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Re: [Tracheostomy_infants] Hello all

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  • Janine Glinn
    I remember the first time I took Joseph to the doctor by myself...it took 30 minutes prep time and two trips back home, and by the end of it I was ready to
    Message 1 of 13 , Sep 1, 2006
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      I remember the first time I took Joseph to the doctor by myself...it took 30 minutes prep time and two trips back home, and by the end of it I was ready to cry. The first time I took him to Joann fabrics (my own personal happy place) I had a friend with me and was completely stressed. Now, we traipse around everywhere by ourselves...if I need to pull over to suction him, I do. But I have two other boys who need a mom and pickups from school, etc. So we deal. It is hardest to get out the first few times. Just do it. It's worth it to be back among the non-medical people in your life. Maybe you could meet a friend at a noisy coffee shop or something. People will look when you suction her, but so what? Most times, they're just curious, not rude. I always smile at Joseph when I do that and say, "Can you breathe better now?" Anyone watching then knows why the machine is there. Good luck!
      Janine
      ----- Original Message -----
      From: mawolve
      Sent: Thursday, August 31, 2006 6:19 PM
      Subject: [Tracheostomy_infants] Hello all

      I am new here and am scared to death. I have an almost 6 month old
      daughter with a trach. She was born with a vascular ring around her
      trach which was operated on in the middle of May and hit every
      complication known. She is almost ready to be relocated to a
      rehabilitation hospital here in Baltimore for children. What scares me
      the most is that I have a condition known as PTSD and I hate
      isolation. I am a big people person and enjoy going to mommy and me
      things with my children and now I have to take and pick my 4 1/2 up
      from school. Can any one tell me if you use a special stroller or how
      you manage to carry all the equipment. She will have a portable vent
      and suction machine and possible a feeding machine. Any help would be
      greatly appreciated as this all new to me as my other daughter had no
      issues to contend with atleast not like this.

      Leslie Benzion


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    • Leslie Benzion
      I really enjoyed reading your post. It made me feel good and that I am not alone. Do you have any pointers as to how you carry all the equipment? Do you use a
      Message 2 of 13 , Sep 1, 2006
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        I really enjoyed reading your post. It made me feel good and that I am not alone. Do you have any pointers as to how you carry all the equipment? Do you use a special stroller? Any tips would be most appreciated.
         
         
        Leslie
         
         
        ----- Original Message -----
        Sent: Friday, September 01, 2006 9:09 AM
        Subject: Re: [Tracheostomy_infants] Hello all

        I remember the first time I took Joseph to the doctor by myself...it took 30 minutes prep time and two trips back home, and by the end of it I was ready to cry. The first time I took him to Joann fabrics (my own personal happy place) I had a friend with me and was completely stressed. Now, we traipse around everywhere by ourselves... if I need to pull over to suction him, I do. But I have two other boys who need a mom and pickups from school, etc. So we deal. It is hardest to get out the first few times. Just do it. It's worth it to be back among the non-medical people in your life. Maybe you could meet a friend at a noisy coffee shop or something. People will look when you suction her, but so what? Most times, they're just curious, not rude. I always smile at Joseph when I do that and say, "Can you breathe better now?" Anyone watching then knows why the machine is there. Good luck!
        Janine
        ----- Original Message -----
        From: mawolve
        Sent: Thursday, August 31, 2006 6:19 PM
        Subject: [Tracheostomy_ infants] Hello all

        I am new here and am scared to death. I have an almost 6 month old
        daughter with a trach. She was born with a vascular ring around her
        trach which was operated on in the middle of May and hit every
        complication known. She is almost ready to be relocated to a
        rehabilitation hospital here in Baltimore for children. What scares me
        the most is that I have a condition known as PTSD and I hate
        isolation. I am a big people person and enjoy going to mommy and me
        things with my children and now I have to take and pick my 4 1/2 up
        from school. Can any one tell me if you use a special stroller or how
        you manage to carry all the equipment. She will have a portable vent
        and suction machine and possible a feeding machine. Any help would be
        greatly appreciated as this all new to me as my other daughter had no
        issues to contend with atleast not like this.

