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Thread: Having a rough time

  1. #1
    Join Date
    Jan 2006
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    78

    Unhappy Having a rough time

    Hi, everyone
    My son went for all of his preop appts. yesterday and everything is starting to hit me like a brick wall. My son's surgery is in less than two weeks now and after talking with all of his doc's yesterday I feel very scared for my son. I was so depressed last night and not doing much better this morning. The surgeon went over again everything that could potentially go wrong and you ask yourself why are we doing this?? I know for my son there isn't much of a choice but it still bothers me I don't want him to be worse off after the surgery or possibly die because that would be hard for me to accept. It is the unknown that bothers me the most. Not really knowing what is going to happen. I know a lot of his classmates have gotten through it and are doing fine now so I keep telling myself he will be the same. But really every kid is different and you just don't know what the complications will be. If there are any parents that could tell me how they got through this time right before the surgery would be helpful. I just need to get my mind in the right place about all of this.

  2. #2
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Hi There
    oh I wish I could come and give you a big hug! I remember only too well how scary the immediate pre-op time was. To get through this time you need lots of hugs and prayers and tears and someone you can voice unreasonable fears to (as well as reasonable ones). I lay awake nights worrying that I wouldn't be able to cuddle G afterwards because she'd be all stiff: just silly and I could forget it once I'd said it to a good friend who didn't think I was nuts! The occasional gin helped as well!
    I don't know what your family situation is but you really need someone to come to the hospital with you and just be with you - make sure you eat and go outside for air and supply you with tissues and that sort of thing. My husband was out of the country (long story) when G had surgery but a good friend came and stayed with me till she was back in the ward post op.
    You just have to hang on and remember that, although you can't get assurances about the outcome, you can be sure that without the operation, he will get worse and his quality of life will be severely impaired. You can't let that happen so you just have to survive this. That's what I kept telling myself before Genevieve's op: there really isn't a choice to make because she needs it.
    All the best
    Lorrie

  3. #3
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Hi, the advice Lorrie gave you is excellent! What you are experiencing is completely normal. Before Jamie's surgery, I couldn't eat, couldn't sleep and had heartburn constantly. I snapped at every little thing. I knew in my heart that I did everything I could to make things go smoothly the day of surgery--took my daughter to four other doctors before deciding on her surgeon, made a printed schedule of who would be taking care of my other daughter, talked to Jamie and reassured her that we had faith in God and in her surgeon--and I was still a mess on the inside. Jamie heard me trying to describe to someone months after her surgery how scared/nervous I was the day of surgery and she looked at me with a shocked look. She said, you sure didn't look nervous that day! That was the best thing I could have heard. Remember, our kids feed off of us and if we lose it the day of surgery, so will they. Try to keep a brave face in front of your child.

    My husband doesn't do very well waiting, so he went to work the day of Jamie's surgery, but my mom was there with me from the beginning. I never left the waiting room except to use the restroom. I just couldn't leave even to get some fresh air. My sister-in-law stopped by during our wait and simply hugged me and held my hand for the longest time and offered to go get us lunch. That helped to break up the day. My husband called me hourly for updates. Also, another reason I wouldn't leave was the fact we got updates atleast hourly from the O.R. Yeah, I know that is almost unheard of, but that's the way our surgeon works. He had a nurse call me every step of the way which really helped.

    I made sure I took a sandwich and snacks with me so I wouldn't have to leave. I didn't feel like eating, but I knew I had to do so to keep my strenghth up for Jamie. Remember to take care of yourself because your child will need you to be healthy and strong. If you can, try to catch a quick nap while he is in surgery.

    Please know that we are all here for you and understand what you're going through.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  4. #4
    Join Date
    Jan 2006
    Posts
    78
    Thank you ladies for the support. It is an emotional rollercoaster ride for sure. Some days are better than others. Sometimes I just feel like I'm a basketcase ready to break down. I'm just hoping I will be emotionally strong enough to get through this one. I think after seeing him through these other surgeries recently it has worn on me. I've seen him go through a lot over the years and it is a lot to deal with. I do have my husband and he will be there with me for the surgery. My family has a lot of problems and isn't much for support. My sister will come to visit but the rest of my family doesn't. Honestly, I don't think my family understands what I have to deal with daily and how much of a toll everything has taken on me. Probably because on the outside I appear to manage everything just fine. I find that the best support I've gotten is from a parent who has been through this with their child. Only they know how you feel because they have been there themselves. I think an important note was made to try to keep your best face in front of your child. Although my son doesn't understand what is going on. Probably best that he doesn't know any better! Since he is a happy kid with positive energy. I don't want to bring my negative energy to him. I know I've told myself that I'm going to need to take care of myself as well eating and sleeping. That is tough whenever things are more stressful I seem to go into adrenal or stress mode. When my son had his hip surgery and he ended up with pneuomonia I didn't sleep or eat for a few days not until I knew he was getting better. I told his dad that maybe I'm going to have to bring a mini bar or a flask w/me! Ha! Ha! I'm not much of a drinker but just to keep sane I may need it. I asked his doctors if they could sedate me for a week or two, lol. I wish they could. And wake me up when it is all over with. I just have to remember that my son is tough! Always has been and he always surprises me. When I'm not sure his little body can handle it he always pulls through. Thanks for listening and letting me vent.

