Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Kristi , Sorry to hear you had that done. That does not sound to exciting. I would hate the thought of them doing that to my little boy. How old were you? Do you know how many times you have been hospitalized? Matt has been in 2 times and he will be 5 in Aug. I am just curious? Take care, Gosh hope you dont have to have one of those again. I guess it could have been worse. Good luck,Take care Matts mom, Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 I haven't been hospitalized much until a few years ago. When I was 18 months I had the muscle biopsy to find out that I had SMA. I don't remember that. Then when I was 10 I had phnemonia and was in the hospital 2 weeks. Then in August 2000 (I was 21) I was in the hospital 1 month. That is when I had respitory falier and had the trach put in and the first bronc scope was done because I just laid down and couldn't breath and they suctioned a lot of blood out my trach. Then about 6 months later I had the bronc done again do to bleeding in my trach and difficulty breathing. I was just there a few hours. About a month later I had an outpatient surgery to stitch my stomach up because I had a feeding tube when I got the trach put in and I had it taken out later but it didn't heal closed all the way. So up until I was 21, I was fine. Can Matt still walk? Does he have a trach or anything? I could walk at his age with assistance of a walker. I didn't get a wheelchair until I went to Kindergarden. Kristi > Kristi , > Sorry to hear you had that done. That does not sound to exciting. > I would hate the thought of them doing that to my little boy. How old were > you? > Do you know how many times you have been hospitalized? > Matt has been in 2 times and he will be 5 in Aug. I am just curious? > > Take care, Gosh hope you dont have to have one of those again. > I guess it could have been worse. > Good luck,Take care Matts mom, Steph > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 e, Thank you for your input about homeschool.I appreciate your honesty. I am thinking of doing preschool at home and 1st grade public school. He will be 6 then too. I will feel a little better with that. Where is Everett WA? How far are you from Seattle? Thank you and take care, Steph matts Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 Steph, I am an only child. I was able to crawl, stand, pull myself up, and walk with assistance but can't fdo any of that now. I can't even feed myself or write now. I lost strength in my arms and hands when I was hospitalized because I was stuck in bed for about 6 months not doing anything. I attended public school and was main streamed. I was in other activities...4-H, Student Council, Prom Committee, ect. I graduated high school with 3.4 average. The kids in my class were very very helpful to me. They would do anything for me. I am having my 5th year high school reunion this summer and I am in charge of planning it! Keeps me busy. I don't know what an ABI vest is so, no I don't have one. I do have a back brace for scholiosis that I have to wear to sit up. Kristi > Kristi, > Well your name will be easy to remember.I have a sister named kristi, > Anyways Matt has never rolled over, crawled or walked. He was diagnosed at 12 > months of age.He got his electric chair when he 2. > Gees that month in the hospital was probably a drag.I take it that the bronc > scope isnt to new of a thing. I couldnt emagine living at the hospital for > that long of a time. > > Do you have brothers and sisters? > Do you have the ABI vest or IN-EX? Matt has them both. > I LOVE the ABI vest it is the BOMB!!!! I would take the ABI vest over the > IN-EX any day...... > He does not use a bipap,and is not trached. He is very very weak though. > > I am thinking of homeschooling because of him being so weak respitory wise. > I dont know!! Did you go to school? probably huh? I am the only crazy mom > out there who wants to do this. > > Well I have to go and visit 2 friends in the hospital.Both SMA " s.Type 1 & 2 > Where do you live? Do you know anybody close to Spokane WA with SMA? > We are about 6-7 hrs East of Seattle WA. > > Take care and nice talking to you.Steph Matts Mom :) > Picture of matt,Send me a pic if you want.... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 Jodi, You have a job? Do you take a nurse w/ you or can you take care of yourself? What happens when you get sick? You don't lose your job? I was just curious how you maintain having a job. I don't even have a way to get to and from a job, let alone figuring out how I can do the job and if there is any adaptive equipment I need. Plus I have to have someone to help me do things and I am on a vent and frequently need my trach suctioned so someone else has to be there all the time. Kristi > My two cents if it's worth anything... > > I grew up very sick, always in & out of the hospital my whole childhood. > My mom would always be " pounding " on me trying to get the guk up. When I > was 12 my mom was declared an 'un-fit' mother due to alcholism and I went > to live at my aunt & uncles until I was 18. well, they were severely > strict as far as alot of my health goes, never let me spend the night at > friends house's, never go outside after dark, exactly every 4 hours I was > either on the BD board or had my pumeling vest machine on. nebs and > inhailers alternating. ALWAYS something. I got trach'd when I was 13 I > had come down w/ a bad cold & decided (on my own) that it was time for a > trach. It wasn't put in on an emergency basis, but since I've had it done > it was the 2nd best thing I've had done. > As far as home-schooling goes it's a catch 22. I was main-stream public > school, but it never failed I'd go to school & end up back @ the > hospital. As far as colds, resp. infections, and other health problems > goes home school would of been a good idea. BUT!!!! I would have missed > out on sooo much! I was on our Varsity cheerleading squad, prom, > graduation, ect...Friends are very important in a child's life, > especially a child w/ sma. Why? I think it's important to have something > to live for, alternate to same ol' same ol' at home. My HS friends said I > learned more in the hospital school and used HS as a social gathering. > heehee. Now, don't get me wrong, I wanted to be so much like the other > kids at school I decided to skip school w/ some friends,,, well it was > raining that day and not only did the rain short out my electric chair, I > got sick too. But, I have such good memories about being bad I dont let > sma stop me. > I bet your wondering if my trach was 2nd best, what's 1st? Well, many of > you know going pee is an important thing during the day, and it's SOO > hard to do transfers out and about, and I use the hoyer for transfers so > basically I have to hold it all day long at work, the mall wherever. > Until I had this new procedure done called a Mitrophnoff. It's where the > doc's take your appendex and make a canal from your belly button to your > bladder. In my case the appendex was junk so they used my intestine. It's > NOT a super pubic, there are no tubes attached and all you gotta do is > stik a cath. in your bbutton when ya gotta go, wheel up to the toilet, > go, take it out & your on your way! It's awesome! I have severe colds > often and thanks be to Jesus I only was laid up one week. > > Phew! I type w/ a mouthstick and my teeth hurt, I am just a lil winded > today..... > Good thing I work for a dentist > ~jodi > JMMO Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.