The Prof popped in to see how Jason was managing on the new medications which were started this morning. The one is for the protein in his urine and the other is for nausea, gagging and stomach motility. He is happy that Jason's blood pressure is fine on the new medication but would like to continue to keep an eye on him and would also like to repeat the urine test on Tuesday. This will give the medication some time to work and we can see if it is making a difference.
Jason was a lot better today. He handled his bolus feeds much better without any reactions as in nausea and gagging. The tummy was a lot better but this afternoon very watery. So I am glad we are still here being monitored. Jason is on immodium to help twice a day and even with the immodium his tummy is a problem. The Prof has emailed his contacts overseas and as soon as he receives an answer he will let us know.
I asked him about the Neocate formula and told him realistically we cannot afford R10,000.00 per month, no-one can. He did say that he understands this but what they are trying to do is use the Neocate to give Jason's gut a complete rest. He wants Jason's stomach to heal and hopefully the cilia will function properly as well. So in order to do this he would like us to continue with the Neocate. It does make sense and the dietician is trying to see whether she can get a reduced price for us so holding thumbs.
Our medical aid have declined our application for PMB (Prescribed Minimum Benefits). I haven't received the letter yet but our paediatrician has receive it and I should get a copy tomorrow. I cannot understand why they would be allowed to decline it. There are 270 diagnoses and 27 chronic conditions that fall under PMB. These conditions are life-threatening emergency medical conditions and in terms of the Medical Schemes Act all medical schemes have to cover the costs related to the diagnosis. Jason does have conditions that fall under PMB so this is something I am not going to just ignore. They have declined everything including medication, formula, pump sets and therapies. I am going to take this further with the help of a few people that know what they are talking about. I think medical aids are quick to decline of course and if you don't query it you get nowhere. For the amount of problems Jason has they can't tell me that they will not help us with anything. So I have a fight on my hands and I will not give up.
Otherwise Jason is looking a lot better. He is still having physio for his chest and nebbing 6 hourly. We have really battled to clear the chest as he has been having physio and nebbing for 3 weeks now. His nose is always a problem. The CT scan was clear but we have changed nasal sprays to see if this makes a difference. The diarrhea and the gagging continue to be a problem but this is something that both Dr. P and the Professor are looking into. Hopefully we can get some direction soon. The test for Cystic Fibrosis was sent off but this takes 6 to 8 weeks. This was the DNA test that was done.
Hopefully a few more days and we will be out of here. As the Prof said to me today he doesn't want us leaving only to have to come back because the problems persist. He is right and he is definitely on the case and while we are here we are getting all the attention and care that we need. Hopefully on Tuesday we will get the urine test result and hopefully we can go home if all goes well. I miss Bruce and Nicole terribly. It's so hard basically seeing them in the hospital corridor for a few mins. We need our family together again, a month apart is way too long.
I continue to have faith that God is watching over Jason and God knows what is going on. We have prayed many times for healing and intervention. I believe we are getting the intervention and the right doctors now. All we need now is for the healing to take place and I do believe that is happening!! In God's time, not ours!!