  5. #5
    Join Date
    Jun 2004
    Posts
    55

    yes, it IS hard

    But you will do what you need to do. That is what mothers do...

    My thought in addition to what has already been shared, dont be afraid to ask for help from the staff. One of the things I had a terrible time with was letting go of doing all the things I normally do for Sean when he is in "club med" for this kind of thing. I do his diapers, bathing, meds, gt feeds, TPN, etc... most of the time the hospitals we have been to let me. This hospital did as well, but by about week 2 out of 9 I was losing it emotionally. I was up with him repeatedly every night, getting the nurses on schedule with his meds, changing his diapers, etc. Finally I had to let go, pulled the curtain around the parent bed, and told him to use the nurse call button during the night if he needed meds or changing or anything. Asked the nurses to check on him more often as well as I needed to be able to "check out" and sleep or I would not survive the expected long stay (Halo traction).

    They also arranged for volunteers to come play games with him, OT and PT to work with him on skills and games so I could have some small breaks during the day as well. It was still stressful, but I am finding it was a good thing for me to learn to let go a little, and for them to be exposed to my wonderfully special young boy child. He changes people when he meets them and they get to know him.... he really does.

    Praying for things to go smoothly as they can, and for you to feel supported and cared for during this time.

    Hugs, Heidi

  6. #6
    Join Date
    Jan 2006
    Posts
    78
    Hi, Heidi
    Good to hear from you! Thanks for being there as always. I can relate to doing everything for my son when he is in the hospital as well. The hospital lets me do the same as well. But it is like you said after being there 1-2 weeks and getting up every night it does wear. I always sleep with one eye open. I hear the nurses come in and they take care of his needs and when they leave I get up and make sure my son is comfortable. If he is not the way I want him then I fix it. I am nitpicky when it comes to him. The good news is once he gets out of the PICU and goes to intermediate ICU I know a lot of the nurses on that floor and that will be a relief. I even managed to straighten things out w/ the attending critical care doctor that I had a big problem w/ when my son had his hip surgery. I seen him again when my son had his hydrocele surgery since my son was under his care again. I was not happy about this at all at first and I let him know that I was upset w/ the care he provided the last time around. He stayed over an hour in my son's room and talked to me when my son was down in PICU. We had a heart-to-heart and I think he really felt bad for the way things had gone. He was much more attentative this time and made a point of coming in to see me daily to talk about how things were going. I'm glad we straightened things out since likely my son will be under his care again for the fusion.

    I know I'll just have to manage as best I can. It is the waiting right now that is driving me nuts. At least when I work during the day it helps somewhat although I have found the past couple of days I'm not as focused. To be expected I guess.

    I hope Sean and you are having a good summer and things are continuing to go well for him and your family. Best wishes!

  7. #7
    Join Date
    Jan 2006
    Posts
    74

    More support......

    Hello blackwidow....

    My son just had surgery this past Monday. He is our only child and I was a complete wreck. I had to keep myself as busy as possible and not sit and think about the negatives or worries (believe me, I know, easier said than done!). It hit me the morning we went to the hospital but I just kept praying. You sound like you are a very strong person, and I will send positive thoughts and prayers your way. I can relate to the not having familial support, my sister was the only one besides my husband and myself who supported our decision. I know we did the right thing, the first time I saw how straight my son was I almost cried. How someone can have the amazing ability to correct such severe curves was beyond me. Please know you are in my thoughts and prayers. {{{{HUGS}}}}
    Laurie
    mom to Josh age 15, double curves 77T/55L Posterior spinal fusion done at age 13 on July 10, 2006 from T2 - L5 Now 35T/25L

  8. #8
    Join Date
    Dec 2004
    Posts
    236
    Hello! I was just wondering if you could ask the nurse or doctor at your ortho's office if there is someone who has recently gone thru this (at your hospital) that you could talk to. We've just during the past year at our hospital created a support group, because truly the people with the most empathy are the ones who are going thru it. And, the best thing to see are the kids (post-op) who attend the meetings; they're just amazing -- laughing and joking pretty much about the whole surgery and recovery. p

  9. #9
    Join Date
    Jan 2006
    Posts
    78
    Thank you all for the good wishes. I really need them right now. Yes, Pat I have spoken to a few parents their children are classmates of my son. One is actually an ICU nurse at the hospital where my son will be at for the surgery. Her son had spinal fusion about 6 months back and I got a chance to see him and he looked great. So did all of the other children as well. So in some respects I do know what to expect. But with my son the most concerning issue will be respiratory. The surgeon's biggest concern is whether or not my son will be able to come off the breathing tube. This is why I'm so scared. His pulmonologist feels his chances are good but he will need a lot of respiratory therapy/support.

