Thursday 13 May Kyle update...Get ready for the BEST news ever!

Okay, a whole heck of a lot of really great news has happened today. First, at Kyle's weigh-in tonight he was all the way up to 11 lbs 12 oz!!! He is gaining like a weed suddenly. I was very concerned about what I thought was a distended belly this evening and when I asked the nurse to check it she told me it was what a baby's belly was supposed to look like. It's nice and soft and round. Funny, my little baby having a round tummy. His cheeks are suddenly plumped out also. I have a feeling my tiny newborn sized baby will not be a tiny newborn sized baby much longer.

You can see his plump little cheeks in this picture. He got dressed for the first time since surgery into his nice soft pajama's.

Another really great thing that happened today was he got his chest drainage tubes taken out! And the pacing wires that were attached to his heart were removed! I stayed and watched (I was given the choice but wanted to see) They gave him morphine to help with the pain then un-bandaged them. The tubes sticking out of his skin made him look eerily Borg-like. I tried a "resistance is futile" joke but apparently I wasn't working with Star Trek fans. I knew the pacing wires were connected to his heart so they would be long but I was not expecting how long the tubes actually were. For some reason I was under the impression they were only about 2 inches into his chest. The short one was about 6 inches long and the long one was 9-12 inches underneath his skin, into his chest cavity. No wonder he hated them so much!

He got bandaged up and is incredibly happy now. He is only on Ibuprofen and Tylenol for pain. He has been grinning and playing and kicking and happy and talking ever since. I actually had to make him take a nap this afternoon so he wouldn't wear himself out too much with his elation over being free. He only has three holes left, two IV ports (one on his right foot and the other on his left hand) and then the port in his jugular (I believe) that has a probe sitting on top of his heart. That one worries me the most, it started bleeding today after he had the tubes removed. They draw blood from it for labs which is why it is still in, so they don't have to poke him every day. Tomorrow morning after labs are done if everything continues to look good he will have it removed.

We keep his Charlie Brown up next to the right side of his neck to protect those wires from his hand. He knows they are there and will reach for them. This way he grabs Charlie instead and he doesn't need his hands mitted. I'm thinking though we have a serious Lovey in the making here. Kyle was showing off his new strength today by grabbing Charlie's leg and lifting him all the way up! While shaking him. Kyle has never had enough strength to pick anything heavier then the lightest weight rattle you can find and here he managed a stuffed doll almost as big as he is! I was massively impressed at his muscles.

Kyle has also been holding his hands up like this, playing with each hand. This is another new trick for him. He used to be able to grab his hands only if they were resting on his chest. To be able to lift them all the way up like this is showing off his new strength also!

This is Kyle's "Beads of Courage" necklace so far. He got a silver one today for getting his wound redressed. Each yellow one represents each night spent in the hospital. Their is a magenta colored one for his ambulance ride. The aqua colored ones are for each tube inserted and removed and the pale green ones (that look pearly in this picture) are for each x-ray or echo he receives. The three red beads are for the blood transfusions he received during surgery. When it is full I will count and tell each and how many. I love it. I'm a stickler to the nurses to make sure Kyle gets his beads. I kept thinking upstairs that I needed a gold star sticker chart for every time I did something like insert his NG tube or set up his feeding or reconnect him to the monitors and this fulfills that.

Okay, now for the best news ever... WE ARE GOING HOME ON SATURDAY!!!!!!!!!!!!!!!!! Tomorrow they want to finish taking out his tubes and watch him to make sure he continues to gain weight then Saturday we are home! Worse case scenario was a two week stay after the surgery and I am happy happy HAPPY that he decided to be more then the best case scenario at 5 days! He truly has been blessed and watched over.

Today when Dr. Pearl (his surgeon) came in to check him before his tubes were removed I took the opportunity to tell him "Thank you". He looked a little flustered and said "you are very welcome, but its just my job" and I told him it wasn't just his job, that he saved my baby and there aren't very many people out there that could have done that and I would always be more then grateful to him. I got the impression that he wasn't thanked very often and he tried to hide the fact that he teared up a little by quickly excusing himself.

Yet again, Kyle's insurance has not gone through. The financial advisor who is helping us here finally got in touch with the DES contact over at Banner Desert who told her she was just getting ready to deny us!!!! All because she didn't walk over to her fax machine to see the 200 pages of documentation that we had sent her. She then gave a lame excuse that there was a discrepancy with our social security numbers and she needed to see copies of our cards. Luckily Kevin was able to get home to fax them over because she had to have it by the end of business day today. This has to go through before we are discharged otherwise it will be an even bigger nightmare for me. I'm sure you are already but please, could you double your prayers regarding this for Kyle and for my Sanity's sake?