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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
01-10-2005, 10:16 AM
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We have managed to find ourselves STUFFED into an over crowded schedule for an airway clinic appointment on Thursday. Our Dr seems to think that maybe a bit of laser surgery to remove some tissue might work to get us the needed space in Tricia's airway. He says that we only need 1-2 mm more, but he has been saying that for about 2 years (ack).
As part of this next round of surgery, we will also be upsizing Patricia's trach back to a 4.0. We downsized in October anticipating decann...which didn't happen. We were at a 4.5, but I am not sure we will go back that far. I don't know how quickly this next round will progress, but I believe he might preform another observation bronc before scheudling the actual laser work. Needless to say, I am not "holding my breath" for this to move quickly. I will keep you all posted on what happens next. Thanks for your support. Godspeed Clare
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Mother to 3 Â*Rebekah 12. Patricia 9 and Jacob 7.Â*Patricia--diagnosed at age 4 with VCP/Subglottic Stenosis. Â*Has had T/A, LTP(8/10/01),Trach(2/25/02), 2 trach revisions arytnoid work,vocal chord lateralization(8/10/04) and countless broncs in the last 4 years. Decannulated!! 9/30/05 Â*Patient at CHOP 
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#2
01-10-2005, 07:00 PM
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I hope all goes well. You deserve some good news and to move forward. Looking forward to hearing how it all goes.
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Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007.  B & C are surviving triplets. Brooke survived for 1 month.
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#3
01-10-2005, 07:28 PM
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Clare
I am glad you have another "plan" and destination to focus upon. Its hard when you don't have anything mapped out. I am amazed at your strength and determination. Tricia is very blessed to have you!! Stay strong and hopefully this will be the beginning of the end... Whitney
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 Mom to twin boys, Alexander and Aidan born on April 1st, 2003. They are former 25-weekers. Alex was trached from 10-03 to 4-05. Also mom to my lovely new daughter Amelia born August 19th, 2011!
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#4
01-10-2005, 10:11 PM
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I'll be thinking good thought for you!!
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Mom to Jack, born with a giant omphalocele on 6/30/02 at 32 weeks. Trached 12/23/02 due to secondary pulmonary hypertension. Decannulated 6/2/05! Strong, strong little man!!
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#5
01-10-2005, 10:11 PM
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Great news!
Keep us all posted.
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#6
01-11-2005, 08:33 AM
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Please let us know what happens, tell Tricia we are pulling for her down in Pensacola!!
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Leslie, mother to Chris (12), Chase (3) and Chad (2) I have 3 boys cause I didn't want 4. Chase- X 31 weeker, Trachea Esophageal Fistula, Esophageal Atresia, Pyloric Stenosis, VSD, Pulmonary Stenosis, Severe malacia (90% occlusion)..one failed decann attempt
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#7
01-11-2005, 10:23 AM
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Clare,
We will certainly remember you and Patricia (and your whole family) in our prayers. Whitney is right...your strength and determination are admirable! Please just know that we are praying for good results from the lasering and that THIS will be the year that Patricia will reach decannulation. Jennie
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Mommy to Hannah 8/2/03: fmr 25-weeker, trached 11/03 for subglottic stenosis, LTP 4/05, CTR 4/06, LTP 1/07. Decannulated 1/19/2007!! Gearing up for reconstruction #4; Also Mom to Brianna, 2/22/98: fmr 24-weeker, a little dramaqueen. My amazing gifts.
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#8
01-11-2005, 10:44 AM
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Clare - I'm glad you have a plan - what is this now. . . Plan "E"!! Â*When I think of you and Patricia and the journey you've had these last few years, I think of "Finding Nemo" and the phrase Â*. . . "Just keep swimming, just keep swimming". Â*
Hang in there and "just keep swimming".  Ann
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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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#9
01-11-2005, 01:09 PM
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Good luck! I truly hope this is the step that gets Tricia where she is supposed to be...although I imagine there are many times you wonder if these "next steps" just have you walking in a circle. We'll all be sending our best wishes to your family. I know how hard this has been on Tricia.
Erin
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Mom to Sara 10/23/2000 - trach, congenital subglottic stenosis, laryngeal web, LTP 04/03, eosinophilic esophagitis, Â 2nd LTP 7/20/05 decannulated 7/28/05, retrached 8/25/05, decannulated again 11/11/05!
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#10
01-12-2005, 01:47 AM
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I hope you all get the break you deserve! We have to learn to be so patient, don't we? It's a nightmare.
Love, Kate
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Kate, Mum to: Angus 27/6/04-24/11/10 My star of a boy who was vent and O2 dependent 24/7. One of the loveliest kids you could ever have met. Pics and vids Blog Juliet 28/9/99 perfectly healthy and beautiful Alasdair 28/9/10 Delightful, easy-going boy I'm a 'dawk'  
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