They battled to find a vein which normally is easy with Jason. Because of being dehydrated, it isn’t so easy to find a vein. The blood results came back in the afternoon and revealed that his lymphocyte levels were low which meant that he had a bacterial infection and obviously he was dehydrated. Antibiotics were started for the infection and he was given meds via the drip for the vomiting. It’s amazing how as soon as a little fluid is in his body how much better he looked after a few minutes. Quite scary actually and that was only a few hours of vomiting! Well J reacted well to the antibiotics and fluids. The first day we did not give him any milk or food that day or overnight. By day 2 in the afternoon he was looking great, jumping on and off his bed, walking around with his drip stand and looking so good. I started oral feeds at 2pm and about 5 minutes later bang man down again. His temperature shot up again, heart racing, sweating, red blotchy skin, blood red ears, pale, gagging and the diarrhoea started too. He recovered and silly me (being a mom desperate to feed her child) I gave him a 5pm oral feed. Again same thing happened and he was SO SO sick. So as soon as food hit his tummy he was violently ill.
The rest of the day went smoothly, the paed was happy to let us go as long as fluids and food stayed in, temps were down and he was not dehydrated. He had 3 doses of iv antibiotics for his other bacterial infection so he was happy with that. After his 3rd dose his drip infiltrated (came out the vein and fluid starts going in the tissue) so the drip had to come out anyway. Thank goodness it was after the antibiotics! Anyway he started taking water orally and then food (pureed fruit) and then milk. So his food was staying in, his temps were down and he had enough fluid to be discharged. I was not going to stay another night and have to poke him again for a drip if not needed!! The paed was happy to allow us to go home with oral antibiotics. From then feeding improved and we are back to normal with 3 hourly feeds, water in between and overnight tube feeds.
What a LONG tough week it was. Gosh these infections set Jason back, he loses HUGES amounts of weight, and he loses out on therapy and school and just can’t be a “normal” child. I don’t see this tube coming out in a LONG time. This website is called “Jason’s Journey” which started out as Jason’s journey to eat but it has become so much more than that. It is “Jason’s journey to health and eating”. What started out as a fundraising trip to Graz to get Jason to eat became SO much more than that. I am so grateful to everyone that helped us get to Graz and so grateful to the Graz team. Had we not been able to go to Graz we would never be where we are today with Jason’s eating and drinking and also finding out that he is immunodeficient. I look at him today and I watch him drinking his own water with his sippy cup and I am SO SO proud of him and SO SO grateful for the opportunity for us to go to Graz. Not all of us can say we went to the other side of the world with the help and support and donations. It’s extremely humbling!
Just the day to day costs for feeding our children is a huge struggle for us parents of tube fed children. Our trust has run dry and so has friends of ours. It’s a terrible situation to be in when you cannot afford to give your child the best medical care and treatment that they need. These things cost. The feeding tubes, the extension sets, the night tubes, the special medicated formulas, the extra nutritional powders and vitamins that these kids need is crazy costly. Not only that, these children need speech therapy, occupational therapy, a dietitian and pediatritian and with a feeding tube they are prone to catching infections and spend PLENTY time in hospital and on medication. Medical aids run dry and the medical aids don’t see these children as children with a chronic problem because they don’t fall on the list of their chronic conditions! Yes you can claim your expenses back from tax but you have to have the money before hand in order to cover the costs and the costs that were paid out of a trust you cannot claim back from the tax man!