Monday, October 22nd - Six days and NOT counting

Good Morning. Well it was quite a roller coaster weekend for everyone here. On Thursday night, Steve had a conversation with Alex about journeys. He told him how some journeys can be scary but when Steve goes on a journey he always has his family with him. He then told Alex, "You won't have to fight the bump forever." To which Alex responded, "I know". Can you say "Wow"?!?! What a mind blower that is, huh?

Okay so let's go to Friday night. Here's the bedtime dialogue as best as I can remember:

A - "Mom, I'm scared to go to sleep."
G - "Why baby?"
A-"Because, I'm afraid that bad dream will come back."
G-"Well you know bad dreams rarely come back. Can you tell me about your bad dream?"
A-long hesitation
A-"Well, I was in the hospital and there was a can with a string. I pulled the string and out came a bunch of cigarettes and I was really scared."
G- pause "Oh baby, I'm sorry you were scared, but I'm confused. What about cigarettes coming out of a can scared you?"
A-"There was a button and I pushed it and I was dead."
G-(no idea what I said, but I tried to comfort him)
G-"Alex, what did it mean to be dead?"
A- long hesitation
A-"I was in the ER and I got pokes and shots and I was really scared."
G-"you mean just like the last time you went to the ER?" (Last ER visit was after he stopped breathing after the morphine and had to be revived by paramedics and then we went to the ER in an ambulance. He was put on an IV and stayed for several days, which was last hospital visit."
A-"yes".
G-"Well, Alex your dad and I are working very hard so that you never have to go to the ER again and never have to have any more pokes or shots. That is why we have a team helping you fight the bump."
(This was followed by some more comforting words, songs etc.)

The bedtime continued to be restless but I was in excruciating pain from my shoulder and completely fatigued by this time, so Steve stayed with Alex and ZG and I slept in the nursery (the master and nursery doors are inches from each other). I awoke at 1:30 to the sound of the suction machine and Alex gagging. I came in and looked at Steve and knew that he had not slept and that the night so far was very difficult for him and Alex. We finished with the suction and Alex told us his tummy hurt, so we gave him a Tylenol suppository for the pain. He laid back down and Steve got up and whispered in my ear "Watch over him" then left the room.

I watched Alex toss and turn with pain and anxiety until 2:30am. I then got up and told Alex I would be right back. I found Steve on the couch and told him that Alex was not sleeping and we needed to call the nurse. She picked up immediately and since Alex was having so much trouble with his secretions, told us to give him more Robinul and that she would call back in 45 minutes. So we did that and as I was returning the meds to the kitchen, Steve and Alex started making shadow animals on the bedroom ceiling. Pretty soon, Alex was a bunny going "boing, boing, boing" all over the ceiling and Steve's hand was a monster which was always defeated by the boingy bunny. We were laughing so much. I then had a moment of genius and went to get the 10 inch Spiderman action figure Alex had received that afternoon from Leo F. (a son of one of Steve's friends, that Alex has never met). Anyway, Spiderman was soon battling Alex's prayer bunny (stuffed animal that says the "now I lay me down to sleep" prayer) and the fun and laughter just kept coming. At about 3:30 am or so Alex finally said, "Okay, I think I have had enough." So we rapped up the shadow party; promised to do it again the next night and we all went to sleep. It was quite the night.

Saturday was a gorgeous day here and Alex spent time in his Sky chair with his dad and I made chili. We had some dear friends over and played some more Wii. Then Sunday morning came and Steve told me that "he was never so happy to see Alex awake as he was that morning." Alex had slept in and also took a long nap Sunday afternoon. Sunday was the first day that I would say was a "bad day" for Alex. Even though he had a friend over, he just was slow and seemed to have more difficulty breathing. He wore his oxygen quite a bit yesterday too.

So last night went okay. There was suctioning at 4am, but that has become the norm now. Alex has been making jokes and seems in better spirits today. It may be due to the fact that my sister and her family on driving up today and will arrive this evening. Alex has already asked if he can stay up to see his cousin!

Alex has not eaten much (if any) in the last few days. He has peed though! Praise the pee! And the nurses say he is not dehydrated. His Spider milk now has glycolax and yogurt added to it. I think some of his tummy pain is partially due to constipation and some to coughing soreness.

So today begins another day. Make it a great one! Tell everyone you love how you feel and give some one special a big fat kiss!

Love and God bless!
G