Jason is looking and sounding much better today. Starting to talk a lot and wanting to get out of bed and out the isolation room. A good sign that he is getting better :-). Dr. P came to see us but of course when he came Jason decided to have a gag attack and had all the nurses and Dr. P trying to figure out which kid was being choked by the physio. The physio was on lunch and hearing the commotion came out of the room to everyone's horror now knowing that someone was choking all on their own. Jason has these gag attacks and I think this one was out of pure excitement of seeing granny and grandpa and receiving his carry bag of presents. It is a sensory thing and he does tend to gag when excited as well. So bad timing on Jason's behalf making the paed believe that he isn't getting better.
The results came through for the urine test. From 3.68 the protein level has dropped to 2.48. Prof B came to see us this afternoon. He said the good news is the levels have dropped but the bad news is we don't know if the elevated levels are because of the infection or because of the kidney disease. He said this infection Jason has is a nasty sticky infection that is very difficult to get rid of in normal circumstances. In Jason's case he is immunodeficient and his gut issues make it that much more difficult to get rid of. Because he is malabsorbing and has chronic diarrhea his body more than likely wasn't absorbing the oral antibiotics properly. Initially the fevers were there which fight the infection and the antibiotics seemed to help the fevers but didn't actually kill the infection. So although we thought he was getting better he actually wasn't. Jason was presenting with a swollen face which indicated fluid retention and the excess weeing is the body's way of getting rid of that infection and excess fluid. We are going through about 10 nappies a day. He also advised that I need to check whether Jason was vaccinated for Infanrex Hexa which would protect him from these haemophilus influenza infections. He thinks this vaccine only came into the country at a much later stage and Jason may have missed this. So this is something we must look into.
So the bad news is we will be here a few more days. We need to get rid of the infection and repeat the urine test in a few days. Both doctors want us to continue with the nebulizing and physio and we will need 5 to 7 days of IV antibiotics. Wednesday will be 5 full days of IV antibiotics so it seems like the soonest we will go home is Wednesday.
Not a great situation to be in but what can we do. We have to do whatever is best for Jason. A few more days away from Bruce and my little Nicole. Not easy being away from them. A few more days off work too which means loss of income as well. I am going to have to work really hard when I get back as I have a tax deadline at the end of November. BUT family comes first and these things always have a way of sorting themselves out. My faith keeps me strong. It's not easy dealing with all these obstacles thrown our way but I know God is with us every step of the way. We have been through a lot with Jason but most importantly Jason has been through a lot. His little body gets hit with one thing after the other. Being immunodeficient, having malabsorption and gut issues and now chronic kidney disease isn't good. BUT we just have to keep the faith, continue to pray and BELIEVE for that miracle. Our little boy WILL be healthy one day. Please when you say your prayers say a little prayer for Jason's healing as well. I believe if we all unite in prayer this will help stir the pot up in heaven :-). BUT everything in God's time not ours!