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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
04-09-2009, 03:15 PM
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update
Hi!
Just giving an update on Cheyanne, she started to asperate on her fluids about 3wks ago, went to see her consultant last wk and we had to put her NG tube back in, now she is back to her normal self and getting alot more fluids in her now. Got to keep to tube in for the next 2mths as she is having another videofloscopy done then but she needs another tube in next week to check her ph levels. Jo
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 Jo mum to Cheyanne 5, Samantha 12, Peter 14 and Hannah 16.Cheyanne trached @ 10wks due to suglottic stenosis, spider webbing on voicebox, voicebox closed and polyps (growths on voicebox and in windpipe) now suffering with Petit Mal Epilepsy, drop attacks and absence stares. Mic-Key Button. 1st stage LTR complete. 2nd stage LTR complete. Cheyanne has now got asthma and heart problems. Now trach FREE. 
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#2
04-09-2009, 06:01 PM
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Is it common for hospitals to release patients with NG feedings? I'm curious because they don't do that at our hospital, although I know they do at the children's hospital.
Do they know why Cheyanne is aspirating again?
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#3
04-10-2009, 04:28 AM
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Oh no Jo, I'm sorry you had to do that. Hope it's just in the short term, what has caused her to aspirate again?
Niff - many children are discharged with NG tubes, Sam was home with one for 5 months till he got his nissen and gastrostomy. Julie x
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  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#4
04-10-2009, 06:41 AM
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Did they tell you why she aspirating again. I sure hope it is only temporary. I am suree they will figure it out.
Many children are discharged with a NG tube as long as the parents or care giver is trained on it. I have seen children that were staying in the rehabilitation center where Cedric is most of time because the parents were not comfortable with it. I guess that here in DC it is a personal choice or maybe depending on other medical conditions.
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Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps https://www.babiesonline.com/babies/c/cedric1/
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#5
04-19-2009, 03:46 PM
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Hi!
Cheyanne is doing really well now she has her NG Tube in, she had her PH test done on friday and we took the machine back on saturday just waiting for the results now. Hope everyone is ok. Jo
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Jo mum to Cheyanne 5, Samantha 12, Peter 14 and Hannah 16.Cheyanne trached @ 10wks due to suglottic stenosis, spider webbing on voicebox, voicebox closed and polyps (growths on voicebox and in windpipe) now suffering with Petit Mal Epilepsy, drop attacks and absence stares. Mic-Key Button. 1st stage LTR complete. 2nd stage LTR complete. Cheyanne has now got asthma and heart problems. Now trach FREE.
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#6
08-20-2009, 03:20 PM
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cheyanne's update.
Hi!
Just a quick update, Cheyanne had her mlb last week, she has gone back to being a grade 5 and several +'s. Her surgen Mr Albert at GOSH is going to do her LTR in October instead of when she is 4 or 5 yrs old. She has been doing really well until today when she asperated on chocolate as she has been told that she swallows late, seeing someone next week about her late swallowing and what they are going to do about it. Jo.
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Jo mum to Cheyanne 5, Samantha 12, Peter 14 and Hannah 16.Cheyanne trached @ 10wks due to suglottic stenosis, spider webbing on voicebox, voicebox closed and polyps (growths on voicebox and in windpipe) now suffering with Petit Mal Epilepsy, drop attacks and absence stares. Mic-Key Button. 1st stage LTR complete. 2nd stage LTR complete. Cheyanne has now got asthma and heart problems. Now trach FREE.
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#7
08-20-2009, 03:40 PM
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jo - great news about the LTR! do they think it will just be one op?
x to cheyanne.
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*clare. mum to emily  12/02/07 (placental abruption)APGARS 0+1 (HIE gr.2/seizures) but she MADE IT! with the determination that we still see in her every day. Grade III SGS - emergency tracheotomy July 2007. 2 stage LTR July 09 - DECANNED 27.9.09 tracheomalacia (GONE!! Sept08) partial agenesis of the corpus callosum residual VSDs post-surgery but lung pressures normal (Nov08), ?septo-optic dysplasia. 
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#8
08-20-2009, 06:02 PM
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Good to hear that they will do the LTR sooner than expected. Hope you can get her aspirating under control.
It is a personal choice for the hospital staff if they will discharge or not with NG- ours no longer does because too many parents/caretakers damaged the stomache/esophagus (one reason we were in NICU so long) although, I believe once they are discharged and readmitted, they will go home w/one from the other icu depts.
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 Lynn, mother of Brooke(19), Haely(17), Sydney(12)Dominic(1) and Joseph(DOB 11/03/06)DX:Jeune's Syndrome:trach 12/12/06:vent depend: Sprinting 12 Hrs a day!!!!EE:GERD:Hydronephrosis:Situs Inversus:Aortic Stenosis:Myocardial Hypertrophy:Kidney Transplant 08/18/10 http://www.caringbridge.org/visit/josephmollica
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#9
08-21-2009, 03:51 PM
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Quote:
Jo.
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Jo mum to Cheyanne 5, Samantha 12, Peter 14 and Hannah 16.Cheyanne trached @ 10wks due to suglottic stenosis, spider webbing on voicebox, voicebox closed and polyps (growths on voicebox and in windpipe) now suffering with Petit Mal Epilepsy, drop attacks and absence stares. Mic-Key Button. 1st stage LTR complete. 2nd stage LTR complete. Cheyanne has now got asthma and heart problems. Now trach FREE.
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#10
08-22-2009, 06:44 AM
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I am ignorant - child with trache 5 years, but what is LTR?
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Cherie Mum to twins (Mitchell and Holly) born 10 Dec 2003. Mitchell's dx is Pentalogy of Cantrells. Trache since January 2005, NG, ventilated on HT-50 and on oxygen overnight. DX includes: giant omphalocele, ASD, GORD, CLD, cleft-sternum, sub-cutaneous IVC and right atrium, muscular defect of central diaphragm, Pulmonary Hypertension, GDD, Pulmonary Stenosis, spinal cord syrinx. Holly is a happy healthy 5 year old!
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