~ PRAYERS ARE NEEDED ~

Sorry I haven't been able to update the blog lately. Things have been kinda crazy and by the time we get to Ronald McDonald house we are exhausted. We are hanging in there and trying to stay positive.


Yesterday 10-27-2010 - Jordan was the ROCKSTAR of the CICU... All of the nurses and doctors were shocked at his improvement. They extubated him around 5:30am and removed some of his heart lines. Around 11 am they removed the sheath that was in his groin and started weaning him off some of his medicines. At 2pm I was able to feed him with a bottle and he drank it like a little pig. He did so good for a couple of hours then his breathing became labored. I kept telling the nurse something is not right. I held and cuddled him the way I did at home and it still didn't help. He was fussy and didn't act like himself. They make us leave around 6:45pm for shift change so we left to go get some clothes. As prepared as I always am...we were not prepared for this. We had the clothes on our body and the clothes we wore Sunday so we were not prepared at all! Once we were able to get to see him that evening he still didn't act like himself. When I fed him his 12am bottle he didn't want it so they had to put his feeding tube back in. We stayed with him until 1am and I knew something wasn't right.


10-28-2010

When I called this morning to check on him at 6am the nurse said he was "OK." He hadn't had a good night and his sat's were still all over the place. His normal sat level should be between 85 and 75 but Jordan's is now 75 and below. When we got to see him this morning he didn't look like himself. The nurse talked with us and told us he wasn't doing as good as they had hoped. Yesterday they had told us we would go to the step down today and be home by the weekend. They had changed his medicines in hopes that it would help him breath a little better. They had increased his oxygen to 8 liters of high flow and his sat levels were still dropping. We sat there and watched them dip into the 40s and then go back up. The doctors were ordering blood gases and xrays but all of his gases were good. The xray looked better than the morning xray. They had told us his lungs were "wet" and they had fluid in them. They had given him meds to take some of the fluid off of his lungs. His sat levels were still dropping and they have decided to intubate him again. They say he maybe tired and it's just to hard for him to breath on his own.


This has got to be the hardest thing I have ever faced. I finally see my dreams coming true that I get the little boy that I have always wanted. Then I find out he has a heart defect that can never be fixed. He has his first open heart surgery and does awesome. We get to take him home for a week and see your dreams coming true again. We did everything we knew to do to make sure his life is comfortable and then the bomb drops once again. The unexpected happens...another open heart surgery! Then they tell you he is doing great and the bottom drops out again. What do you do? Is it fair to him? You question yourself over and over! I know God has a purpose for him and for us but I don't want him to suffer! Jordan is precious and did nothing to deserve this. I would prefer this happen to me not him. He needs every ones prayers and we need your prayers too. I feel my heart sinking slowly and I am trying so hard to be strong. It's so hard because we've had him home and were able to protect him from all the surgeries and needles.

Thanks everyone for all the prayers, text, and phone calls!