A New Day

Sometimes it feels like there may never be "normal" again. I know Parker's life will never be the same.

The doctors have speculated that there has been something going on for many years which has contributed to his weight. Something wasn't getting processed correctly because there is no way this kid could have thrown up as often as he did from age 14 on and not been thin as a rail. Unless there was something wrong. But that is for further investigation later on down the road. Right now we are still at one-day-at-a-time. Well, really it is one-minute-at-a-time.

We had a pretty good night. John went to Parker's apartment and I stayed here. John will leave tomorrow, unless something comes up with the new doctor and they want to do this procedure (I'll explain later). John was so tired last night he had a complete meltdown. It's easy to do when you watch your child go through this and listen to the doctors speculate about his prognosis. Parker wants that nasty NG tube out so badly, he begs us with his eyes to get it out. I told him I had to have one once, when I was a teenager and drank too much at a party. I had to have my stomach pumped through a tube up my nose and into my stomach. Nasty, but mine didn't last long, I didn't have to have it taped to my nose and going down the back of my throat for days, maybe weeks. Besides, I had the benefit of being intoxicated and age 16 when they put it in.

Throughout the night Parker would get comfortable, I'd get all the lights turned off, the curtains drawn and the door closed so the room was as dark as I could possibly make it. He would rest for 15 minutes, then the pain in his back shoulder area would start again. Or he would need more ice chips (which I am not supposed to give him in the abundance he asks for, so I have to let him get mad at me as I drop one tiny chip into his mouth ~ there are moments when I am pretty sure he hates me from all this). Or he would need to raise or lower the bed because his back hurt. Or his stomach would start cramping which brings on the screams. Or if he was really resting, no doubt the nurse would come in to do something.

In the middle of the night we had to call the doctor and have his pain meds changed again. He has a patch which is supposed to be the best thing ever. Plus he was on a continuous drip of morphine in addition to the ability to pump it himself every 15 minutes. They took away the continuous drip, which meant all night he would wake up every 15 minutes and have to give himself more. That's why we called the doctor at 1:am to get that changed. We are now back to the patch and the 4 mls of morphine IV every two hours.

Doc said that's a hefty dose and to watch his respiration, so twice in the night the respitory therapist came to give him a nebulizer treatment. Because he has the gastric tube attached to his nose, strapping on the nebulizer was painful (everything is driven by this primal need to avoid pain) so I held it about 1/2 " away from his face for 15 minutes. The respitory treatments make his heart rate go up, so they had to give him more Toporol (or the IV equivilant) but then he started wheezing so they had to stop that. He is on so many meds I am not sure how any one person knows what he is on and why.

I think he probably got one two hour stretch where he slept. Other than that he would sleep for 10 to 15 minutes at a time, have some kind of activity/pain management, etc., and drift off again for a few. It felt like just as soon as I got my chair stretched out, my blanket untangled and my head just right on the pillow (positioned so I don't snore and wake him up) he would need something again.

When we decide to become a parent, the committment is for life, not just until age 18, or 21.

Yesterday the doctor said he is suspiscious of the results of the MRI because they didn't show any gall stones remaining. However, the blood work is showing a decline in liver function which would indicate there may be a small blockage in the Y shaped duct that connects between the liver and the pancreas (I think that's where it connects, if you look at a diagram of the digestive system and I am wrong, forgive me.... I am tired). So today we will add another doctor to the team who will decide whether or not to go in with an endiscope and take a look.

Dr. Garcia said we have to wait for the CT guided biopsy because he is too sick to move right now. That building is across the road which would require an ambulance, but they do not want to risk his heart nor traumatizing the cyst with infection or rupture. So for that test, the thing that will tell us what we all want to know, we have to wait.