    Laurie, I noticed your son had a 77 degree thoracic curve. Was his breathing becoming affected by the curve? My son's curve measures around 65-67 degrees thoracic and he is having problems with shortness of breath and needing a little bit of O2. I'm curious. My son is not able to communicate to me if he is uncomfortable or having any pain. In my opinion he doesn't seem to bothered by it but I suspect my son has a high pain threshhold. I hope for a quick recovery for your son and I will be thinking of your family as well!

  10. #10
    Join Date
    Jan 2006
    Posts
    78
    I got a call about my son's preop labs this morning. Apparently, his clotting times are abnormal. I guess he needs to take vitamin K for 24 hours and get labs again. If things are still abnormal he will need to see hematology to see if he will be ready for surgery next week. They are not sure if it is because he was antibiotics recently. I hope all will be alright. But it is just one more thing he doesn't need right now.

  11. #11
    Join Date
    Jan 2006
    Posts
    74

    Breathing problems

    My son was diagnosed with asthma at age 4 and it was getting consistently better over the last couple years. The past 6 months or so it seemed to be getting worse again, and the scoliosis was diagnosed in January so I can only assume it was because of that that it was acting up again so much. He had a growth spurt and then the scoli was discovered. It's been a long road for us, too, as we went thru heart issues and several rejections at the Red Cross because our surgeon asks for self-blood donations. My thoughts are with you and please know you're not alone. Anytime you want to talk, feel free to drop me a line.
    Laurie
    mom to Josh age 15, double curves 77T/55L Posterior spinal fusion done at age 13 on July 10, 2006 from T2 - L5 Now 35T/25L

  12. #12
    Join Date
    Jan 2006
    Posts
    78
    Laurie, it sounds like your son has been through quite a bit. I hope the asthma will get better since he has had surgery now. I hope after surgery my son's apnea will improve. I suspect it is due to the scoliosis. Although the doc's are saying it is central apnea. All I know is that my son did not have these problems over a year ago and now he has them so I can only attribute it to the scoliosis. I didn't realize how a growth spurt can wreak havoc on scoliosis. My son went from having a 40-45 curve and in six months time was up to 65-67 degrees! My jaw dropped to the floor when I saw the x-rays and was told the bad news. Fortunately since January his curve has not progressed any further.

  13. #13
    Join Date
    Jan 2006
    Posts
    74
    blackwidow:

    I was surprised about the scoliosis myself. I worried even more that when we had to postpone the surgery twice that the curve would get even worse, but luckily it didn't. Who knew that a little growth spurt could cause this to happen?! So far since we've been home his asthma hasn't acted up at all. Is your son on some kind of monitor for the apnea?
    Laurie
    mom to Josh age 15, double curves 77T/55L Posterior spinal fusion done at age 13 on July 10, 2006 from T2 - L5 Now 35T/25L

  14. #14
    Join Date
    Jan 2006
    Posts
    78
    Hi, Laurie
    Glad to hear that your son isn't have asthma attacks. That would be rough because I would think it would hurt to cough. I know I have asthma myself. My son is not on any type of monitor for the apnea. He has it all the time. Takes a couple of breaths pauses for about 10 sec. repeats this pattern all the time. Sometimes he does seem short of breath though. I do have a pulse sac to check his O2 saturation just so I know how much oxygen to give him. The doctors arent' promising any improvement with the apnea after the surgery. But I'm hoping it will resolve itself since his lung won't be crushed anymore. As long as he doesn't get any worse that is all I care about.

  15. #15
    Join Date
    Jan 2006
    Posts
    78
    Apparently the vitamin K did not do the trick. So I have to take my son to see the hematologist tomorrow. I don't know how off those labs are? Just a little or a lot? I'm not sure what they do to treat this? And if there is enough time to do so before Monday. I'm not sure why they scheduled these preop appts. only 1 1/2 weeks before surgery. If problems come up you're scrambling to fix the the problem in time. Just pisses me off! Has anyone ever had abnormal blood clotting times and what did they do to treat it?

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