11-05-2010

WE ARE IN THE STEP DOWN ONCE AGAIN - one step closer to home! Jordan has done amazing since he got extubated Tuesday. We are so excited about his progress and ready to get him home so we can spoil him!

The last time I posted was Tuesday when he got extubated. I got to hold him several times that day but he mostly rested to recover from being extubated. Tuesday and Wednesday were both quiet days. Wednesday he slept most of the day. They removed some of his other tubes and started weaning him off the oxygen.

Thursday was a nightmare! When I got there to see him that morning he had a rubber band around his head. I was very confused...I asked the nurse why they had a rubber band around my son's head. He explained to me that Jordan needed a blood transfusion. In order for them to give him the transfusion he needed an IV. Jordan had kicked the one out of his foot that morning and they had taken his central line out earlier that morning. So they were trying to see if he had a vein in his head they could use to get an IV. They stuck him around ten times in his head and shaved both sides of his head. It was breaking my heart and I wanted to scream "that is enough." But I remained calm and tried to remind myself he needed the transfusion. After about 2 hours, 6 people later and 30 more sticks all over his body they decided they couldn't get a vein. It had gotten to the point I had to walk out and just cry outside by myself. I couldn't take watching them hurt my child over and over again. He had already been through so much and it wasn't fair for them to continue to hurt him. Once I got back they told me they weren't going to stick him anymore they would just put in another central line. I was much more accepting of that solution than them continuing to stick him. But the worse part of the day is once the surgeon came by he said Jordan didn't need a transfusion. I was very upset! I couldn't believe they had put him through so much pain for something that wasn't necessary. We talked with several doctors and explained to them my concern and how upset I was for the way things happened throughout the day. The doctors understood our concerns and helped make things somewhat better. I couldn't make myself leave him that night. I needed to comfort him and make sure he knew mama would make things better. Other than him looking like a pin cushion he had a very good day. He had pulled his feeding tube out that morning and took the bottle like a champ. He didn't need the oxygen so they removed it also. It was such a good feeling to finally look at him with no tubes on his face. He would just open his eyes and stare at me. I constantly question myself if he is thinking "I love my mama so much" or "why in the world are you putting me through all of this mama." It breaks my heart to see him go through more pain than I have ever endured and probably ever will go through. But I couldn't imagine my life without him. He is an amazing little guy.

This morning when I got to see him he was all clean and smelled like "pink" lotion (mama's favorite). He was in a big boy crib and just looking around. He looked like himself - They told us they were waiting on a room and he was ready to go to the floor. We were hoping that was the news we would hear but we didn't want to get our hopes up. We are so excited that we would be able to stay with him overnight and take care of him. He is such an amazing little guy!
Thanks everyone for the prayers and support! Our God is an awesome God - We've seen so many miracles in the last month.