Dr. P is happy with Jason's progress. One hiccup was the urine test that was done yesterday showed that there was a high level of protein in the urine. This is a test that Prof. B requested. He is a kidney specialist and requested Jason's blood pressure to be monitored and urine tests to be done. His blood pressure was fine but the high protein in the urine is something to worry about and needs to be monitored and re-tested. They have started an antibiotic for this and he will be on that for 10 days. The Prof said that they will repeat the urine test. If it is still high we need to investigate why. This Prof is REALLY good, he knows everything and is so easy to talk to. I spoke to him about how far we are to going home. He advised that at this stage we need to continue with the feeds and get the feeding and the gut right before we rush out of here. He said that we need to have Jason on his pump at night and be able to bolus feed him during the day and be comfortable that he is tolerating his feeds, getting the nourishment and fluids that he requires. We cannot rush these things and have to take it really slow as his gut needs to heal. I totally agree with him and besides polygamy is due on Monday.
As far as the operation goes Jason needs to be circumcised as the skin is too tight and also a urethrotomy which is a dilation of the urethra. This has been a problem that we came across only when we did the ultrasound and found it by mistake but this has been going on before birth. I found notes in Jason's file that I had kept from the fetal specialist and this is something that should have been followed up after birth. I am not sure how this has affected him and in what way but I am sure it has been a huge problem. Imagine not being able to wee properly, basically having a constant bladder infection? Shame my poor nunu. Anyway this is something that needs to be resolved. Whether we do it this week, next week or in a month or two I am not sure and that will be up to the urologist.
Feed wise I spoke to the dietician today. She has done her calculations and in order for Jason to grow and sustain himself he needs 1500kj per day. In order to provide this with Neocate she has calculated that we will require 22 tins of Neocate a month!! One tin costs R450.00 therefore JUST his formula alone will cost approximately R10,000.00 per month which is scary considering we have been battling to fund his Nutrini Peptisorb which was half the amount. I haven't been able to work this past month due to being in hospital with Jason. Besides his milk we require pump sets every night which cost R1,800.00 per month then there is hanging bags which we have to change daily plus his therapies (speech and OT) which cost R1,900.00 per month, medication, medical aid and home schooling. I have NO idea how we are going to afford all of this and the only way is fund-raising and the help of everyone reading this. A friend of mine has started a monthly pledge commitment on Facebook where people pledge to a monthly contribution of R50, £4 or $6. It is not a lot of money but every bit adds up and will go towards Jason's nutritional costs. The funds can be paid into the trust's bank account which is on the page titled "Banking details" or you can pay via PayPal to [email protected]. Already people are making deposits into PayPal which is fantastic. Thank you SO much you are helping to buy Jason's Neocate. If you would like to make a commitment, please fill in the form on this blog just out of interests sake. It would be nice to know who is willing to help us.
Thanking you all for your support and most of all your PRAYERS. Prayer is powerful and God and his angels are watching over OUR little man and I can see the power of prayer working every day that he gets stronger. To have a sick child is not easy but I believe God is working wonders in our lives and wonders in Jason's road to recovery and eventually "Jason's journey to eat". This website started out to record Jason's road to eating well it has been a LONG LONG process but the end result WILL be Jason eating and when we see that day all of us will celebrate together.