        Leslie Benzion


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        Checked by AVG Free Edition.
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      • Janine Glinn
        Joe doesn t have a vent, like some of the kids. We carry a suction machine (hangs by its strap on back of stroller) and the diaper bag with all the emergency
        Message 3 of 13 , Sep 1, 2006
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          Joe doesn't have a vent, like some of the kids. We carry a suction machine (hangs by its strap on back of stroller) and the diaper bag with all the emergency trach stuff goes down below. When we had him monitored all the time, that got tucked either into his car seat or on top of the stroller where the drink holder is (we have a smaller sporty pulse ox-how stylin' are we? : )
           
          I think a big part of it is just deciding to do it. Even with my other kids, getting out the door the first time was a huge challenge. I whined about all the crap then, and it was only a diaper bag! Only the fact that I despise being trapped in my house made me do it!! Joseph just has more baggage, as it were.
           
          Kellie Davidson, who is on this group, has even taken her son Seth (vent 24/7, trach, etc.) on vacation, and she has five kids. I figure, if she can do it, so can I!
          ----- Original Message -----
          Sent: Friday, September 01, 2006 10:30 AM
          Subject: Re: [Tracheostomy_infants] Hello all

          I really enjoyed reading your post. It made me feel good and that I am not alone. Do you have any pointers as to how you carry all the equipment? Do you use a special stroller? Any tips would be most appreciated.
           
           
          Leslie
           
           
          ----- Original Message -----
          Sent: Friday, September 01, 2006 9:09 AM
          Subject: Re: [Tracheostomy_ infants] Hello all

          I remember the first time I took Joseph to the doctor by myself...it took 30 minutes prep time and two trips back home, and by the end of it I was ready to cry. The first time I took him to Joann fabrics (my own personal happy place) I had a friend with me and was completely stressed. Now, we traipse around everywhere by ourselves... if I need to pull over to suction him, I do. But I have two other boys who need a mom and pickups from school, etc. So we deal. It is hardest to get out the first few times. Just do it. It's worth it to be back among the non-medical people in your life. Maybe you could meet a friend at a noisy coffee shop or something. People will look when you suction her, but so what? Most times, they're just curious, not rude. I always smile at Joseph when I do that and say, "Can you breathe better now?" Anyone watching then knows why the machine is there. Good luck!
          Janine
          ----- Original Message -----
          From: mawolve
          Sent: Thursday, August 31, 2006 6:19 PM
          Subject: [Tracheostomy_ infants] Hello all

          I am new here and am scared to death. I have an almost 6 month old
          daughter with a trach. She was born with a vascular ring around her
          trach which was operated on in the middle of May and hit every
          complication known. She is almost ready to be relocated to a
          rehabilitation hospital here in Baltimore for children. What scares me
          the most is that I have a condition known as PTSD and I hate
          isolation. I am a big people person and enjoy going to mommy and me
          things with my children and now I have to take and pick my 4 1/2 up
          from school. Can any one tell me if you use a special stroller or how
          you manage to carry all the equipment. She will have a portable vent
          and suction machine and possible a feeding machine. Any help would be
          greatly appreciated as this all new to me as my other daughter had no
          issues to contend with atleast not like this.

          Leslie Benzion


          No virus found in this incoming message.
          Checked by AVG Free Edition.
          Version: 7.1.405 / Virus Database: 268.11.7/434 - Release Date: 8/30/2006


          No virus found in this incoming message.
          Checked by AVG Free Edition.
          Version: 7.1.405 / Virus Database: 268.11.7/435 - Release Date: 8/31/2006
        • Leslie Benzion
          Wow that s amazing about Kellie. If Kellie has any pointers please please send her my way. I only have one older daughter and I am complaining? Kellie makes me
          Message 4 of 13 , Sep 1, 2006
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            Wow that's amazing about Kellie. If Kellie has any pointers please please send her my way. I only have one older daughter and I am complaining? Kellie makes me look like a winer. This is just so new to me and I hate staying in the house as well. I can't wait to bring Gavriella home and try and have as much of a normal life as possible.
            ----- Original Message -----
            Sent: Friday, September 01, 2006 4:13 PM
            Subject: Re: [Tracheostomy_infants] Hello all

            Joe doesn't have a vent, like some of the kids. We carry a suction machine (hangs by its strap on back of stroller) and the diaper bag with all the emergency trach stuff goes down below. When we had him monitored all the time, that got tucked either into his car seat or on top of the stroller where the drink holder is (we have a smaller sporty pulse ox-how stylin' are we? : )
             
            I think a big part of it is just deciding to do it. Even with my other kids, getting out the door the first time was a huge challenge. I whined about all the crap then, and it was only a diaper bag! Only the fact that I despise being trapped in my house made me do it!! Joseph just has more baggage, as it were.
             
