Sunday, May 29, 2011
We are excited to bring you another life story written by the parent/caregiver of one of our amazing bees!
Two days after we got home from hospital, Noah became very irritable. Jalen had reflux when he was a baby, so we thought we were unlucky to have a second baby with reflux and tried all the remedies we could think of. A GP even sent us off for a barium swallow, which confirmed that he had reflux so he went on different medications, but nothing helped. It seemed that whenever Noah was awake he was screaming uncontrollably. He would arch back, stiffen his whole body and nothing we would do would relax him. If he would wake in the night for a feed he would have a little feed and then scream solid for two hours before eventually wearing himself out and going back to sleep. Nothing could consol him.
When Noah was around 4 weeks I kept waiting for his first smile. This didn’t come and he continued to scream. I also started to show him toys, hoping that he would start to follow them with his eyes, but it seemed that he was so upset by the ‘reflux’ that he couldn’t do anything except scream. Finally after 5 or 6 weeks of trying different medications for reflux we were referred to a paediatrician, but was three weeks before we could get an appointment to see him. Noah was now 9 weeks old.
I took Noah into the paediatrician’s office and he asked me if that was Noah screaming in the waiting room. I told him it was and he said ‘it definitely sounds like we have a very unhappy boy’, and asked me a lot of questions. I told him how Noah would start to settle after screaming for hours and then he would ‘yawn’ and arch back and then scream again. I told him how he vomited all the time, and how he would hold his hands in fists all the time. I told him how he always had his body turned or twisted to the left side.
After examining Noah the paediatrician said that he wanted us to get some tests done – EEG, MRI, and a CT scan. He said that he thought that Noah was ‘fitting’ (having seizures). I was shocked as I thought I was taking my baby in with reflux, but was being told he may have and asked when he wanted the tests done (thinking that he would say next week) and he said ‘today’. I couldn’t believe that he wanted them done so quickly and I asked if it was okay if we did them the next day as I wanted to go home and tell Aaron first and process what we were being told, and he said to come into hospital and he would arrange everything.
I went home and Aaron what he said and said that it sounded like he may have epilepsy and we were of course upset, but thought things would be okay. The next day I took Noah into hospital. One of the nurses took Noah from me to ‘give me a break’ and took him up the hall so I could fill out the paperwork with another nurse as we were being admitted overnight. I could hear him screaming up the hall and knew exactly how to settle him quickly but the nurses insisted that I have a break and ‘relax’, but I couldn’t as I knew that I was the only one who could settle him.
That afternoon we had a CT scan done. The man doing the scan kept asking me lots of questions about my pregnancy and birth asking me if I had a traumatic birth etc. I told him that everything was fine and he went and got a doctor to take a look at it. They both looked at the screen very concerned and I heard the word ‘haemorrhage’. They told me that the results would be given to my paediatrician who would talk to me about them later on and it was then that I really started to worry as I knew something was very wrong.
Later in the afternoon our paediatrician came to see me in the hospital and told me that they wont know anything for sure until the next day after they did an MRI, but it did look like there had ‘been a change in his brain’. I asked if it was serious and he seemed to avoid my question and just said that we would know more the next day.
The next day we had the EEG and MRI done. A resident doctor from the ward actually came with us when we had the MRI done, and I knew that it was pretty serious, and he wouldn’t look at us very much, and kept saying ‘you know there has been a change in his brain right?’. Finally our paediatrician came onto the ward in the afternoon and took Aaron and I into a room to tell us the news. He showed us some scans of a normal brain. He pointed out the white and grey patches and showed us that a normal brain has lots of white and grey showing the parts of the brain.
He then showed us the scans of Noah’s brain and said that when I was pregnant with Noah it looked like he had a stroke which caused him to have a lot of fluid in his brain. He showed us how dark Noah’s brain scans were compared to a normal brain, and pointed out that this was the fluid. He said that there was no way of knowing why it happened especially as I don’t smoke, and don’t drink alcohol and am healthy.
We sat in disbelief as we listened and I said ‘so he has brain damage’? He said that he did and that there are different degrees of brain damage – ranging from someone who is developmentally delayed to someone who is reliant on others for everything. He said that Noah was at ‘this end of the range’, and he motioned with his hands showing us the left side. I asked ‘you mean the worst end?’ and he said ‘yes’.
He then told us that Noah would never walk or talk, will never be able to go to the toilet on his own, is probably deaf and blind, won’t be very responsive to us and will rely on us for everything. He also said that his body would become stiffer as he got older.
I listened to this and although I was shocked and sad I actually felt relieved as I knew that there was something wrong with him, and was glad to finally have some answers. Our paediatrician then said that because of the amount of damage to Noah’s brain, that Noah’s life expectancy would be greatly shortened.
I asked him how long he expected he would live for and he said that you couldn’t really say. I kept pushing for an answer and asked if he would live to be a teenager and he said that he wouldn’t. I then asked him again how long he would live for and he still didn’t want to give me a figure. I said ‘well, will he live to be one or live to be twelve!?’, and he then said ‘probably two to four years’.
Aaron and I sat and cried together for a while as we tried to take it all in. The doctor told us that his condition was called ‘hydranencephaly’ – ‘hydran’ meaning water or fluid and ‘cephaly’ meaning brain which meant that the brain was replaced with fluid. So instead of him having where there is a build up of fluid inside the skull, most of his brain was actually gone and replaced with the fluid. Some kids with hydran suffer from hydrocephalus as well, but Noah has been lucky and hasn’t needed a shunt, but has instead (a small head).
