Anyway I wanted some action today after last nights pooing, how can one little body poo so much with nothing in it? The TPN drip infiltrated during the night again so his whole arm was puffy with fluid this morning. This upset me and when the nurses came back to say they are going to re-drip I said to them no they are not, not until I have spoken to Dr. P, spent some time with him and the dietitian. I needed answers after 6 days in hospital I have been battling to see progress forward with my little man.
So anyway this morning I saw Dr. P and the dietician together which was good. They were able to plan together the way forward. They have decided that they want to continue with the TPN feeds until about Thursday and slowly start introducing PEG feeds. Wean him off the TPN by reducing the rate of the pump and slowly increase the rate of the peg feeds. I agree with this and think it is a good plan forward. They have repeated Jason's bloods so are keeping a close eye on his protein and electrolyte levels. Even with the TPN and the drip his protein was low and his electrolyte levels were low. Not surprising the amount of poos he had last night!
I did manage to get my long chat with Dr. P about all my concerns. It was good that my mom was here with me as well and he was able to explain things to me and my mom and my mom could also ask some questions as well. He advised that the pooing is more than likely as a result of a combination of the Klacid medication which is treating the sinus and nasal congestion, post nasal drip and bronchitus as well as the amount of mucous that Jason is swallowing which is aggravating his gut causing him to poo more. I guess this makes sense. So he has stopped the Klacid and added immodium to slow the gut. I still question this as to me last nights pooing was ridiculous and today we only started the TPN feeds late this afternoon so he went without feeds the whole day and we had NO poos. I guess time will tell as now we have started the feeds again and we will be able to keep an eye on this. We have also started polygamy tonight so hopefully that will help boost his immune system.
As far as a way forward with Jason and where we are going as far as treatment and a diagnosis. We could go to Chief Albert Luthuli Hospital or Red Cross Children's hospital but as he says are they going to be able to help Jason, are the right doctors there to see Jason? Jason has complicated history and complicated problems and we will need to spend weeks in hospital in order for them to review his case and do the necessary tests. The technology here for testing isn't the greatest but we don't have the finances to just fly overseas and get a quick fix and do the necessary tests. I have more questions than answers right now. My mind is racing with what to do, how to do it, how are we going to afford it, who do we see etc. Dr. P is also concerned about school for Jason, he is concerned about the risks involved with him going back to school and the bugs and viruses he will pick up there. As he says he sees "normal healthy" kids coming in for all sorts of admissions and with Jason being immunodeficient and prone to catching everything it's not good having him with so many kids. BUT what can you do. This is something Bruce and I need to discuss and decide on. We have lots of decisions that need to be made in the future but I am relying on God's guidance and God's protection. I know that God will open the doors that need to be opened and close the doors that need to be closed. I don't know when I can return back to work but God has also always provided for us. For now Jason is my main priority and we need to get him healthy and strong. What that will take, I don't know but as I said I am relying on God's guidance and I believe the right people will cross our path, finances will be provided for, progress will be made. This is a LONG slow process but a necessary one and one that I am prepared to wait here in hospital for. We are in good hands and this is a positive step for the paed and dietitian to help with reviewing what is going on with Jason.
Otherwise Jason is looking really good today. He is comfortable, he is happy and I am starting to see the old Jtjie. Every day gets better. We need this chest to clear but we are doing all the necessary things for that to happen. Nebbing and physio is helping. Today my mom came to visit and the girls from work. Jason loved all the attention he was getting and all the presents. Even mommies presents he thought was his. It was AWESOME to see him look at my chocolate Ferrero rocher and put it to his lips and have a taste. A good sign indeed!!!