            Kellie Davidson, who is on this group, has even taken her son Seth (vent 24/7, trach, etc.) on vacation, and she has five kids. I figure, if she can do it, so can I!
            ----- Original Message -----
            Sent: Friday, September 01, 2006 10:30 AM
            Subject: Re: [Tracheostomy_ infants] Hello all

            I really enjoyed reading your post. It made me feel good and that I am not alone. Do you have any pointers as to how you carry all the equipment? Do you use a special stroller? Any tips would be most appreciated.
             
             
            Leslie
             
             
            ----- Original Message -----
            Sent: Friday, September 01, 2006 9:09 AM
            Subject: Re: [Tracheostomy_ infants] Hello all

            I remember the first time I took Joseph to the doctor by myself...it took 30 minutes prep time and two trips back home, and by the end of it I was ready to cry. The first time I took him to Joann fabrics (my own personal happy place) I had a friend with me and was completely stressed. Now, we traipse around everywhere by ourselves... if I need to pull over to suction him, I do. But I have two other boys who need a mom and pickups from school, etc. So we deal. It is hardest to get out the first few times. Just do it. It's worth it to be back among the non-medical people in your life. Maybe you could meet a friend at a noisy coffee shop or something. People will look when you suction her, but so what? Most times, they're just curious, not rude. I always smile at Joseph when I do that and say, "Can you breathe better now?" Anyone watching then knows why the machine is there. Good luck!
            Janine
            ----- Original Message -----
            From: mawolve
            Sent: Thursday, August 31, 2006 6:19 PM
            Subject: [Tracheostomy_ infants] Hello all

            I am new here and am scared to death. I have an almost 6 month old
            daughter with a trach. She was born with a vascular ring around her
            trach which was operated on in the middle of May and hit every
            complication known. She is almost ready to be relocated to a
            rehabilitation hospital here in Baltimore for children. What scares me
            the most is that I have a condition known as PTSD and I hate
            isolation. I am a big people person and enjoy going to mommy and me
            things with my children and now I have to take and pick my 4 1/2 up
            from school. Can any one tell me if you use a special stroller or how
            you manage to carry all the equipment. She will have a portable vent
            and suction machine and possible a feeding machine. Any help would be
            greatly appreciated as this all new to me as my other daughter had no
            issues to contend with atleast not like this.

            Leslie Benzion


            No virus found in this incoming message.
            Checked by AVG Free Edition.
            Version: 7.1.405 / Virus Database: 268.11.7/434 - Release Date: 8/30/2006


            No virus found in this incoming message.
            Checked by AVG Free Edition.
            Version: 7.1.405 / Virus Database: 268.11.7/435 - Release Date: 8/31/2006

          • kellie davidson
            Greetings, We just returned from Jamaica last night so I m catching up on my emails.... We had a wonderful time and all was well...our first trip out of the
            Message 5 of 13 , Sep 3, 2006
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              Greetings,
              We just returned from Jamaica last night so I'm catching up on my emails....
              We had a wonderful time and all was well...our first trip out of the country since Seth & Samara were born:)
              Let me start by saying welcome to the group...and wow a vascular ring is very rare. You are only the second person I've met who had a child with one....who did your lil' sweet peas surgery....
              I know how scary it is but you will find what works for you and it will feel great to be able to go out:0)
              We actually have six children...and we take them all over the place with us.. Our main goal in life is to make sure Seth has the most "normal" life possible.. I can give you ton's of tips and send pictures of all the little things I've rigged up to make life with a vent easier.... We are creeping up on 2 years of 24/7 vent support so I've learned a few tricks along the way:)  Just let me know what kind of info you need....ask me anything you want......Also I can give you my phone number and you can call me if you want to talk "vent talk"  just call me anytime H-404-551-2879 C-734-358-8200
              Kellie~
              momma to Madison 11, Keegan 5, Riley & Elijah 4 (twins), Samara & Seth 2 (twins)
              Seth, Trach, vent 24/7, G-tube, seizure disorder, CP,  and the LOVE of our lives!!!


