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#1
30th July 2010, 10:22 AM
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ironic PMM
proud mummy moment
just watched Luke unpack his emergency trachy box and 'pretend' to disconnect his ventilator tubing with the disconnect wedge, and inset a catheter into his trachy.  So he doesn't know how to use a spoon, feed himself or have bowel control, but he's reaching his own special milestones. I guess his routines are so different to ther children that he was always going to set his targets to achievements
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 Luke 31+5, 14.09.08 emer c-sect PE/HELLPs: Coarctation of the aorta, PDA, bicuspid aortic valve, hypertension, complex respiratory problems; tracheobronchomalacia, vocal cord palsy, Left hemi-diaphragm, tracheostomy for long term ventilation. reflux, NGfed birth-20 months, now gastrostomy. inpatient SCBU/PICU/Children's Unit: Phased discharge- 1st night home aged 365 days, full discharge 13 1/2 months
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#2
30th July 2010, 12:01 PM
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you are right to see this as an achievement!! theo used to do similar things with his trachy bag and the toys we had trached! well done Luke x
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Theo born 21.07.08 - 29.07 viral myocarditis,heart failure from dilated cardiomyopathy,multiple organ failure, meningitis encephalitis,chylothoraces, stent septostomy, tracheostomy,ventilated 12/24; 10 weeks PICU, 6months LRI HDU home at 9 months!ng fed.transplant assessment GOS. meds - was on captopril and digoxin but kidneys failed.now carvedilol, enoximone, aspirin, frusemide, spironolactone and septrin allergic to amoxicillin! Under Dr Duke Glenfield
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#4
30th July 2010, 09:48 PM
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Aww bless him,
Thats amazing! Well done luke! Love Anne and Sarah xx  
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Anne, Happily married to David with 3 amazing children; Andrew 14 (HH) Hannah 12 (HH) Sarah 16 -Truncus arteriosus type 2, (with conduit + large VSD) had 3 OHS: 1. Replumb of heart 2. Conduit replacement 3. Aortic valve replacment Sarah suffers from migraines and anemia; is on migraine meds, iron tablets and warfarin for her valve replacement, previously been on warfarin, heparin and phenidione(sp) Treated at the Freeman hospital in Newcastle and West Cumberland hospital in Whitehaven, 
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#5
31st July 2010, 07:57 AM
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awwww bless him. ethan was like that with his ng and syringes xx
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Sam Josh 2005 (hh) Ethan 2007; very complex T.G.A VSD Hypoplastic Pulmonary Arteries, Severe Pulmonary Stenosis Septostimy @4 day old. BT Shunt;24/12/07. Rastelli 01/04/10; was ng fed (7wks to 1.5yo) as over shunting/damaged vegal nerve, GORD & delayed gastric emptying; Tight Pylorus Dairy & Soya intollerant. Meds; Asprin, Spironolactone, Chlorothiazide, Captopril Stopped; renitadene, metaclopramide, Milk: Neocate Amioderone, Follow us online http://acardiacmums.blogspot.com/
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#6
31st July 2010, 10:29 AM
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Aww bless him, just show how clever he is. He will reach his other milestones in his own time.
Love Nicole
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 Mum to Liam 8/96 HH, Asthma, Asperger Syndrome,MigrainesHeather 7/98 complete AVSD with common AV valve ,hypoplastic AA, Mitral Valve Regurgetation, PDA,PHT ,4 caths, OH surgeries( 7/98, 10/98, 7/99 & 8/04)Artificial Mitralvalve, 2nd Pacemaker,complete Heartblock, Chylothorax after first surgery Warfarin ,Lisinopril Asthma Asperger Syndrome Sensory Intregration Disfunction Migraines married to Glenn, Gulfwar Syndrome, ME,Asperger Syndrome,uses Wheelchair outside the house
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#7
31st July 2010, 10:34 AM
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See thats why our kids are so great, we get all the extra special milestone that prove what fighters we have got.
Josh gets the hose of his toy vacume cleaner and puts it in his mouth when he is poorly he says itys his pipe to help him breath and make him better ( ventilator) and i am alwaysbeing attached to the sticky tags and pegs ( ecg) when he plays doctors xxx
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Rachel  Mum to Joshua 29/11/06 large ASD, PDA (Closed), TR, Tachycardia Bilateral inter-ventricular haemorrages Right hemipligia - hyper mobile knee/ankles - wears of a cute pair of piedro boots peno-scrotal hypospadias with chordee (repaired april 08), gastro reflux,- thankfully outgrown !! renal artery stenosis, hypertension Drop Fits & Absence Epilepsy on Epilim general devil Under Glenfield, QMC, Kings Mill
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#8
14th August 2010, 04:52 PM
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aww so cute proud mummy moment for sure
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 ErinMum to Niamh age 6 attending regular school (with full time carer) diag. 20 wk scan with Heterotaxia - left atrial isomerisn, atresia & bowel malrotation (surgical correction at one day), two left lungs, trachea adnormality, bronchietatis, uninary incontenience, absent spleen, gastro-oesephageal reflux, aspiration of liquids, coroanry sinus rhythm, PDA delayed closure, inferior vena cava abnormality, persistent chest infections & pneumonias, possible PCD & Charlie aged 3 HH
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