Last Monday we were back at the doctor. The bronchitis didn't clear properly with the antibiotic and he was having fevers again, upper respiratory problems, thick green mucous that wouldn't clear and coughing. Jason's usual paed was away so we went to our GP that knows him pretty well. He said his chest sounded ok but he wasn't happy about the cough and mucous which was all upper respiratory. He wanted us to start physio and take a sputum sample to send off for testing to make sure he doesn't have anything out of the ordinary. We did physio Tuesday and Wednesday morning which did help lift the secretions. On Tuesday we suctioned and sent the sputum off for testing. The physio who has been Jason's physio for a good few years was concerned by his appearance. She said his chest was very noisy and she thought we were headed for a hospital admission. On Wednesday he sounded much better. Physio really does help!! On Thursday I received a call from the GP to say that Jason's sputum test came back positive. The pathology results were emailed to me and he has a "beta-lactamase negative Haemophilus influenza infection". Quite a mouthful if you ask me.
Thanks to Google I have read the symptoms. Basically the symptoms start as an upper respiratory tract infection (which is what he had 4 weeks ago whilst in hospital for octagam when we started him on antibiotics). The upper respiratory tract infection then progresses to a lower respiratory tract infection in a few days with features resembling a wheezy bronchitis. Sputum is creamy/green in colour. The cough may persist for weeks without appropriate treatment. What concerns me is it goes further to say that this strain of H Influenza is able to modify its penicillin-binding proteins, so it has gained resistance to the penicillin family of antibiotics. In severe cases an IV antibiotic may be required.
Jason has had all the symptoms and he finished his second dose of antibiotic this morning. This morning he woke up coughing and gagging with a fever. So despite two antibiotics he hasn't come right yet. I did speak to his paed on Friday so he is aware of it. I will have to keep an eye on him and if he doesn't come right I will take him back to the paed.
He is managing his Neocate feeds but he just isn't gaining weight. He was 15.6kgs yesterday so has lost quite a bit of weight. He has had bad diarrhea still with a raw rash. Jason normally has chronic diarrhea and obviously the antibiotics won't help either. He is on a probiotic but it's almost as if as usual his body isn't tolerating any feeds. I have tried blended soups, tried future life porridge on Saturday and yesterday a yoghurt. Still these go straight through him. I am trying to experiment with other blends as I know the Neocate isn't enough for him as it's a baby formula. He can't tolerate all the fatty additions like oils, creams, duocal powder etc. I am working with his dietitians and getting advice from other parents that blend food for their tube fed kids. At the end of the day I have to try what's best for Jason. It's all through trial and error and seeing his reaction.
His complexion isn't looking good at all. He has dark rings under his eyes, his skin is very pale, mottled and see through. You can see his veins through his pale skin. His nose and ears go red at times. His eyes are bloodshot. His tummy is definitely a problem as well as he is having the cramps and peristalsis movements and complains "tummy sore". He is definitely having cramps and spasms. His lips are dry, dry, dry despite giving him PLENTY water and rehydrate. We are putting Vaseline and lip ice on. BUT it does concern me that he looks dehydrated.
What more can I do than I am doing? Nothing besides going back to the doctor for the third time. I hate to say it but sometimes an admission is the answer. IV fluids and iv antibiotics help but at the same time an admission comes with it's risks as well plus I have a family to think of and a job to do with a deadline looming.
This is how Jason is. He is up and down. He has been like this for years. Some days he is absolutely fine and can go to school no problem then all of a sudden he is man down and really sick. Tomorrow he may be feeling better. With Jason we just take it hour by hour and react as we need to react. Tomorrow he could be back at school OR we could be admitted. Who knows, this is Jason. This is what happens when you have an immunodeficient child that doesn't tolerate foods and formulas. Two very important things - your immune system and nutrition! Not having these two very important things causes HUGE problems. His little body takes huge knocks because it doesn't have an immune system to fight infections plus his body doesn't get the nutrition, nourishment and fluids that it needs to function properly.
Through our journey I have met MANY special parents and children that go through daily battles just like us. Us parents are support to one another as we KNOW what it's like to struggle daily with our little ones. I have many friends that have kiddies with feeding tubes just like Jason. Before our journey to Austria I felt totally alone. My husband's Aunt sent us a dvd they had copied in the UK about a little girl named Tia who did not eat. She too had a feeding tube and her family went to No Tube for tube weaning and from there, from that DVD I decided then and there that this is what I was going to do for Jason, what I was going to do for my family. Through months of preparations and raising R200,000 we managed to go to Austria for Jason's in hospital treatment. You all know how tough our experience was but what I am getting at is this is where Jason's journey began. A dream to have a tube free child. A dream to have a "normal" child as most of us call it. This is how it all began and from our experience I have met many, many families that are going through or have gone through similar circumstances. I have made many wonderful friends. Watched them struggle with their own personal experiences. Right here in South Africa there are many kids with feeding tubes. Some have had their tubes removed (Matthew, Joshua, Tayden and Gemma). Some through hearing about our journey heard about No Tube and too went to Austria and are now tube free. Through my website I am in contact with many SA families and read and hear about their daily struggles with their tube dependent children (Riley, Adam, Imre, Sune, Jesse, Tayla Grace, Pierre, Hayden, Ayden) as well as children who are battling with feeding issues and weight gain (Kaiden and Jaimee). I have also met many families from around the world that have helped us through our journey, through their own experiences. We have had the pleasure of going to No Tube and met the most wonderful team of experts that not only helped us with Jason but diagnosed him as having primary immunodeficiency disease, took the time and effort in trying to assist us with diagnosing Jason. I have also been in contact with many families that have special needs children, some with rare diseases that too struggle with their daily lives. This is why I continue with my website. This is why my life is an open book. I am not afraid to blog and facebook about our daily life. If our journey and our experiences can help one or two people I am more than happy. Not only that, through my website and facebook page I get such amazing support and help from friends and complete strangers. A lot of the time those strangers becoming my friends. Our little man has touched lives, our little man has helped families and other little kids overcome their feeding difficulties. Our little man is waiting for his big break. One day he will be healthy and tube free. I know it!! Our little man is destined to do great things. Watch this space!!!