              Leslie Benzion <lbenzion@...> wrote:
              Wow that's amazing about Kellie. If Kellie has any pointers please please send her my way. I only have one older daughter and I am complaining? Kellie makes me look like a winer. This is just so new to me and I hate staying in the house as well. I can't wait to bring Gavriella home and try and have as much of a normal life as possible.
              ----- Original Message -----
              Sent: Friday, September 01, 2006 4:13 PM
              Subject: Re: [Tracheostomy_ infants] Hello all

              Joe doesn't have a vent, like some of the kids. We carry a suction machine (hangs by its strap on back of stroller) and the diaper bag with all the emergency trach stuff goes down below. When we had him monitored all the time, that got tucked either into his car seat or on top of the stroller where the drink holder is (we have a smaller sporty pulse ox-how stylin' are we? : )
               
              I think a big part of it is just deciding to do it. Even with my other kids, getting out the door the first time was a huge challenge. I whined about all the crap then, and it was only a diaper bag! Only the fact that I despise being trapped in my house made me do it!! Joseph just has more baggage, as it were.
               
              Kellie Davidson, who is on this group, has even taken her son Seth (vent 24/7, trach, etc.) on vacation, and she has five kids. I figure, if she can do it, so can I!
              ----- Original Message -----
              Sent: Friday, September 01, 2006 10:30 AM
              Subject: Re: [Tracheostomy_ infants] Hello all

              I really enjoyed reading your post. It made me feel good and that I am not alone. Do you have any pointers as to how you carry all the equipment? Do you use a special stroller? Any tips would be most appreciated.
               
               
              Leslie
               
               
              ----- Original Message -----
              Sent: Friday, September 01, 2006 9:09 AM
              Subject: Re: [Tracheostomy_ infants] Hello all

              I remember the first time I took Joseph to the doctor by myself...it took 30 minutes prep time and two trips back home, and by the end of it I was ready to cry. The first time I took him to Joann fabrics (my own personal happy place) I had a friend with me and was completely stressed. Now, we traipse around everywhere by ourselves... if I need to pull over to suction him, I do. But I have two other boys who need a mom and pickups from school, etc. So we deal. It is hardest to get out the first few times. Just do it. It's worth it to be back among the non-medical people in your life. Maybe you could meet a friend at a noisy coffee shop or something. People will look when you suction her, but so what? Most times, they're just curious, not rude. I always smile at Joseph when I do that and say, "Can you breathe better now?" Anyone watching then knows why the machine is there. Good luck!
              Janine
              ----- Original Message -----
              From: mawolve
              Sent: Thursday, August 31, 2006 6:19 PM
              Subject: [Tracheostomy_ infants] Hello all

              I am new here and am scared to death. I have an almost 6 month old
              daughter with a trach. She was born with a vascular ring around her
              trach which was operated on in the middle of May and hit every
              complication known. She is almost ready to be relocated to a
              rehabilitation hospital here in Baltimore for children. What scares me
              the most is that I have a condition known as PTSD and I hate
              isolation. I am a big people person and enjoy going to mommy and me
              things with my children and now I have to take and pick my 4 1/2 up
              from school. Can any one tell me if you use a special stroller or how
              you manage to carry all the equipment. She will have a portable vent
              and suction machine and possible a feeding machine. Any help would be
              greatly appreciated as this all new to me as my other daughter had no
              issues to contend with atleast not like this.

              Leslie Benzion


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              Checked by AVG Free Edition.
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            • Leslie Benzion
              Hi there Kellie, Thanks for writing me. My daughter was operated here in Baltimore by Dr. Luca Vracelli (think that s how you spell his name), at John s
              Message 6 of 13 , Sep 3, 2006
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                Hi there Kellie,
                 
                 
                Thanks for writing me. My daughter was operated here in Baltimore by Dr. Luca Vracelli (think that’s how you spell his name), at John's Hopkins Hospital. I would love to see the things you rigged  up for Seth. Anything you can do to help give us tips for Gavi would be most appreciated. Also, thanks so much for your phone #'s. Where are you located? Just curious? We are in Owings Mills, Maryland which is 30 min away from John's Hopkins.
                ----- Original Message -----
                Sent: Sunday, September 03, 2006 7:08 PM
                Subject: [Tracheostomy_infants] Hi Leslie...it's Kellie

