Ethan Dante St. Sebastian Cole
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My son was diagnosed at 9 weeks of age. He first presented to hospital at 5 weeks with breathing difficulties, was misdiagnosed and suffered respiratory arrest. Eventually, surgeon diagnosed grade 3 congenital subglottic stenosis. He is now 18mths, and due for surgery on 28th march 01. However he had another respiratory arrest 5 days ago, he has pneumonia and having antibiotics through a cannula in his foot. I can only pray he recovers in time.
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Ethan had a one stage tracheal reconstruction on march 29 01. He was kept sedated on PICU for six days and was ventilated, the trach was removed during surgery. When he was awakened and the intubation removed he maintained a good airway, however he had terrible withdrawal from the drugs, suffering hallucinations and nightmares. After 6 days on the general ward he was transferred back to local hospital. The following day I noticed Ethan had a stridor, major warning sign, was told it was swelling, Ethan's in no danger. But, struggling to breathe was admitted to PICU for observation. Returned to general ward next day, stridor continued for the next 7 days even though he was receiving steroids to reduce the swelling. They assured me it was safe to discharge Ethan and after updating CPR skills, I took him home last Tuesday. His pulse ox showed sats of 88 - 91. I contacted the hospital, they said Ethan spent too much time on the ward, to persevere and see how he gets on. The following day Ethan slept for 2 hours, he awoke very distressed and arched backwards. He then had respiratory failure at home. I did CPR and called paramedics, he had a seizure and his jaws locked. He was revived and admitted to the ward. No one believed me, they said he'd probably fainted. I was so angry. The following day, Ethan had 2nd arrest on the ward. His stridor had worsened. He was taken to the PICU where they intubated. The smallest tube was a struggle to insert. Immediately rushed to theatre, they found the whole reconstrution had collapsed, and the rib cartlidge had pierced his windpipe. The trach was replaced. He is so much better now. He is to be scoped in 10 days, then I do not know what they will do, but I will find out whose neglect this lies with. I do not feel that I want further reconstrution. I am devastated that this could happen and no one know until a second arrest. I nearly lost my little boy twice in less than24hrs.
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Ethan's post-op Photo
Update May, 2001 - After a very traumatic time following Ethan's 1st reconstruction, I was booked into the Peter Pan Ward in Great Ormond Street Children's Hospital, London, under the care of Dr. Albert, Ethan's consultant and surgeon, where I gave very strong words on the disastrous outcome of the 1 stage reconstruction, I was strongly advised to have a 2nd attempt with the rib cartridge, and only consented on the condition that the trachea remained this time. This was agreed, and Ethan now has the rib cartridge reinserted, and a stent in place for support. The consultant admitted that the 1st graft was not stitched into place, as he felt it was such a perfect fit it did not require any, and that the graft had simply popped out of place and obstructed 50 per cent of the airway. I asked if that was what he would of written on the death certificate, as it was more serious than his simple explanation, he was very apologetic. The stent remains for the next 6 months and a scope is planned in 3 months. Ethan is doing much better now, and is learning makaton, the sign language, and his smile has returned.
Update August 2001 - The graft was replaced for the second time, however it has collapsed again and the graft is poking in his neck, it seems as though it may burst through. He had a very bad croup virus 2 weeks ago and had 4 respiratory arrests... we are returning to London in a couple of days to re-access Ethan's condition. We may be looking at a 3rd reconstruction, and they may have to take a 2nd rib graft. He has been quite ill with a high fever for the last 4 days.
Update September 2001 - He is underwent mlb, stent removal?, ktp? mmc?? on the 4th Sept 01. This means we may get a speaking valve, and then we will know how successful the graft has been. I am trying to be positive and optimistic, however I am well aware that these children are far from predictable, and anything can rear its ugly head. Ethan is signing so well, he's a very communicative little boy, and I am proud of him. He has pulled his trach tube out, but was quickly replaced. He has been diagnosed with pneumonia and another mrsa. He still has regular infections and has been on antibiotics for the last 5 days. We celebrated his 2nd birthday last Monday, a milestone for us all. Thanks for your support, the trach book has been like a bible for me. I keep it by his bed . Please could I also express my sorrow for America's recent atrocity, God bless them all. I hope your family and friends are all well and safe. I remember you in my prayers. All my love Julie and Ethan.
Update January 2002 - On Nov 01, Ethan went to great Ormond Street for a repeat MLB. I asked for photos of Ethan's airway, it came to my attention that Ethan was born with only one vocal chord, this may now mean that he is no longer a candidate for a speaking valve, and has been offered the communication board. I intend to defer further surgery for the next twelve months. He needs a break from it, and is to be assessed for special needs schooling. I will let you know future developments, I am just amazed that it took two years to disclose this birth defect.
Update May 2002 - It seems Ethan's vocal cord was not missing but is damaged due to mild atrophy, this could of been caused by either the stent being in place for 6mnths or the emergency intubation during the graft collapse and 2nd trache formed. it seems that he has also got a delayed swallow trigger, so food and drink leak through the trache, this is every time he takes food and drink, not occasionally. I was told this might be caused from having the trache for so long and from a young age. there is no definite answers as yet, but the one stage reconstruction needs to be repeated , and they plan for this in the next 3 months. However, due to full theatre lists this may not be the case and it may take longer. Also, Ethan is MRSA positive. He is very well at the moment though.
Update September 2004 - Ethan still has his trache and has been found to have incomplete closure of the epiglottis. He has gone under the care of the aspiration clinic at Great Ormond St, and has been scheduled for an high resolution CT scan. They have found bilateral bronchial wall thickening, and I have been told this is not related to long-term trache placement, therefore Ethan is to have a gastrostomy (LTR, will not correct the problem). But we must be aware it may worsen ie, affect the food swallowing, leaving Ethan totally nilby mouth. He is to undergo counseling prior to the gastrostomy to help him understand what's happening to him. He has been on continual antibiotics for repeated chest infections and as a preventative measure. He is not coping as well as he used to. Good news however, the MRSA has gone without treatment. A nurse stated she believes he has developed his own immunity to it..!
