a cast, so she doesn't need special clothing exactly, but comfortable clothing that is easy to take off and on will be necessary.

9. 

   Emma January 14, 2013 Reply

   You can get car seats on loan that are suitable for children who have a spica cast after hip surgery - here's a link for one http://www.incarsafetycentre.co.uk/hipspica.html - but it's yet another cost. The hospital might have them to loan or know where you could get hold of one cheaper.
   I wonder if May will be given a spica, some hospitals use them after hip surgery, but others don't - I think it depends on the consultant. I've been looking into this for my son whose likely to need this surgery at some point too. Good luck with everything today.

   • 

     Mama Lewis January 14, 2013 Reply

     Turns out May's car seat is fine. Lucky for us! Thank you for this question, which I asked about. May will not be in a cast and so doesn't need anything specialized.