                Greetings,
                We just returned from Jamaica last night so I'm catching up on my emails....
                We had a wonderful time and all was well...our first trip out of the country since Seth & Samara were born:)
                Let me start by saying welcome to the group...and wow a vascular ring is very rare. You are only the second person I've met who had a child with one....who did your lil' sweet peas surgery....
                I know how scary it is but you will find what works for you and it will feel great to be able to go out:0)
                We actually have six children...and we take them all over the place with us.. Our main goal in life is to make sure Seth has the most "normal" life possible.. I can give you ton's of tips and send pictures of all the little things I've rigged up to make life with a vent easier.... We are creeping up on 2 years of 24/7 vent support so I've learned a few tricks along the way:)  Just let me know what kind of info you need....ask me anything you want......Also I can give you my phone number and you can call me if you want to talk "vent talk"  just call me anytime H-404-551-2879 C-734-358-8200
                Kellie~
                momma to Madison 11, Keegan 5, Riley & Elijah 4 (twins), Samara & Seth 2 (twins)
                Seth, Trach, vent 24/7, G-tube, seizure disorder, CP,  and the LOVE of our lives!!!


                Leslie Benzion <lbenzion@msn. com> wrote:
                Wow that's amazing about Kellie. If Kellie has any pointers please please send her my way. I only have one older daughter and I am complaining? Kellie makes me look like a winer. This is just so new to me and I hate staying in the house as well. I can't wait to bring Gavriella home and try and have as much of a normal life as possible.
                ----- Original Message -----
                Sent: Friday, September 01, 2006 4:13 PM
                Subject: Re: [Tracheostomy_ infants] Hello all

                Joe doesn't have a vent, like some of the kids. We carry a suction machine (hangs by its strap on back of stroller) and the diaper bag with all the emergency trach stuff goes down below. When we had him monitored all the time, that got tucked either into his car seat or on top of the stroller where the drink holder is (we have a smaller sporty pulse ox-how stylin' are we? : )
                 
                I think a big part of it is just deciding to do it. Even with my other kids, getting out the door the first time was a huge challenge. I whined about all the crap then, and it was only a diaper bag! Only the fact that I despise being trapped in my house made me do it!! Joseph just has more baggage, as it were.
                 
                Kellie Davidson, who is on this group, has even taken her son Seth (vent 24/7, trach, etc.) on vacation, and she has five kids. I figure, if she can do it, so can I!
                ----- Original Message -----
                Sent: Friday, September 01, 2006 10:30 AM
                Subject: Re: [Tracheostomy_ infants] Hello all

                I really enjoyed reading your post. It made me feel good and that I am not alone. Do you have any pointers as to how you carry all the equipment? Do you use a special stroller? Any tips would be most appreciated.
                 
                 
                Leslie
                 
                 
                ----- Original Message -----
                Sent: Friday, September 01, 2006 9:09 AM
                Subject: Re: [Tracheostomy_ infants] Hello all

                I remember the first time I took Joseph to the doctor by myself...it took 30 minutes prep time and two trips back home, and by the end of it I was ready to cry. The first time I took him to Joann fabrics (my own personal happy place) I had a friend with me and was completely stressed. Now, we traipse around everywhere by ourselves... if I need to pull over to suction him, I do. But I have two other boys who need a mom and pickups from school, etc. So we deal. It is hardest to get out the first few times. Just do it. It's worth it to be back among the non-medical people in your life. Maybe you could meet a friend at a noisy coffee shop or something. People will look when you suction her, but so what? Most times, they're just curious, not rude. I always smile at Joseph when I do that and say, "Can you breathe better now?" Anyone watching then knows why the machine is there. Good luck!
                Janine
                ----- Original Message -----
                From: mawolve
                Sent: Thursday, August 31, 2006 6:19 PM
                Subject: [Tracheostomy_ infants] Hello all

                I am new here and am scared to death. I have an almost 6 month old
                daughter with a trach. She was born with a vascular ring around her
                trach which was operated on in the middle of May and hit every
                complication known. She is almost ready to be relocated to a
                rehabilitation hospital here in Baltimore for children. What scares me
                the most is that I have a condition known as PTSD and I hate
                isolation. I am a big people person and enjoy going to mommy and me
                things with my children and now I have to take and pick my 4 1/2 up
                from school. Can any one tell me if you use a special stroller or how
                you manage to carry all the equipment. She will have a portable vent
                and suction machine and possible a feeding machine. Any help would be
                greatly appreciated as this all new to me as my other daughter had no
                issues to contend with atleast not like this.

