Finley is my beautiful little trouble maker.He is my youngest child and the one who showed me how hard life can be if you dont fit into a diagnosis box. i thought a page would be a good was for our family and friends to keep up with what is happening with us all. Updates from hospital stays and visits and to also maybe spread a little awareness of life with an invisable illness and living with no diagnosis. For new friends, Finley was born at 35 weeks by emergency c section due to fetal distress, prom and sepsis. He was a good weight but very poorly. He was 6lb 10oz – the biggest baby in intensive care, but the sickest. He wasn’t breathing on his own and we don’t know how long he was like this for. He was put straight onto a ventilator on high setting and at one point on 100% oxygen and still not adequate. He was given two doses of surfactant to try and help his lungs to move. They called this respiratory distress syndrome and told us that we should come and see him. He was on the ventilator for three days and then oxygen for another day and then nothing – my super-duper baby. This time our consultant presumed reflux so they took feeds slowly. After 2 weeks he was able to feed from a bottle so his feeding tube was taken out and we were able to take him home. Five days after coming home I found Finley blue and not breathing in bed. We rang 999 and got him to hospital and it was then that they said it could have been an ALTE (apparent life threatening event) and in our case probably caused by reflux. Our consultant gave us omeprazole and domperidone right away and when she seemed to be choking on feeds she gave us thickener. Finley continued to choke on feeds and get chest infections but it was only when he caught bronchiolitis before Christmas was this taken seriously. The last year haven’t been very good for Finley. He has been tube fed via a nasal gastric tube and then via a gastrostomy since he was a couple of months old with little problem, but then about 18 months ago we started getting problems at night and had to start using Farrell valve bags to help vent his tummy to stop it hurting. Then a year ago his stomach seems to just stop working. All of his feed would just pour out into his vent bag, it started leaking out of his gastrostomy stoma making his skin sore. He also started to get very bloated and complaining of tummy pain. “I hurt” is heartbreaking to hear from a 2 year old who has only a few words. Pain shouldn’t be one of them really. He’s also had what looks like an allergic reaction to everything, he has been getting red rashes, lip swelling, blotches all over his face, dry skin. He has no known allergies so this has all been the mystery that is Finley. 8 months ago we went to theatre and had a gastro-jejenal tube fitted so that we can feed into his small bowel instead of his stomach, this allows us to get feed in and to also be able to drain his stomach when he is complaining of pain or gets bloated. He has also had an mri scan to check for cerebral palsy, but we had the results from Finley’s brain scan and it wasn’t as we thought. They originally scanned him to check for damage due to his birth, but instead of finding that they found a large mass that is taking up a large part of his left temporal lobe, a large left middle cranial fossa arachnoid cyst. This has been so upsetting as we really expected all to be well. It has thrown us into a whole new set of doctors. We now have neurosurgeons to visit who keep an eye on him for increased pressure or cyst growth and Finley needs to have special eye tests due to the positioning of the cyst (which is sitting right behind his eye) to make sure his sight is ok and the pressure is ok. He will have hearing tests to make sure the cyst isn’t interfering with that and then rescan to see if this thing is growing in there and if so it might mean brain surgery. Always terrifying. This is all on top of the fact that we have problems with low muscle tone, hypermobility, a mild global development day, speech delay but catching up really well, he also have blue sclera which is when the whites of the eyes are blue. he has persistant tachacardia which is just a high heart rate. He has probably Ehlers Danlos syndrome type 3. This would account for some of his issues but not others so this is just part of a diagnosis for my wee chap. It is all just so much more than we are used to as parents, we can deal with the tube feeding and the gastro surgery but this is a whole new and scary ball game.
Posted on: Sat, 05 Oct 2013 20:02:30 +0000