Where to start..
My Billy was born 4 weeks early in October 2011, my partners waters broke they wouldn't examine her being only 36 weeks so sent her home with a strong antibiotic to prevent infection to her..and she had no pains until 54 hours later 1 pain.. a mad dash to the hospital almost didn't make it, got there his heart rate had dropped low so he needed to be out very fast, the whole delivery was over... within about 2 minutes and Billy came out purple, im not kidding i mean his full face was a bruise, his eyes were blood shot etc..
The day after his birth Billy was allowed home.. (even though his hands/wrists were deformed and kept shaking uncontrollably!)
The midwife visited the day after and said he needed to be readmitted to hospital for severe jaundice..
2 days old he was readmitted for the jaundice and had a lumbar puncture which showed the spinal fluid was yellow so they treated him with a 5 day course of antibiotics for sepsis, and he had intensive jaundice treatment which failed to keep Bilirubin levels down..he also had an ECG showed he had a hole in his heart, He was allowed home after 6 days in hospital but had to return several times after to see how the bilirubin levels were doing.
Since then... He has been diagnosed with Laryngomalacia..
This is in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction, causing him to have extreme noisey breathing, and what they call a "musical stridor" which makes him sound like a seal !!
He has been diagnosed with Gastroesophageal reflux disease - a condition in which the stomach contents (food or liquid) leak backwards from the stomach into the esophagus (the tube from the mouth to the stomach). This action can irritate the esophagus, causing heartburn and other symptoms, He has had a chronic bronchial cough for 4+ months due to this and 5 chest infections so far.
When he was almost 4 months grandad noticed a problem with his eyes, not tracking, or following, so we saw GP who contacted James Cook who fast tracked an appointment, the opthamologist said he showed no sign of being able to see so they fast tracked an appointment at Royal Victoria Infirmary in Newcastle where he had a Visual Evoked response test (measures electrical activity in certain areas of the brain in response to stimulation of certain groups of nerves) His results came back to his specialist - Dr Soeldner/James Cook, the results showed the problem was in the wiring in his brain and he requested an MRI scan, but also discovered he has Optic Nerve Hypoplasia (underdeveloped optic nerves)
In the time waiting for the MRI appointment he started having seizures, which my partner once again diagnosed b4 the GP/Specialists as Infantile Spasms, he was admitted into James Cook for the seizures and had his first EEG, this showed Hypsarrhythmia - an abnormal interictal pattern, consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity seen on electroencephalogram (EEG), frequently encountered in an infant diagnosed with infantile spasms, although it can be found in other conditions. In simpler terms, it is a very chaotic and disorganized brain electrical activity with no recognizable pattern, whereas a normal EEG shows clear separation between each signal and visible pattern. So I was then diagnosed with Epilepsy.
So they began steroid treatment the following day he had 6 tablets (30mg) of prednisolone each morning, this got the seizures under control within 5 days which is really good but we were praised for picking up on the fits as quick as we did otherwise they would have been much worse and harder to control..
He had an MRI scan and the results of this were very unexpected, and heartbreaking for all my family. while in utero (or up to 4 weeks old) he suffered a really bad stroke (they say the probable cause was a blood clot travelled through the hole in his heart up to the brain) and this left the full left side of my brain dead, the dead tissue has been replaced by fluid.
This has left his right side useless, he cannot see his right arm is not being used and starting to seize (starting physiotherapy soon to try help it keep moving to stop the tendons seizing completely) we have been told he probably will not walk as his right leg wont be strong enough, And he will not be able to talk, if he does with the help of therapy it will be very delayed.
He will need constant daily care, he cannot be left unattended in case of seizures, or a further stroke, and his development level will be very slow, he is on levetiracetam twice daily for the rest of his life , this is an anti-epilepsy drug which helps prevent seizures from happening, and has side effects of sleepiness and dizziness. he will need extra stimulation in alot of ways to try and get the good side of my brain to help him develop, Billy will need intense physiotherapy to stop his muscles and bones from deteriorating and speech therapy to try and help him talk, they said i will be wheelchair bound also but we are determined to prove them wrong !!