                Leslie Benzion


                No virus found in this incoming message.
                Checked by AVG Free Edition.
                Version: 7.1.405 / Virus Database: 268.11.7/434 - Release Date: 8/30/2006

                No virus found in this incoming message.
                Checked by AVG Free Edition.
                Version: 7.1.405 / Virus Database: 268.11.7/435 - Release Date: 8/31/2006


                Stay in the know. Pulse on the new Yahoo.com. Check it out.

              • swisspace
                Hi again, Cai s dad here sorry not posted much since I first introduced myself but things are busy and although reading the posts I haven t got around to
                Message 7 of 13 , Sep 4, 2006
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                  Hi again, Cai's dad here

                  sorry not posted much since I first introduced myself but things are
                  busy and although reading the posts I haven't got around to posting myself.

                  From the start we decided to treat Cai as normal as possible, despite
                  the extra work it required of us, now it is all just normal to us, in
                  the red bag goes the suction pump (medula portable) and ambibag with
                  suction catheters and HME's, this goes with Cai at all times. The green
                  bag under the pram is the emergency bag - with hand pump spare canula's
                  medication syringes etc which is always nearby but left in pram when we
                  are at home, so when we go out we just pack the red bag with pump and
                  ambibag and restock the suction catheters. as can be seen in these photos

                  http://thattimeoflife.smugmug.com/photos/72143905-M.jpg
                  http://thattimeoflife.smugmug.com/photos/72143920-M.jpg


                  if you have time and want to read more about Cai then his diary and
                  details can be found at
                  www.thattimeoflife.smugmug.com - then gallery itsy becomes Cai

                  At the moment Cai is not well, he pooed twice this morning requiring two
                  bed and clothes changes and for the first one and half hours he was
                  awake needed constant suctioning, luckily the spitex lady (home nurse)
                  stayed on an extra hour to help suction while I changed him.



                  cheers
                  Ian (or Cai's dad - Cai subject to confirmation has charge syndrome)
                • kellie davidson
                  Hello Leslie, We spend our time between Georgia & Michigan......Also we spend a great deal of time in Cincinnati as that is where we take Seth for all of his
                  Message 8 of 13 , Sep 4, 2006
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                    Hello Leslie,
                    We spend our time between Georgia & Michigan......Also we spend a great deal of time in Cincinnati as that is where we take Seth for all of his care:)
                    What type of vent will you be getting when you come home? That will make a big difference on what kind of stroller you can use.....We have a Newport HT50.....we love our vents so much because they have a 10 hour internal battery life so you do not need the huge car battery.....We have a Kid Kart wheelchair with a vent tray......but we NEVER use it...it is way to heavy for me to lift in and out of the van myself...I have used about seven different strollers for Seth and his "stuff". Here are some pictures of him in a Baby Jogger city series stroller....this one is great for outside...I will take some pics today of what we have done with his crib to accommodate equipment.....we used to be able to keep the vent in his crib with him on one of those little cube shelves....but now he can move so he crawls to the end of his bed and knocks everything over...Also where and how you keep equipment will depend on if you have home nursing care.....We do not have any home nursing care so we do things however we want.....several people keep compressors and concentrators in the basement but if you have a Nurse you may need to keep those things where she can get to them easier:)  Well I must go for now but I will send you more pics tonight and feel free to call anytime....
                    ~Kellie~

                    Leslie Benzion <lbenzion@...> wrote:
                    Hi there Kellie,
                     
                     
                    Thanks for writing me. My daughter was operated here in Baltimore by Dr. Luca Vracelli (think that’s how you spell his name), at John's Hopkins Hospital. I would love to see the things you rigged  up for Seth. Anything you can do to help give us tips for Gavi would be most appreciated. Also, thanks so much for your phone #'s. Where are you located? Just curious? We are in Owings Mills, Maryland which is 30 min away from John's Hopkins.
                    ----- Original Message -----
                    Sent: Sunday, September 03, 2006 7:08 PM
                    Subject: [Tracheostomy_ infants] Hi Leslie...it' s Kellie

