Phoenix!

So many people came by today, looked in Parker's room and said, "Oh my God, what a difference a few days make!" Nurses we've had before, respiratory therapists, pharmacists, physical therapists, cleaning crew, doctors who are not part of Parker's team, the Social Worker .... So many people who cannot believe how Parker beat the odds time and time again. One person said to him, "You're a legend around here you know!" The surgeon walked in tonight and said, "I thought I was in the wrong room for a minute!"

Parker made great strides this weekend. He sat up again today, unassisted, for 6 minutes (meaning no one balancing or even touching him, all on his own!). His guts started working and the NG tube was capped off, the tube feedings started up again, without - so far - any bad effects. He still has horrible thrush in his mouth (part of the yeast infection from the picc line), so badly that he begs for water. Until late this afternoon he was only allowed ice chips.

Parker has had a highly emotional few days. Nurse Monica told us he will have to go through a grieving process, like he is in mourning. And the more he discovers about what happened to him, the more emotional he gets. We have been instructed to be honest with him when he asked questions, so last night when he asked James what the worst part was, James told him it was the two times they told us we were losing him. Parker was stunned by this news. I had sort of told him already, but he was more sedated and doesn't remember. James called and asked me to come back over to talk to him, which I did.

Typical of his sensitivity, Parker's main concern was that I had to go through that, to be told he was dying and to be here all alone when it happened. His heart was breaking at the thought. Somehow I was able to stay calm and collected when I talked to him late into the night about everything, even though I personally haven't been able to deal with it myself. It is amazing what we will do for our children. After some more discussion, we agreed that the best next step was for Parker to have an appointment with Dr. Burg, the hospital psychologist.I am his mother, and I'm too close to his pain with my own agony to help him effectively. Or without terrifying him even more.

There is so much to do. He still has so far to go. But his body is healing. His spirit is as strong as ever. He has visions of returning to work someday, of walking to his mailbox to collect his mail, of taking a shower in his own bathroom and waking up in his own bed. Of driving his car, and sending an email. And of calling me to say, Hey, I'm on my way to work, Just checking in. How are you?

Best Day Ever!

Wow! What a day! First, after my super-spoiled afternoon yesterday I slept in this morning until 7:15am. I knew that Monica had been his night nurse and Yonus was going to be his day nurse again today so I felt okay not getting there before 6:am as I usually do.

Here are the highlights of the day, bullet-pointed as my brother suggests:

* I saw, with my own eyes, Parker's heart rate go UNDER 100 several times throughout the day. There was a time when getting down to the 130's was huge, but he is getting close to a normal heart rate now. So sweet. I took a photo when it was at 111, thinking that was going to be so super-duper, but later on James and I both watched as it fluttered down to 99, 98, 97.

* We had Yonus as our day nurse, so I knew he was going to be cautious and do everything in Parker's best interest. Some of the younger nurses will only do exactly as written by the doctors, so the other day when Parker's stomach kept getting bigger and bigger and bigger, the nurse wouldn't stop the tube feeding until she had reached the doctor and he said to do it. They are afraid of the doctors. Yonus is so capable and has over 20 years experience as a nurse, and he knows what the boundaries are but also knows his job is to care for the patient, not massage the doctor's egos.

* Yonus was concerned about the bed sore on Parker's back, so he called the Wound Care PT people and the woman came, took a photo, put the cream on and actually showed us the comparison to the last photo. It looked better! But see? Yonus wanted to be sure, so he wasn't going to wait for them to come around the next day, he took action. That's why he is so good.

* Parker was more alert today and rarely needed any extra pain medicine. He said he really liked having a clear head. We talked about so many things. He had a few moments when he got very emotional and he couldn't understand why. Personally I can't see why he doesn't get it, anyone would go crazy after what he has been through! But Yonus explained to him about ICU psychosis, which happens to people who have been in the ICU for a long time. Especially when they have been without a window, like Parker has been for 5 weeks now.

* Yonus encouraged Parker to talk and to cry and to feel everything he needed to feel. At one point, when Parker was sleeping, he woke up crying and talking about missing the sounds of family. He got weepy about lost loves, and again when he read cards from old friends from Maryland (cards that have been sitting on the shelf, waiting for a day like today when he had enough strength to hold them in his hand). I think because he was so clear headed today and is beginning to be able to realize what has happened, and what almost happened, over the last two months, it is pretty overwhelming.

* James sat next to Parker's bed for most of the day. When Parker slept (which wasn't much) James read his book. When Parker woke up, James put the book down and they talked about all the things that they talk about that I don't get. But I sat in the other corner with my eyes closed, just listening to the sound of my sons talking to each other, and I thanked God for that gift.

* Parker practiced with his passe meir (not ver as I wrote before, sorry...) valve and then we made a BIG phone call. We called my parents. I know what it meant to them to hear his voice, and I was really happy he was able to do it, it takes so much energy. My Dad said afterwards that I was to tell Parker This was the best day they have had since the Cowboys won the Super Bowl! That, of course, is a little inside joke.

* Parker had his NG tube capped off for several hours today and they resumed a minuscule amount of tube feedings. I wasn't crazy about the idea, I don't want to risk anything like what happened the other night, but I knew having Yanos on guard meant nothing bad would happen, he would turn it off if and when it needed to be turned off. AND he would do all the little things he knew to do to check and make sure stuff wasn't building up in Parker's stomach.

* We found out that the reason he is always so thirty is because of the anti-fungal medicine he has to take for the nasty yeast infection. When the NG tube was suctioning today, Yanos let Parker have water (since it was just getting sucked right back out), which made him SO happy.

* Parker sat up on the side of the bed again today. It takes a bit to help him up because he has no abdominal muscle strength at all, but once he was up he sat unassisted for about 3 minutes again before it hurt too much and he had to lay back down. But every time he gets up, it works the abs and the gut and moves him towards everything working again. It was great.


* No fever, no more lasix and no apparent swelling, he is off all antibiotics (except the antifungal for the yeast), the ultra sound people came and checked his legs and found no evidence of blood clots, he had good gut sounds, got grumpy at times, laughed at other times, and we all smiled a lot today.


* Rumor has it we still might be moving the the Intermediate Care Unit on Tuesday. I am elated and terrified at the same time.


Today I was standing outside Parker's room when an old man was wheeled by on his bed. A get well balloon was tied onto one of the railings and floated along with him. The man must have been 100 years old. Maybe more. I smiled as he passed by and he reached his other hand out and said, Hey I'm graduating today! Can you believe it?