Bruce and I saw the dietician today and she has given us the plan forward for the next couple of days. Tomorrow we increase the PEG feeds to 20mls per hour and reduce the TPN to 40mls per hour. Friday and Saturday we increase the PEG feeds by 20mls per day and decrease the TPN feeds by 20mls per day. If all goes well the TPN feeds will stop on Sunday and on Monday we will see if Jason can tolerate either oral feeds or bolus (PEG feeds without the pump). So eventually we will be where we were with Jason receiving 1500kj per day. That is the target.
We had a bit of a rough time today with physio and another drip infiltrating. With physio we had to suction twice (morning and afternoon) which is extremely traumatic for Jason and for everyone holding him down. Today with the re-siting of the drip he went hysterical which he doesn’t normally do. Everything has just become all too much for him being poked every day and held down for suctioning. Everything Jason goes through I go through with him and it’s difficult and extremely traumatic for both of us. I look forward to Sunday when the TPN feeds are stopped and no drip is needed. We have finished the 7 day course of antibiotic so that is good as well. Now just for this nose, post nasal drip and lungs to clear. It is getting better but I have never had a chest and sinus infection last this long before. Hopefully that will stop soon as well as we need to stop all these traumatic episodes.
Jason and I were spoilt rotten today. A friend of mine from far, far away (overseas) kindly arranged to have some Woolworths goodies and food delivered to me. I am extremely touched by this really kind doing, it really means a lot to me – no more hospital food YEAH. Tomorrow Jason and I plan to show his monkey how WE can eat a banana!! Another friend of mine came to visit us and brought Jason a whole bag of goodies and toys. He was so excited and hasn’t stopped playing with everything. I was also spoilt with some goodies but I am not going to tell what my special request was. The girls at work may have an idea :-)
Bruce and Nicole are doing well. Bruce is doing such a fantastic job with our darling daughter. She is a year old and VERY busy. She doesn’t stop until she eventually passes out so she is keeping daddy VERY busy and daddy is doing an amazing job with her seeing to her needs. Shame daddy is also trying to work and coming to see Jason and myself carting things back and forth that we need. Shame I can see he is tired but what an amazing husband I have. We are both extremely tired and have our hands full. At the end of this when we home we really need some time out. Maybe a day or two off for Bruce so we can spend some time together and just have some time out to relax as a family. That will be nice.
Anyhow it is late, this mommy is buggered and it’s time for bed. Thank you for all the messages, well wishes and prayers. I am reading them all and don’t get time to reply to everyone but just know that I appreciate everyone’s support. Please keep up the prayers for Jason. Prayer is powerful!!
Night night