|Illness:|| CLD, CRF, Pulmonary hypertension, IGF1 deficient. Hypo-glycemia, Intestinal Pseudo obstruction and Eosinophilic enteritis, severly deaf, hypo-tonia, R
Theme: Noah's Ark
Quilt delivered: 17th Jan 2011
Lennon's quilt arrived this morning, thank you so much, it is amazing! I can't believe the detail and time and effort that has gone into making it. I am truly touched that you all have gone to so much effort for Lennon.
Thank you so much,
Sadly, Lennon passed away in August 2017 :(
Lennon was born 12 weeks premature. He was transferred to Chelsea and Westminster when he was 2 days old, for 6wks, as he needed an oscillating ventilator. During this time he had respiratory failure, a suspected bleed on the brain and a severe kidney infection which resulted in him only having one functioning kidney. He was transferred back to our local hospital only to suffer respiratory failure again. We were told by our local consultant that Lennon would be ventilator dependant and we waited for a bed at GOS for further tests. On arriving at GOS, Lennon had cardiac surgery and came off the ventilator. We were transferred back to our local and then went home. Lennon then suffered respiratory failure again, and in the 6days he was at home we resuscitated him 3 times. He was re-admitted and transferred back to intensive care at GOS. This happened again only the next month. Lennon came home when he was 9months old, with 24hr oxygen and a gastrostomy, as Lennon has no swallow. We had quite a stable period at home, with lots of outpatient appointments at GOS Ã¢â‚¬â€œ Lennon is under 11 of the teams at GOS. And lots of therapy at home. Lennon is immuno-compromised so we very rarely take him out in busy places.
Just before Lennons 2nd birthday his bowel begun to fail. He became severely constipated, despite all the medication he was taking for it and he begun being sick every time we fed him. Lennon stomach could only hold 50mls of milk in one feed, so we were feeding him every 2hrs. It came to a head on Christmas Eve and Lennon was admitted to our Local hospital to give his bowel a rest. He went onto iv fluids and was closely monitored due to his chronic kidney failure. We failed to restart feeds again and were transferred to GOS. After a lot of tests and investigations, Lennon was diagnosed with Intestinal Pseudo obstruction and Eosinophilic enteritis. We went back to our local on TPN and waited for a bed on the Gastro ward. Whilst waiting, Lennon got a line infection, and then RSV, and was transferred to intensive care at Addenbrookes. When he first arrived, we were again told to prepare for the worst. If Lennon deteriorated further, he would not survive. And in true Lennon style, 2 weeks later he surprised everyone and was taken out of ICU. We finally got a bed on the gastro ward at GOS and Lennon was given a gastro-jejunostomy feeding tube and slowly came off TPN and onto a 24 jejunal feed with his gastrostomy on free drainage to clear all the green bile and air he was producing. We came home again in April 2009, on oxygen and this time with a 24hr feed running into his jejunal tube.
Since then we have been in and out of hospital for procedures and tests as Lennon developed Hypo-glycaemia while he was on TPN, as yet they cannot find the cause for this, so Lennon remains on a 24hr feed. If Lennons health deteriorates in any way then he has to be admitted too. He has had various Genectic test, most have come back negative and we are still awaiting results from the last test for Schinzel-Geidion syndrome.
Lennon attends outpatient appointments at GOS almost every week. And now goes to nursery at a SLD school, which he loves!