He is still very chesty and having physio. We did have to suction this morning
which wasn’t nice for him and traumatic but we did get out a lot of thick mucus
out. This is the only way we are able to clear him as he is not coughing strong
enough to bring it up. The physio said that he was very crackly this morning but
a bit better by this afternoon.
I spoke to the dietitian and Dr. P and the plan is to proceed forward with the
Nutrini Peptisorb and see how he tolerates it. Another drip needed to be done
again. It seems to be a drip a day now. His little veins just can’t handle. My poor baby has bruises, scars and pin prick holes all over his arms and hands.
It’s terrible to see but what can we do, he needs his drip and needed the TPN
feeds. We just have to pray that soon he won’t need any of that and he has a
complete turnaround.
We changed Jason’s mic-key feeding tube today. The rep from the supplier came and measured the size properly and Jason’s size has been changed to a smaller size due to his weight loss. I was finding that stomach contents were leaking out the stoma hole causing redness and irritation and with it being too loose you can get granuloma. So now he at least has a mic-key that fits nice and snug.
Shame its Bruce’s birthday tomorrow. I feel awful that he doesn’t get to spend time with his son and with me on his birthday but unfortunately this is out of our control. I haven’t even gotten him a birthday present. We have spent so many different holidays and special occasions in hospital it’s quite sad. Last June we spent Jason’s birthday in hospital for polygam and this will be dad’s first birthday without his family around. Shame he did say that he and Nicole will have a weber chicken together lol.
Jason and I received a lovely surprise this afternoon. A friend overseas (the master mind behind this whole plan) kindly got a whole lot of school friends together from my old school and they all put money together and brought Jason and myself presents. We were thoroughly spoilt and what a surprise. These girls I haven’t seen since 1995 and it was just so special that they thought about Jason and myself sitting in hospital and decided we needed some spoiling. I received a bunch of flowers and a whole goodie bag of Woollies toiletries and smellies, chocolate and a voucher and Jason well Jason, he received an iPad and a cover for his iPad. I am definitely going to be having a bubble bath tomorrow with my bubble bath and shower gel. Better get in there before everyone is up as there is no lock on the door and I am going to have a nice soak J When Jason opened his pressie I just couldn’t hold back the tears. We have never had an iPad and I have NO idea how it works and what it can do but from what I have heard is that it is amazing. I will have to learn what applications I can download for Jason and this is going to be a HUGE part of his education and learning. Jason is a gadget boy, very good on the computer and he is going to LOVE his iPad. So spoilt but this isn’t going to be a toy, he is going to actually learn while he “plays”. Thanks guys you all know who you are. Thank you just doesn’t seem enough but just know that all of you have made a HUGE impact into Jason’s learning.
I can’t believe we have been here 13 days today plus the 5 days before. Been a VERY long time away from home, my hubby and my darling daughter. I miss them SO SO much but hopefully not long and Jason will be healthy again and we can go home and be re-united. I am just not going to rush out of here until I am confident that Jason is receiving enough nutrition so we don’t end up back here. We have to make sure that his feeds are agreeing with him and we are taking it one day at a time. I also have a lot of unanswered questions about the future that I need to get direction with and I am not leaving here until we have that.
Well this mommy is tired. I can never get to bed early enough in hospital. I don’t know what it is but I think it’s because my mind is racing with so many worries, so many questions. I do know that these will be answered in time and we will eventually get the help that we need for our little man. I have complete faith in that!