Colbie's surgery

Hang in there! Waiting is so hard! I do not have a G-tube, so I am not much help with that. However, I had my muscle biopsy done in July. If the muscle is going to Atlanta I was told it can take as long as four months to get results back. Ugh. Mine took two months. Somehow, with funniness at my doctor's office, I did not see the results until January. While I was waiting I slept a lot,and tried not to push myself to hard physically. Looking back I probably should have been drinking more water. I will be praying for you and Colbie.

My daughter has had her gtube since 7mos old. I have to say I LOVE IT! It takes all the worry from me having to try and force feed her and medicines are SO much easier to give! She was only in pain for about 2 days after surgery and came home on the thrid day. She had hers done with a bard and she had that until it broke and then we switched to the mini mickey since the bard has to be taken out and put in under GA and with her condition we do not want to put her under everytime it breaks. What kids you they doing for your daughter? I also have experience with several types of feeding pumps so if you have any questions about the gtube or pump just ask. AS for the mucel biopcy my daughter never had to get one because the first blood draw/spinal tap came back positive for Leighs disease (very rare to get dx with blood work!) but the resluts still had to be sent to a specialty genetic lab and the results took about 6wks but I think it all depends on how many things they are checking for and where they send it. I will be praying for a quick recovery for her HUGS!! Keep us updated on how she is doing!

hey, I'm late to the thread so he's already had the surgery. Linden has been tube fed since he was 3 months old. He got his g-tube at 5 months old. It took about a month to learn all the tricks but now I LOVE it! I sometimes wish everyone came with a tube! If you have any problems, just post them and I'm sure someone will have a trick to help you guys deal with it. As for the biopsy, Linden's results came back in 4 weeks. He had stuff show up on all areas of the biopsy but I'm not sure if that made a difference as to how fast we got them or not. Most people I know of have gotten them in 6ish weeks. I got our results via email right before leaving for an admission for bad labs. At first I was rather upset about this, but it gave me time to sort through it all and then I had good questions to ask the dr when I talked to her. If you have any questions about the results you can post them here and we can all see what we know about them. A lot of the stuff I don't understand, but we can definitely give it a try!

Hi everyone Colbie came through surgery well and is on the road to recovery. If we could get past the redness around the site of the G-Tube life would be great. She is going to be dropping down to half days at school due to the fatigue and just miserbleness that a whole day creates for her. I am hoping to make many new connections from this website as I feel so alone in the world right now. I am scared, they just gave us a new prognosis of six months to two years for Colbie because even with the G-Tube she is still losing weight rapidly and is unable to maintain her temperature and her pulse. God Bless to all and hugs abundant. Alonda

I'm glad she came though well! Linden's tube site looked gross for about three weeks after. http://i49.photobucket.com/albums/f265/MotherWhimsey/informative%20pictu... that was 12 days post op. It wasn't infected or anything, just looked yucky. As for the prognosis, we've had a lot of them and they've all been totally different. When he was a baby they said he probably wouldn't make it to his first birthday... and now he's made 2. Basically, with Mito it can all change. Plus no one really knows what's going to happen, so I wouldn't put a whole lot of stock in it. Just take it as it comes and don't worry too much about what might happen. The best thing we've done for Linden is to be proactive and address a problem before it gets big. If we wait till it's a huge problem it's hard to stop, but if we jump on it right away we can keep it from becoming something huge. We see Dr K in Houston and she said she won't give us a prognosis. She says that no one knows what is going to happen so she doesn't want to attempt to predict anything. She did say that he'll have big medical issues his whole life, but that could be one month or 20 years. So we just try not to think about it. I figure we'll know it when the time has come and we can start worrying about it then. many hugs, Courey

Hi Courey Thank you for the words of wisdom. I think that we (Mito families) all need to hear these things every once in a while. We are so new to this diagnosis and to what to expect etc. I hope that the prognosis is wrong and we do not tell Colbie anything about it. She just knows that she is sick and thinks it is pretty yucky. We remain positive as well and jump on things before they are blown out of proportion as to not make her go through anything too major. Thanks also for the picture as again it helps to see that someone else has been there and done that.

I understand the difficulty of dealing with the G-tube. My son had his put in in late september and I HATED it for at least 2 months. I felt it was causing more issues and it seemed to always be red and oozing, painful and yucky. Basically it was my problem and not the tube. We have settled in and find it to be the single greatest tool I have to help my son. Before my son was born I would have taken to heart any prediction a reputable doctor gave me but they told me my son would not live the day he was born (23 months ago). After about a month they told me he was so damaged that I needed to face what the future might bring. When my son gave the doctor a big huge social smile at six weeks he almost fell on the floor!!!-He walks and talks now and tells the nurses 'thank you' after they take his blood. I take everything doctors tell me as words of caution and reminders to keep me on top of my son's health every day but I will never again worry about a prognosis.