Another Day ~ Another Doctor

I met Dr. Bissett today, the Infectious Disease doctor working with Parker. He is concerned about the red rash that keeps developing and is going to look into it further. He believes its origin is linked to the IV line on his chest near the upper part of his arm. I explained that he had gotten that rash since this started and it moves around, but in the beginning it was happening after they would inject saline solution into his picc line.

Parker is more alert all the time. He isn't happy about being more alert, believe me, but I will take his attitude any day! Every time he wakes up he has to be reminded where he is and why. But now rather than fighting it he is getting to the point where, after a few moments of remembering, he knows where he is. He still can't figure out why and still looks at me with a pleading look, mouthing words I can't understand. It's scary and frustrating and sad.

His nurse last night, Jim, said this is the hardest part because he isn't aware enough yet to remember from time to time, and to be able to have the restraints taken off, so his fears and frustration are magnified.

No, Jim, the hardest part were the two times they told us we were losing him.

John is coming this week. Right now he is scheduled for Friday, but after his conversation with Parker this morning, and Parker's reaction and pleading after it ("conversation" meaning I held my phone up to Parker's ear for John to talk ~ then I had to disinfect the Blackberry before letting it out of the room) he is going to try to come earlier. I know without a doubt that Parker will rest more easily when John gets here and it will help his healing. I know that with every ounce of my being that makes me a mother.

Parker wants water. He can't have water, his bowels have to rest. I wonder if starting the feeding tube into his small intestine early last week had anything to do with the crash he experienced on Wednesday, requiring the emergency surgery? I can only swab out his lips and tongue with the green lollipop sponges very briefly because he tries to suck the water from them and poor Jim almost had heart failure.

Dealing with Parker right now is like dealing with a 3 year old. He has a need, it must be filled. He can't rationalize why it can't happen. A lot of that is with drawl from these drugs. I know that. It is was it is. But at least he has needs! For that I remain eternally grateful, to God, to the doctors and nurses and specialists working with him, to all my family and friends across the country who are praying and sending well wishes and support in the form of everything from money to gift baskets to gift cards to care packages to text and email messages with good thoughts for the day ... everything. Thank you, thank you, thank you! Your kindness and generosity are making it possible for me to stay here by his side, to get him through this.

Parker's temp is 101.3 this morning, but Dr. Bisset said he would completely expect a fever, especially with the red rash thing on his body. I wonder if that red rash is key to something we have missed? Something that is keeping him from progressing towards wellness?

Every doctor keeps reminding me how sick he is, how far he has to go. I KNOW that, thank you very much!

I'm getting tired and cranky. I had two and a half nights sleep from having the stomach flu and felt this morning like I could easily stay in bed and sleep until September. I think when John comes I will try to sleep through two nights and one whole day to gather strength. I know there are others who can come relieve me, and I appreciate those offers so much. But there are some things only a parent can do, and this is one of them.

With the temp over 101 this morning I keep waiting for the weekly crash. Please God, please let him stay stable this week and continue to heal. Please???
I love you Parker, please help your body get well.