                    Greetings,
                    We just returned from Jamaica last night so I'm catching up on my emails....
                    We had a wonderful time and all was well...our first trip out of the country since Seth & Samara were born:)
                    Let me start by saying welcome to the group...and wow a vascular ring is very rare. You are only the second person I've met who had a child with one....who did your lil' sweet peas surgery....
                    I know how scary it is but you will find what works for you and it will feel great to be able to go out:0)
                    We actually have six children...and we take them all over the place with us.. Our main goal in life is to make sure Seth has the most "normal" life possible.. I can give you ton's of tips and send pictures of all the little things I've rigged up to make life with a vent easier.... We are creeping up on 2 years of 24/7 vent support so I've learned a few tricks along the way:)  Just let me know what kind of info you need....ask me anything you want......Also I can give you my phone number and you can call me if you want to talk "vent talk"  just call me anytime H-404-551-2879 C-734-358-8200
                    Kellie~
                    momma to Madison 11, Keegan 5, Riley & Elijah 4 (twins), Samara & Seth 2 (twins)
                    Seth, Trach, vent 24/7, G-tube, seizure disorder, CP,  and the LOVE of our lives!!!


                    Leslie Benzion <lbenzion@msn. com> wrote:
                    Wow that's amazing about Kellie. If Kellie has any pointers please please send her my way. I only have one older daughter and I am complaining? Kellie makes me look like a winer. This is just so new to me and I hate staying in the house as well. I can't wait to bring Gavriella home and try and have as much of a normal life as possible.
                    ----- Original Message -----
                    Sent: Friday, September 01, 2006 4:13 PM
                    Subject: Re: [Tracheostomy_ infants] Hello all

                    Joe doesn't have a vent, like some of the kids. We carry a suction machine (hangs by its strap on back of stroller) and the diaper bag with all the emergency trach stuff goes down below. When we had him monitored all the time, that got tucked either into his car seat or on top of the stroller where the drink holder is (we have a smaller sporty pulse ox-how stylin' are we? : )
                     
                    I think a big part of it is just deciding to do it. Even with my other kids, getting out the door the first time was a huge challenge. I whined about all the crap then, and it was only a diaper bag! Only the fact that I despise being trapped in my house made me do it!! Joseph just has more baggage, as it were.
                     
                    Kellie Davidson, who is on this group, has even taken her son Seth (vent 24/7, trach, etc.) on vacation, and she has five kids. I figure, if she can do it, so can I!
                    ----- Original Message -----
                    Sent: Friday, September 01, 2006 10:30 AM
                    Subject: Re: [Tracheostomy_ infants] Hello all

                    I really enjoyed reading your post. It made me feel good and that I am not alone. Do you have any pointers as to how you carry all the equipment? Do you use a special stroller? Any tips would be most appreciated.
                     
                     
                    Leslie
                     
                     
                    ----- Original Message -----
                    Sent: Friday, September 01, 2006 9:09 AM
                    Subject: Re: [Tracheostomy_ infants] Hello all

                    I remember the first time I took Joseph to the doctor by myself...it took 30 minutes prep time and two trips back home, and by the end of it I was ready to cry. The first time I took him to Joann fabrics (my own personal happy place) I had a friend with me and was completely stressed. Now, we traipse around everywhere by ourselves... if I need to pull over to suction him, I do. But I have two other boys who need a mom and pickups from school, etc. So we deal. It is hardest to get out the first few times. Just do it. It's worth it to be back among the non-medical people in your life. Maybe you could meet a friend at a noisy coffee shop or something. People will look when you suction her, but so what? Most times, they're just curious, not rude. I always smile at Joseph when I do that and say, "Can you breathe better now?" Anyone watching then knows why the machine is there. Good luck!
                    Janine
                    ----- Original Message -----
                    From: mawolve
                    Sent: Thursday, August 31, 2006 6:19 PM
                    Subject: [Tracheostomy_ infants] Hello all

                    I am new here and am scared to death. I have an almost 6 month old
                    daughter with a trach. She was born with a vascular ring around her
                    trach which was operated on in the middle of May and hit every
                    complication known. She is almost ready to be relocated to a
                    rehabilitation hospital here in Baltimore for children. What scares me
                    the most is that I have a condition known as PTSD and I hate
                    isolation. I am a big people person and enjoy going to mommy and me
                    things with my children and now I have to take and pick my 4 1/2 up
                    from school. Can any one tell me if you use a special stroller or how
                    you manage to carry all the equipment. She will have a portable vent
                    and suction machine and possible a feeding machine. Any help would be
                    greatly appreciated as this all new to me as my other daughter had no
                    issues to contend with atleast not like this.

                    Leslie Benzion


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