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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
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#1
10-03-2003, 07:42 AM
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Jack came home for his very first visit Today!! (with no nurse)
Wowee, one big step for Mankind, I mean Jack hehehe All went really well, he was home only for an hour, as we had to travel.. but its only the start! I cant tell you how great it was, You guys know how it feels - I had my turn today!! I am still in Cloud 9..! here is a few pics.  Mum, looking a little nervous, but remained calm Whilst Jack had things to look at.  Happy Boy. Now we need a vent to get him home, I am now pushing for a LTV 1000 as I cannot believe how tiny they are and how easy to use they look like.. the vents we have been trying are no lighter then 35-40 pounds and look like Microwave ovens!! So cross those fingers that the team will try him on one soon! Jess
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Jack (4 years) X-Linked Myotubular Myopathy, Trach/Vent/G-Tube, Cute button nose, Heart melting smile, Cheeky as can be! 
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#2
10-03-2003, 07:58 AM
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Jess, how wonderful. Â*Hearing how much you have to go through just to get your baby home, makes me realize how lucky I was to be able to get my Jack home as soon as I did. Â*You are a beautiful family and I pray for the day Mr. Jack is home to stay.
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Ann-mom to Jack- 14 yrs old;vent dependent;dystroglycanopathy congenital muscular dystrophy; also mom to Hilary (22), Mary (19) and Eric (10) Jack's Journey and Then Some TouchStones of Compassionate Care The Willow Tree Foundation   “Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true”
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#3
10-03-2003, 08:28 AM
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 Jess, I am sooooo excited for you guys! I know just the other day you were telling me that a trip was being planned, but I didn't expect it to happen so soon. I love the pics you sent me. Of course, I added them to my "Jack" collection. XOXOXOXO Amanda
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Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube. 
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#4
10-03-2003, 09:37 AM
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Jess,
I LOVE the pictures!! I hope you can get an LTV - I can't remember the weight, something like 11 pounds, but definitely under 15 pounds. Very easy to get around with, relatively speaking at least. Wishing Jack a speedy homecoming!! christy 
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Gaithy's Mom:28wk preemie born 8/2000 at 1 LB, IUGR, SGA, ROP, BPD, g-tube/nissen. Trached 4-2001 and LTV950 ventilator until 5-2003. Decannulated 8-3-04
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#5
10-03-2003, 10:50 AM
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Jess that is incredible. I am so happy for you and Jack looks thrilled too. I remember our first day pass.........we stole her as fast as we could and zoomed home, showed her to anyone who would look at her (very few had taken the trek to hospital to see her) and zoomed 2 hours back to hospital. I can relate. LOL. It is just a taste of good things to come. Also, you look like Kate Winslet, very much. Just had to share. Way to go Jack, we are so happy for you.
Kellyxoxoxox
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Kelly, mother of , Indira 6 (trach and g-tube)[/color] [/color]and Max 4. [/color]When there is no  you are the reason I bound out of bed. Thank-you for giving me life! See Indie- http://www.tracheostomy.com/trachkids/kids12.htm
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#6
10-03-2003, 11:51 AM
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Jess i am very happy for you! I bet that was one of the happist days for you. I cnat wait until you can bring Jack home for good!
Hope
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Trevor has Cystic Hygroma / Lymphanigiomas in floor of mouth, tongue, and chin area. He was trached at birth and also has a g-button. He is on pg. 16. http://mysite.verizon.net/res1ta6y/index.html
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#7
10-03-2003, 12:43 PM
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WAY TO GO!!! I am so happy for all of you, I hope you had an amazing day and I hope you have many more wonderful days ahead!
Lots of Love Carrie
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 Our little miracle, Nicholas Scott born 08/09/02; CHARGE Syndrome, bilateral cleft lip/palate, congenital heart disease, trach and g-tube, hearing aids. Decanulated!
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#8
10-03-2003, 01:18 PM
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Jess-
This is a very good day indeed!! Way to go Jack!!
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Anne, mom to Evan, born 1/18/01, preemie, TEF/EA repaired, subglottic stenosis, laryngeal web, trach at 6 wks, LTP 8/02, decannulated 5/17/03 , Mic-Key button removed 7/2/04. http://www.tracheostomy.com/trachkids/kids11/evan http://anne-evan.blogspot.com
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#9
10-03-2003, 01:57 PM
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Congratulations Jess! Your pictures are sooo beautiful. I'm so happy for you guys!
Karen
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Karen, mom to Ariel born 7/10/02-trached 7/15/02. Chronic lung disease, bronchomalacia, hypopharangial collapse. O2 dependent when asleep. Newly diagnosed with unbalanced translocation, chromosome 7 and 10.
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#10
10-03-2003, 03:55 PM
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How exciting! Ilove the photos, too. I hope you get a vent you can bring home soon so it can be more than just a day trip! Thanks for sharing. Deb
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Grateful thorns have roses 24 weeker now almost 11 years old and in third grade! trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08 [IMG] [IMG]
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