Of course being me for those of you that know me well. I got onto my cell this morning and typed a lovely email to the Prof. He had emailed me to let me know that his overseas contacts were working on the gastro side of things and translating the German document for us and he just wanted to let me know. SO I thought I would let him know a few things of my own he he. I couldn't help myself out of sheer frustration of sitting here for so long and having fevers like that last night I sent him a reply with my thoughts on Jason and gave him something to think about. Well he obviously thought long and hard about it because a few minutes later I received a reply and 2 hours later he was here with Dr. P.
Of course when the Prof and Dr. P arrive there is Jason happily playing on his iPad when an hour before he was passed out with fevers of 38.8. So typical that they see him happy and playing when I have been stressing all last night and this morning. They must think I way over react! This time I KNOW that I am not over reacting. There is something wrong with Jason and they can't find it! So we had a long consultation, Bruce, myself, Prof B and Dr. P and goodness Jason is confusing the shit out of them. Every blood test, every urine test and every stool test comes back with NO clues, nothing, nada. On paper Jason is perfectly fine, some of his levels are a little elevated but nothing to show that he is sick and has a bacterial infection. After much deliberation it was decided that they think that Jason has a viral infection because if it was bacterial his CRP levels would be high and they are not. He also wouldn't be playing the way he was when they were there.
Personally my gut says the problem lies with the kidneys and the problem with the urinating and the urethra needing to be dilated but BOTH of them keep brushing me off saying that if that was the case this would show up in his urine test and nothing is showing there. I don't know I still feel that this is the problem but I am not a doctor am I.
Anyway at the end of the day after our consultation it was decided that we must "wait and see". We have to wait and see what happens. What more can we do but wait and see what symptoms persist and try and figure out what is causing those symptoms. So that is the plan. We wait. I am not too fazed about that because I wasn't going anywhere anyway with fevers like that!!
The rest of the day Jason was fine, his temperatures settled nicely, he was happy playing on his iPad and my computer, blowing bubbles etc. Then around 5pm came, Jason and I went and bathed, he came out shivering (after a hot bath). The nurses said to me he was cold which I didn't think so but thought maybe I am wrong so I put some track pants on him. His drip infiltrated and Dr. P was here so Dr. P re-sited the drip and took more bloods. While he was doing the drip they all kept telling me that he was cold and I told them that he wasn't. I know Jason he NEVER gets cold! So I went and got my thermometer and trues Bob he had a temperature of 38.4. Ha so mommy was right!! Always trust your motherly instincts. Us moms know best and we know our children! Anyway Dr. P left thinking Jason was cold and tonight we are sitting with really high fevers AGAIN. We battled to settle the fever from 39.7 we had given Perfalgan via the iv line and still 20 minutes later his temp was up to 40.2 so we gave Calpol. Eventually after what seemed like forever his temp finally came down. He is now sleeping peacefully with the fan blowing full ball on him. Poor nunu!!
So yes we continue our adventure - these are the "Days of our Lives". Never a dull moment in the Long household. Tomorrow is another day and we will see what tomorrow brings. I know I am not crazy, I know there is something missing and one day (hopefully soon) we will find the answers. Dr P and Prof B will not rest until they have an answer for me. They are both brilliant doctors and I have complete faith in them. I actually feel sorry for them. They are totally scratching their heads trying to figure this one out. Master Jason Long is giving them sleepless nights and a whole lot to think about.
Otherwise the feeds are going well. He seems to be tolerating the Neocate nicely. No hectic poos today and no gagging. I forgot to tell you yesterday that he has gained 500 grams :-). I said to the dietitian of course he has and that is because he stopped pooing. His body was actually absorbing the food instead of pooing it straight out.
I continue to fight medical aid. All x-rays and some blood tests were paid for out of our medical savings account. Over R10,000 worth of savings and all because they say hospital case manager hasn't updated the system whereas they have. So I have been dealing with medical aid and medical case manager as well just to add to my boring day here in hospital.
Please don't forget for those of you that are willing or able to help. We really need help with fundraising to assist with Jason's monthly medical expenses. Medical aid have declined our request and we are on our own until I win that fight. If anyone is able to assist with arranging a Golf Day in your province in aid of raising funds for Jason or maybe if you have a Barnyard Theatre near you and could arrange a Barnyard evening. We have already done one in Durban and it was great fun and well supported. Otherwise if anyone has a nice prize to donate to enable us to raffle a prize where people can sell raffle tickets please let me know. In the next day or two I will add a page of Jason's monthly requirements to give people and idea of his monthly needs and costs involved. All funds that are raised and paid to us are paid into Jason's trust account and when I need funds I have to email our attorneys a statement or invoice and they either pay or refund us. It is all 100% documented and legal and we do not use any funds for personal expenses. All the funds that have been paid into the PayPal account have also been paid over to the Trust account.
Of course PRAYER is a HUGE request as well. I really and truly believe that Jason is being uplifted in prayer through everyone that is praying for him and his recovery. With all of us uniting together in prayer answers will be found and we will find the reason behind all of Jason's difficulties. So please if you are in a prayer group or a church please add Jason to your prayer list. And of course Bruce, myself and Nicole. We are very tired and just want to go home now BUT we want to go home with answers and solutions!!