"This Was a Big Day!"

Those were Parker's words tonight. This was a big day. And a very scary day. But as I write this, it feels for now it will end on a good note.

Nurse John apologized for the comment he made about the heart damage. It was in a different chart. Thank God, because everything that can go wrong, every side effect something can have, every twist that can happen makes Parker's case a little trickier.

During the night Parker started wheezing. We don't want wheezing. In fact, apparently we don't want wheezing so much that the night time on call doctor, a tall, graying blond guy who thought he was very cool (but wasn't) decided to take Parker off the Toporol, the medicine for his high blood pressure. Wrong.....

All morning Parker was in horrible pain, twisting and screaming and yelling. He even had a few choice words for John and I.

I remember when my sister-in-law, Liz, was having her first child, Emily. This was before the days of epidurals at 2 cm's, this was when you had to bear with the pain for hours and hours before relief could come. Emily was born at St. David's Hospital a few blocks away from here. Liz was in such agony, but she is a good New England girl from VT and good New England girl's from VT don't expose their raw emotions, even the pain of giving birth. So whenever the nurses came in the room, my brother Michael was sitting in the corner facing away from Liz, like a kid in time-out. He said afterwards he was sure the nurses thought he was the worst husband/father-to-be in the world, but what they didn't know is that the minute they left the room, every bit of pain Liz felt spewed out of her mouth, venom filled words for the man who had put her in that predictament. We always got a good laugh over that.

So when Parker was nasty to John and I today, we understood. If he only knew that we would so much rather endure this pain ourselves than watch him go through it ~ but it is impossible to explain that to someone who has never held their own child in their arms.

After the doctor finally changed the order for medication, Parker started hitting the morphine pump every thirty seconds. It will only allow him to get a hit of it every 15 minutes, but I suspect pushing that little button has a placebo effect.

Later in the morning, during his most intense pain (which has now spread to his back) his blood pressure shot up. Like, to 201/178. Yes, that's right, 201/178. So they took it again. It was 198/164. So they got a new cuff and did it again. It was 184/178. I've never heard of anyone with blood pressure that high. The nurse didn't wait for orders from the doctor, he gave him a shot of something to bring it right back down and then called the doctor.

I was pretty hysterical at that point. Not outwardly hysterical, but enough to where I had to go to the bathroom and throw up. In this type of emergency you can't let your emotions out except in private. It hurts your child, so you don't do it.

However, I wasn't so calm that I didn't ask the nurse to explain to me what our rights were as the parents. We wanted SOMETHING done! Anything that would give us an indication of what was happening inside Parker's body. We understand they don't want to transport him to do the CT guided biopsy that has to be done at the other hospital. He is too sick, they said yesterday. He can't be moved that far at this time. But across the street he had his MRI done last Thursday, and we wanted another one done. Couldn't we just say we wanted it done and get it done? What do we know, we are only the parents? What we really want is for our son to get better.

My asking about patient rights brought both the doctors to see us at the same time. I will remember that because it made a HUGE difference in how we felt afterwards. They conferred, we had discussions with both of them, and in a nut shell here is what they said:
We have to be patient and wait this out. Parker's case is especially complicated for many reasons. One is, everything they do, whatever kind of bad side effect that a treatment might have, he gets. The domino effect.

The other main problem is there are multiple cysts on the pancreas, and the biggest one ~ the one causing the most trouble ~ is ten centimeters big! That is so HUGE! The pancreas is about the size and shape of a small, flat banana. That cyst sits right against the duodenum at the opening of the small intestine. Not only does that create more pain by its location, but it blocks the path any food takes (which explains why he was throwing up his stomach bile every hour to hour and fifteen minutes for a day and a half) and adds greater risk of infection. We do NOT want an infection! That would force them to do surgery prematurely. We are a bit frantic about watching his temperature.

After the high blood pressure scare and the two doctor conference, things settled down a bit. I asked for an anti-anxiety for Parker when the pain was getting him agitated and it calmed him down enough that he slept about 1 1/2 hours straight through. That was big!

I left to go to his apartment for a while, to get a shower, wash clothes, take a nap, everything I knew I would not be able to do easily once John left to go back to MD tomorrow. John will be back and forth, but for now he has to return. I feel sorry for him. I can't think of anything that could happen, except if something happened to James, that would take me away from where I am right now.

While I was gone, John called. Parker's temp had shot up over 102 degrees again. 102 degrees is the magic number we have been told would indicate an infection might be brewing in the cyst. It is the number we don't want to hear, more than anything. I threw my still-damp clothes into the car and raced back to the hospital. By the time I got there, the temp was back to normal. No explanation, it just went back down. Thank you God for hearing my prayers.

This evening they brought Parker a new bed, one that has a trapeze type pole hanging from the rafters so he can pull himself up. He is in so much pain it is hard to encourage him to sit up, so they thought this might help ease the pain a little and keep him upright with less of a chance of developing pneumonia. Please, no pneumonia.

After all that changing of beds was over, Parker settled in and seemed more comfortable than I have seen him in an evening since he got here. Let's hope it is a good night. While I was at his house today I had a discussion with God. He told me Parker has work to do for him here, He isn't ready for him yet. I will carry that thought with me as I go to sleep.

One quick footnote to add a little humor to a long, rather dreary blog. Parker talks constantly in his morphine induced sleep. Tonight he said, "Do we have to make this a reality show? Can't I just get better in the hospital without all these other people watching?" He also said something nasty about rednecks, but I can't repeat that..... :-)