Exhaustion and Frustration have officially set in!

Well...today has been VERy eventful for Braden and he is definately frustrated with this entire process. The morning began like all the rest, however our night was not as good. This was the first night that Braden did not respond well to the nurse that was assigned to us. His frustration and cooperation with all the different things he was asked to do led to meltdowns and I felt horrible because I know things could be sooooo much different if the right person interacts with Braden. Keeping with the schedule he has been having he awoke at 0330 in the morning and desired once again to watch cartoons...so that is what we did...thank goodness for nick jr and the disney channel. At about 530am his nurse came in and she made us aware that they needed to start ANOTHER IV because they wanted to get the IJ central line out. Of course he was not happy probably because it was 0530 in the morning and he was beginning to get tired, but we attempted anyway. So, 2 attempts later and alot of positive reinforcements we finally got a good working IV. So now we just had to wait for the Doctors to round to discuss the plan of care. Once the doctors rounded the decision was made that the foley catheter and Central line were going to be removed and Physical therapy was also going to work aggressively with Braden to help with his mobility. As well as Braden is able to advance his diet as tolerated. Also, we were going to be moved from PICU(Pediatric Intensive Care unit) to the stepdown unit. We just had to wait for a bed opening. Physical therapy came and worked with Braden massaging and stretching his legs to help release the muscles from the contracted state they are in. Even so, Braden is in so much pain when he stands and can only be on his tip toes to move around and that is even difficult so needless to say we will probably be continueing physical therapy even when we go home for some time. :( Throughout the day Braden did not have hardly any interest in eating and just sipped on some gatorade and hawaiian punch and had a couple of bites of chocolate ice cream. At about 500pm a bed finally came available and we prepared to be transferred. Before our transfer the doctors came in to remove the central line and this too was a struggle because it is actually stitched into Braden's neck and the stitches need to be cut to be removed and he was petrified that they were going to cut his neck..Poor baby :( I felt so helpless as did Ian because we are just ready to take our "punky" home and enjoyed what will be left of our summer. We finally succeeded in getting the line out and prepared to transfer Braden to the 5th floor stepdown unit. As we were leaving, Braden's surgeon Dr.Stanley came to see Braden and is estimating that we will be going home in about 3 days after Braden has an angiogram to look at all of his vasculature to make sure all is working well and there are no blockages or complications with the surgery. So the angiogram is scheduled for July 15th....So maybe just maybe we will be home on the 16th or 17th!!!! YEAH! So we were wheeled to the floor by our most favorite nurse "Jess" and got to our new room and got settled in. We were sad to say "bye" to jess as she was AMAZING with Braden and had so much patience and compassion for him and he really took to her. Once we were settled in, we were able to figure out what Braden was hungry for and he finally ate Pizza and chocolate milk. And said "MMMM that is soooo good!!!" After eating Braden was tucked into bed and fell fast asleep. So that is where we are at now....just seeing how he progresses and waiting until the 15th.

We thank you once again for all of the love, support and encouragement. We REALLY could not have made it without all of your kind words and prayers. We love you all!