Ethan's Story

***ETHAN'S UPDATE***

 

Ethan Went in for his VP Shunt Surgery 3rd May. He Went into surgery at 12 and came out at 2. The surgery went well and we couldn’t wait to see him. Once the anesthetic started to wear off Ethan was in a lot of abdominal pain where the VP tubing was place into his peritoneal. This is where the fluid will be reabsorbed as the scaring to brain meant his brain can’t. He was tolerating his feeds and we soon noticed that his coordinating was starting to improve by the minute despite the pain he was in. By the next morning his pain levels had reduced and he was Discharged home with pain relief medication and open access to oxford neuro.

17th May Ethan had blood tests and an ECG Test in Kettering. The blood tests were metabolic and genetic to see if there is anything wrong with his genes and individual chromosomes. The ECG was to make sure there wasn’t anything wrong with his heart after the sepsis had affected it. We were very pleased that all these tests came back ok but it still gave no answers to what is wrong with our little boy. His ECG was a huge weight lifted, especially after the sepsis had caused his heart such difficulties so early on in his life. The next day, 18th May, Ethan was admitted back into Skylark after the blood vessels in his arms has burst due to how weak they now are after all the trauma they have had done to them, something they need to be careful of in the future, but he was well enough to be discharged the same day.

​

13th June Ethan’s breathing started to deteriorate and he suffers more prolonged apnea’s than normal. We took him back to the doctors to check his stats and chest. His stats were lower than usual and his chest was worse than normal but he didn’t have a fever so we needed to monitor him closely and if he didn’t improve then he would need to go to the hospital. Within a few days, 16th June, Ethan was taken into hospital, again… they did a chest x-ray that shown more mucus on both lungs but luckily there was no sign on any collapse. They gave him some waves of oxygen and he seemed to pick up so he was sent home. All we want is for our little boy to be healthy. It’s so upsetting to see him go through all this….

​

1st July…. Ethan didn’t seem himself at all. I was so worried about him. He was recessing with his lungs, a sign he is struggling to breath. He developed a high fever and was very very unsettled and sleepy. Totally out pf the normal for him, he’s always so happy. During the evening we noticed a rash appear on his arms, then both arms… We ran a glass over then, and sure enough, the rash didn’t disappear, so we phoned Skylark and took him straight there. By the time we arrived the rash was on both legs and a small patch on his belly. They observed him for a while a decided it seemed like Viral Meningitis…. My heart just sank… how can life be so cruel… like he hadn’t been through enough…. He wasn’t feeding and still had a fever, and just wanted to sleep. Because it was viral there wasn’t anything they could do for him and sent him home where the nurses we have came out to check on him till he seemed better.

​

24th July Ethan had a test called a Loopogram where the insert a dye into his fistula and watch it go through the bowel to make sure the part of his bowel left unused was still healthy and he could have the reversal operation to attach his bowel back together. The test went really well and they were happy he would be able to have the operation but due to his other health problems he was referred to the high-risk anesthetist who would asses him fully before the operation in September.  Unfortunately went we saw the anesthetist, 11th August, they said Ethan would no longer be able to go through the operation due to his lung and respiratory issues, he may not survive the operation as his respiratory is too severe…. We were devastated.

​

13th September… a horrific day. Ethan’s skull is very fragile due to the pressure from the hydro and the weakness from his neurosurgeries and is high-risk for injuries. Unfortunately, Ethan very slightly knocked his head as he can now roll over and was playing with his sister, he only slightly caught it on a toy, he didn’t cry, and he didn’t even have a red mark, but after a while he started to develop a lump with was the same consistency as a balloon filled with Jelly, something we had been warned to look out for. We took him straight into Skylark again…. Ethan had a Subdural Hematoma, a Type of bleed on the brain. Luckily the bleed leaked out the ETV hole and formed a big blood clot on the outside of his skull instead on underneath. Words just aren’t enough to express how we felt, it was like someone was physically tying knots into my stomach and squeezing chest. I felt like I couldn’t breathe. Our beautiful little 9 month old boy had a bleed on the brain and a blood clot… yet he couldn’t stop smiling. He has a strength that I admire so much. As a parent all you want to do it take all this away from your children, yet we just had to sit there and listen to the tests they needed to do to make sure it hadn’t caused further damage. Ethan had a skeletal x-ray, totally 24 x-rays that day, a CT Scan and drops to dilate his eyes to see if his eye sight had been damaged too. Everything came back normal and we just cried with relief. He stayed in for monitoring and was discharged within a few days.

​

25th October Ethan had his review with his pediatrician, an appointment we were waiting very nervously for. Ethan had a lot of delays in his development and so many unanswered question. During this appointment we were told Ethan had glue ear, but as his hearing was okay they would just monitor him as he’s a risk of hearing impairments. A resent Ultrasound shown fluid on his left kidney, but again, we have no answer as to why. But the worst news of all was the news that Ethan has Hypotonia causing Hyper-mobility and Hyper-flexibility, along with his speech (or lack of) and his absent seizures, they will need to look out for other signs of cerebral palsy…… I must have gone home and cried for hours that night and I promised Ethan we would do whatever it takes and whatever he needs to give him the best possible life. No child should be face with the difficulties Ethan has and still is going through everyday…

​

December Ethan started more intense physiotherapy and speech and language. Due to the difficulties with chewing, swallowing, and speech, he need to learn how to chew, has special cups, and need to go for a swallow test. But his speech is more difficult. We now learn British Sign Language, which is helping so much keeps Ethan more content as he finally has a way of communication. To help with his muscles, he also has a Lycra abdominal support specially made for him with a hole for his colostomy bag to come through. This is to be worn to help with Physio has he started crawling he has bad rotation in his joints and curving his spine. Ethan Hypotonia doesn’t improve despite his growth in development and causes him discomfort and makes him very tired, but we are determined to help him, whatever he needs and whatever the outcome may be…

​

2nd January Ethan was admitted into Skylark following another bump to his head due to losing his balance and falling backwards. He had a type of seizure caused by shock and once they were happy that it hadn’t caused any side effects he was sent home.

​

It’s very hard to think about what Ethan’s future will be like. Due to his muscles he needs specialized equipment, like a special needs pushchair, special needs car seat, and so on. We have already been told that if he’s able to walk he will need splints and a walking frame, and shoes adapted to stop his feet/ankles rotating. But we don’t know if he will walk or be able to speak properly or what he will be able to do. But Ethan is such a happy boy despite his daily struggles with breathing, absent seizures, and his difficulties with mobility. That smile rarely leaves his face. He has more courage and determination than anyone I know and I am so proud of the way he take all this in his stride. He’s an inspiration to us all xxxxxx