Support for Connor Reilly

In March 2021 Connor picked up the flu which unfortunately went to his lungs. He was admitted to hospital when his breathing became rapid and he was struggling to breathe . He was later moved to High Care and put onto oxygen and a drip. His little body started to weaken as he was unable to eat.

A few days later everything got a lot worse. His respiration deteriorated which prompted the paediatrician to assist in hooking him up to an Oscillator (Oscillator is one up from a Ventilator). During this process though, Connor's heart stopped. The paediatrician and nurses spent over an hour trying to resuscitate him, with 6 shots of adrenalin and constant CPR. It is suspected he didn't have oxygenated blood going through to his brain for around 1.5 to 2 minutes. Connor was fortunate that the nurses and paediatrician were around as it happened. Unfortunately though when Connor went into Cardiac Arrest he sustained some brain damage, the extent of the brain damage at that stage was not known.

Once he was eventually stabilised 3 hours later, Adele & Garth could see him. He was being kept sedated as the Oscillator requires a tube to go all the way up Connors nose down his throat and into his lungs. This is extremely uncomfortable, especially for a 2 year old. The Doctors had to keep him sedated to prevent the risk of him pulling the tubes out etc.

Garth and Adele eventually left the hospital in the early hours of that morning as they were unable to stay with Connor at the hospital. About 2 minutes before Adele & Garth arrived at the Hospital the next morning, Connor started having seizures caused by the brain damage. He was immediately surrounded with ice packs to try bring his core brain temperature down (which causes the seizures). At the same time, they started to arrange an emergency Helicopter Evacuation to transport Connor from Kloof Hospital to Garden City Hospital in Johannesburg. Unfortunately due to bad weather the Helicopter was unable to fly, so he was eventually transported by ambulance. Garden City Hospital has the best equipment and Paediatric ICU unit to deal with Connors condition.

Once at Garden City Hospital he continued having seizures up until about 15h00 that afternoon, until they got a Thermo Blanket on him and managed to cool his body down properly. His body was "set" to 34.0 degrees celsius, which keeps the core brain temperature at 35 degrees celsius. The seizures stopped after this. He was kept sedated due to the cold temperature they were keeping him in and because of the tubes going down to his lungs. They also installed a "Bolt" to monitor his brain blood pressure, and brain blood flow which Adele and Garth had to give special permission for.

Connor stabilised after that, however was still experiencing lung spasms which doctors suspected was as a result of the RS virus he'd picked up initially.

The Doctors didn't want to keep Connor "cooled" or sedated for too long, as this can also have complications down the line. They eventually were able to wean him off the seizure meds without him experiencing any more seizures and 5 days later (which isn't ideal) they were finally able to start the process of warming his little body up, once his stats had stabilised.

A week later the doctors removed all sedatives, but kept him asleep as he still had the tubes down his throat. The Doctors wanted to allow for his brain to wake up slowly. As the sedatives slowly started to ware off, Garth and Adele were comforted to see his colour return, some movement in his limbs and twitching in his eyes.

Due to being immobile for 11 days, the doctors gave him some medication to prevent his muscles from going spastic. They also started to give him physio.

At this stage, the extent of Connors Brain damage was not known, as the results from the MRI and EEG tests had not yet come back.

Connor took a while to wake up which started to concern the Doctors. They removed all medication which may have been preventing him from waking up fully. His lungs however continued to strengthen and he was eventually removed off the ventilator completely which would allow doctors to start working on his eating, swallowing, speech therapy etc.

The MRI & EEG tests eventually came back and indicated that there had been extensive brain damage around his occipital lobe. This is the visual part of his brain. Connor's sight and personality were severely affected.

Unfortunately Connor's breathing became laboured again which promoted the Doctors put him back onto the ventilator. He remained on and off the ventilator for 3 days until he was stable enough to come off it again.

Once off the ventilator, the speech therapist, Garth and Adele (who were able to hold him for the first time since this ordeal started roughly 20 days earlier) started to get Connor to eat. (yoghurt and mashed up banana). This process looked promising.

As things improved, he was able to be transferred to a rehab centre where he'd receive therapy which is much more focused on his recovery. The focus would be to try stimulate his brain again, but not over stimulate it (which causes it to go into shutdown). It's a careful balancing act which the dedicated staff at the rehab centre are equipped to perform.

He was given a roller splint for his hands to keep his hands slightly open to hopefully prevent them from going spastic. The muscles in his limbs were a concern to the doctors and causing him incredible discomfort.

AFTER A WEEK AT REHAB:

Garth & Adele had a family meeting with all the therapists and doctors who had been assessing Connor over the last week or so since he was admitted to the rehab clinic.

When it comes to cognitive levels, there are 8 levels of cognition. Level 1 being absolutely no cognitive response to anything. Connor is currently assessed to be sitting between level 2 and level 3. With therapy, Connor may move up through the levels, but it will all depend on how severely his brain was affected, and its' ability to create new neural pathways etc. He could progress all the way to level 8, or he could progress to a certain level and then stay there.

With regards to his vision, there are 3 levels. As suspected, he is on level 1, the most severe. He can distinguish light and dark, but those are the limits at the moment. Again, with therapy, and the extent of the damage on his occipital lobe, he may or may not progress through those levels of vision.

His spasticity is his biggest concern at the moment. His arms and legs are extremely tense, and causing him immense pain whenever he is awake. When awake, he is almost constantly moaning.

It also seems like he will need a Peg (to feed him through), as he is not eating too well either. This is likely also caused by the spasticity, which can affect internal organs too, like his stomach, intestines etc.

A DEFINITE DIAGNOSIS TO WORK WITH:

Connor went to the paediatric neurologist on Tuesday 4 May where Adele & Garth were told some hard truths. He has and will have Cerebral Palsy for life. He may not be able to talk, but should be able to communicate in other ways IF his sight comes through the extensive rehabilitation therapy. He should be able to smile. He may or may not need nappies for the rest of his life.

He is going this for an operation on Wednesday 12 May for botox injections (over 40 to 50 different locations on his body, because the spasticity is causing him immense pain at the moment, and the longer it continues, the greater the chance of permanent damage). During the operation, they will also put a PEG into his stomach, so they can feed him through that now.

Update: The operation took just over 90 minutes and seemed to have gone well. Connor had inflammation in his stomach which is now also being treated. He continues to be in pain and after the op experienced 3 hours of spasms in his back, which hopefully once the botox starts to work, this will start to get better. The botox takes up to 6 weeks to fully start working. His oxygen level dropped again, so he was put back onto oxygen which the doctors were hoping to wean him off over the next few days. Conner returned to the Rehab Centre that same day.

YOUR SUPPORT:

It is still too early to know what support Connor will need in his life going forward, but it is likely to cost a significant amount of money. This page has been set up to collect funds to help Garth and Adele give their boy the best possible care he needs.