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    Hello all, I have been reading many posts for 4 months now and I am so overwhelmed! Everyone is so supportive and I thank you all in advance. My daughter Jessika is 12 1/2 and having spinal fussion surgery September 1. She is disabled. Prader Willi Syndrome, mental retardation and slightly Autistic. She is actually excited about surgery. I am worried that she will have a tantrum in the hospital or when we come home and harm herself. Is there help at home? The hospital told me that the discharge nurse will take care of things. So, I wait untill we are about to leave the hospital? Also, how long is the stay? I read that some people take Iron pills, her Dr. never mentioned it. I do not know what Jessika's lung capacity is, but she is not that active. (favorite things are Math workbooks and puzzles! ) What is the test called for this? Her Dr. said that we are not doing a test and to tell him what the test is. She is my sunshine and I want to make sure that this is all right. Her curves are 62 and 40. We have gone to 4 different Dr.'s and they have all said surgery. Jessika takes Growth Hormone injections nightly to improve her muscle tone. Any advice will be greatly apreciated!

    Thank you! ~Jeannie

  • #2
    Hi Jeanine

    I posted this in Anterior and Posterior Surgery, it is just some suggestions that came to mind, I'm not sure because the thread was started by someone else whether you would have read it so I thoughtI would post it here as well :-)

    :The hospital is used to dealing with "standard" fusion patients, what I mean by this is a patient who is "normal" (in the sense of the word) and who doesn't have any other condition and that only standard things need to be thought about (can they shower ok, do they need a toilet seat raiser, what pain medication will they need etc). I believe that with Jessika's special needs you need to start "planning" now about when Jessika comes home. Could you liase with Jessika's "support team" (doctors, therapists , OT's etc) to come up with an overall game plan for when she comes home. Also to help work on Jessika's understanding of what it will be like when she comes home from surgery to the level that she can understand.

    :Iron pills are often prescribed before (or in some cases after surgery), it is to increase or replenish the haemoglobbin in the body from what is lost in surgery. However it often depends on the individual patients case and the choice of the doctor. You might want to ask the doctor if they are needed in your daughter's case.

    :The length of stay depends on lots of factors, the amount of surgery (just posterior or anterior and posterior), the patient's recovery. It is usually about a week to 10 days but it does very from person to person (often 4 days in high dependency care then the rest in "standard" care)

    :The laymans term for the test to check the lung capacity is a lung function test, I think the technical name is a pulmonary function test. Personally I find it strange that he is not looking at her lung capacity (but that might just be me :-)

    I hope some of this helps

    Alison

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    • #3
      Alison, thank you for writting back. I called the orthopedic Dr. doing her surgery and was told that the lung test is not "standard" procedure. I asked for the test to be done anyway. So, it will be done next Wed.. I also asked if Jessika could be admited the night before as she is nervous and I am worried about her behaviors and getting her to the hospital the next day. I was told that insurance does not pay for that. ????? I do not like insurance company's! We have two other daughters to take care of, how am I going to do this? I got an e-mail yesturday from a mother in crisis. Her child with Prader Willi syndrome had the spinal fusion surgery July 22 and is still in the hospital. He has develped and infection in his lungs and the Dr. would not listen to her when she said that our children with PWS have week muscle tone. Now her child has Pnomonia. He is in Intensive care.
      On a better note, we just got back from a Disney cruise and had a blast! A last hurrah so to speak before surgery.
      ~Jeannie

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      • #4
        Hi Jeannie,

        Glad to hear your cruise was great. That helps so much to relieve some of the emotional stress we parents go through. Ugh. I'm so glad you were able to do that.

        About the hospital... Has your daughter taken a tour of the hospital? Many hospitals have planned tours of the hospital to show the patients where the operating rooms are, where their parents will be waiting, where they will be staying after surgery, etc. They also usually have RNs to answer questions. This may or may not help her...

        Will she be having surgery at a Children's Hospital? If so, great. If not, MAKE SURE the anesthesiologist is a PEDIATRIC anesthesiologist. You will want to make sure they know how to handle children who have other medical issues.

        Also, find out what the post-op pain management plan will be BEFORE the surgery. Many scoliosis patients require a bit more pain medication than other patients. Many hospitals have a Pain Services team (anesthesiologists and other pain specialists) you can speak with to find out what the best plan for her will be. You can give them any suggestions that may have worked in the past. Talk to them before the surgery.

        Take a notepad (doesn't have to be big) to write down everything. I write down comments that aren't even full sentences, but it helps me remember everything I need to know. You will want to (especially in the beginning) write down the medications and the times, to keep the nurses on schedule. The pain is easier to manage if the meds are given on time, and the patient's pain is NOT allowed to get too severe.

        Pain and discomfort will likely be the biggest factor for her lungs. If she feels good enough, she will want to be upright more, and will be able to use her lungs more. The more she uses her lungs, the less chances of pneumonia she'll have. Even sitting upright with her legs dangling over the edge of the bed is better than laying flat. Maybe she has games or books or math facts to practice. You could use this to help her (not bribbing ) get moving as soon as she's able.

        Good luck and we'll continue to send our best your way. Braydon will have his next rod expansion surgery (both rods) on Sept. 2, so we'll be thinking of you as we recover too.
        Carmell
        mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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        • #5
          Hi Jeannie,

          It was a good idea to insist about the lung function test.

          My daughter Roseline also has weak muscle tone, and I am reassured that the doctors will know exactly what her capacities are. She had other surgeries, and the exercices are crucial to avoid complications, it can be fun like blowing bubbles or triying to tickle a doll with your toes.

          Physiologist are great at finding ways to motivate kids but you are the one who knows her best so don't hesitate to give suggestions. As long as she moves a bit more everyday.

          About the iron pill. Roseline was denied donating her own blood because of strict criteria (less than 60 pounds, pore medical history) Therefore the doctor said she does not need to take iron before the surgery and he will adjust if needed after.

          Finally, I had the same worry about the morning of the surgery. A nurse suggested that we ask the doctor for a light tranquillizer. Maybe you can inquire about that.

          Good luck with everything! My thoughts and admiration are with you!

          Isabelle

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