The same day the doctor started him on phenobarb for his seizures and we took him home the next day. About two days later Noah was a completely different boy – he no longer screamed all day, but actually made baby sounds and even smiled now and then. We realized that most of the screaming was because of the seizures he was having and the phenobarb definitely helped him.
Because of his condition he has many health issues. He suffers from spastic three month old baby. Because he can not move, he relies on us to move his body for him, both day and night to not only keep his muscles and limbs moving as much as possible to keep his muscles loose and for comfort, and also to relieve any pressure on his body to avoid pressure sores. In the past he has needed treatments such as Botox injections to relax his muscles, followed by serial casting for six weeks at a time. and uses a wheelchair full time. He can not sit up at all or control any of his movements. He has been assessed as to having the physical and mental development of a
He is fed continuously using a pump via a PEG tube day and night. When he was four months old he just stopped breast feeding one day and could no longer feed orally. The doctors said that he was just worn out from feeding and after trying to train him to feed with a bottle, a ng tube was inserted. A month later a PEG tube was inserted and since then he has been fed via the tube as he started to aspirate whenever he was fed orally.
Noah suffers from aspiration pneumonia and hospitilisation. He needs to have medication five times a day including up to eight different medications for seizures, , secretions and constipation. Because he doesn’t feed orally he requires oral care numerous times a day, and needs to have his mouth swabbed and cleaned frequently. (reflux) and has had an operation called a Nissen Fundoplication to prevent him from aspirating (which he often does), which results in
He has a lot of lung issues and has acquired which is destruction and widening of the large airways. Because of this he requires four treatments every day via a nebuliser which also includes physio sessions twice a day of postural drainage to remove bronchial secretions, which is done by us, or his carers or aides when he is at school. These sessions take up to twenty minutes morning and night. He requires suctioning around the clock and we use a portable suction machine that needs to be taken everywhere with Noah. He also needs three different puffers, twice a day for his lung condition.
Noah has been admitted to hospital over fifty times, and many of these times have been for pneumonia and other chest infections.
Noah has severe and isn’t a candidate for surgery to correct it, because the doctors do not feel he could cope with such a big operation, and probably wouldn’t pull through it. The curve in his spine is now so severe that it is pressing on his internal organs, and compromising his lung function even more. The only option to treat his scoliosis has been to have a custom made body splint made for him by a company called ‘Second Skin’. The suit cost almost $4000 and we have had to rely on funding from charities to cover the cost of having a new one made every 12 months or so.
Noah has gone through massive growth spurts. This has also meant that the curve in his spine has increased very quickly as his body has not coped with the growth spurts well. which has meant he has had
Noah's body is very stiff and needs physio therapy and massage every single day to keep his limbs moving and to keep his muscles as loose as possible, so he can avoid getting contractures. This takes a lot of time and is done at home every day, after being taught by his physio what to do.
He also is in nappies full time and has neurogenic bladder which means he needs assistance to use his bowels and bladder including giving enemas, laxatives, bowel massage, and also doing bladder massage to get him to empty his bladder properly or he gets frequent urinary tract infections. Without the assistance of us doing a bladder massage, he is unable to urinate and has bladder spasms making it even harder for him to go.
He has intractable seizures (seizures that are difficult to control), and has had them since birth, and may possibly have Lennox Gastaut Syndrome. This has meant he has trialled many different medications to try to stop the seizures, as well as going to the Royal Children’s Hospital in Melbourne numerous times to try alternative treatments such as the ketogenic diet. Unfortunately he still has seizures and has probably only had five days in total in his whole life, when he hasn’t had a seizure. On average he is still having around five seizures per day, and on a bad day can have up to ten.
Noah also suffers from and has had three fractures in the past three years, just from slight knocks. He recently had his first treatment of bisphosphonate therapy to increase his bone density, and will be having this treatment every four months or so.
He is cortically visually impaired, which means that his eyes are okay, but his brain doesn’t register what his eyes are seeing. We therefore have to do a lot of vision work with him to assist him in tracking and seeing objects. He does this vison work at school as well as hydrotheraphy. He is lucky enough to be able to go to two different schools - part time at a special school and part time at a mainstream school. When he goes to his special school he catches the bus to school.
Noah communicates with us in his own way. We know when he is happy, upset, in pain or relaxed by the ‘baby’ sounds he makes and his body language and eyes. Even though we were told he wouldn’t recognise us or respond to us he knows his family and familiar people and will respond with a smile or a look when you talk to him, or touch him.
He is almost ten which means he has well exceeded the doctor’s expectations. We have been told numerous times that the reason that Noah has lived so long with his condition is because of the love and care that we give him. We are proactive in seeking treatments for him including alternative treatments such as a seeing a bioresonance therapist and chiropractor regularly.
He is currently having oxygen energy therapy on a weekly basis, which has greatly improved his alertness.
Life is definitely very hard at times and Noah has many trials in life, but we know how blessed we are to have Noah in our family and are so grateful for every single day that we have with him and love him so much. We know that one day we will have to say goodbye to him for a short time, and until then we hope to give him the best life possible.
We try not to count the days that we will have with Noah on this earth, but try to make each day count.We would love any comments about Noah’s story on our family blog which is http://lisajking.blogspot.com/2011/05/noahs-story-page.html
Posted by Mom2Boo_n_Cole at 8:05 PM