This morning we had physio, his chest just isn’t clearing as nicely as we would like it to. The phlegm is loosening up but Jason isn’t coughing it up and out like he should so it is just sitting in his throat which isn’t good. This afternoon’s physio he wouldn’t cough for us at all so the physio and I decided it was necessary to suction his nose and the back of his throat. NOT nice to hold your child down while he screams and cries “daddy, daddy, daddy”. Awful but necessary to clear and we got some really thick secretions out that really helped him breath and clear the airways a bit. He is still very wheezy, I can hear while he is sleeping now.
I saw the dietician this morning as well and we had a chat about the plan forward. I must admit the plan did shock me. I knew they were starting peg feeds tomorrow but goodness I didn’t realize how slow they were going to start. They are going to VERY slowly wean Jason off the TPN (vein feeds) and onto peg (feeding tube feeds) into the tummy again. They are going to start the peg feeds via the pump continuously but set at 10mls an hour!! Yes 10mls an hour!! That’s like 2 teaspoons an hour! Shocker for me and made me think of Neonatal ICU days when Jason was a new-born prem baby weighing 1kg. I guess this is the same thing we have to make sure that he is tolerating the feeds into his tummy and they want to take it really slow. Like super slow. I understand and I get what they are doing and I agree with the plan but I guess it really shocked me and made me realize the seriousness of the situation. I know it is serious but reality just hit I guess. The reality of how sick my little man is and the reality that we are here for much longer. This is going to be a SLOW process. It’s good we are going slowly I know.
So mom had a bit of a wobbly and tough day processing all this. I was hoping that by the weekend we would be home but this isn’t going to happen. We are here for at least another week. Straight away my mind races and thinks about Jason, about Bruce, about Nicole, about home, about money, about the fact that we are stuck here for a long time living separate lives. Bruce and Nicole that side and Jason and I this side. It’s hard not to worry about finances when I am missing out on money every day that I don’t work. We raised that R8,000.00 at the Barnyard Fundraiser which was fantastic as that will cover a month’s supply of feeds, pump sets, syringes and therapy. But now my salary that would cover medical aid and help with our normal monthly expenses we don’t have. It’s crazy I put so much effort into the fundraiser and that money is going to help but now we are short anyway. As Bruce and my mom said there is nothing we can do about it. We cannot control what happens and we just need to stay focused and concentrate on getting Jason better.
I was reading a bit of my Joyce Meyer’s book today called “Never Give Up” and she was talking about stop worrying about the past. The past is in the past and focus on the now, focus on the future. It is true but it isn’t easy to forget what you have been though. The past does have a lot of negativity for us and worry for us – Jason not eating, Jason having terrible diarrhea, Jason gagging and vomiting and dehydrating until we have to get admitted eventually. It’s not easy to forget that but I need to focus on what lies ahead and stop worrying that this will happen in the future. I have the assistance of Jason’s paediatrician and dietician and they are working together and no matter what happens they are here to make the decisions and they are here to see what happens when we start feeds tomorrow. We are in the right place and we are getting the assistance and help that we need. Who knows what the future holds but we will take it one day at a time and not focus too much on the too far future. One day at a time!!!