Still Adrift in Hospital Hell

Since being transported from the hospital closer to our home on Friday, July 28th back to the hospital in San Francisco where his surgery was done, my son is still in the hospital. He has been in a room, hooked up to lines of saline solution, lipids and assorted liquids for 15 days! We spent last weekend with him as much as we could, once again using my dear brother's home as a home base to return to for late dinner and sleep. When it was apparent that he wasn't going to be released Sunday, we returned to our home late that evening and remained home the whole week so we could both return to work

Our contact with him has been a nightly phone call each evening. In the middle of the week on Wednesday, my husband had a short day at work and took himself down to the city for a personal visit, as much for his own good as our son's. Being in the position of utter helplessness has driven my dear husband nearly to the brink of insanity. He's a "take action" kind of guy and doesn't do well with "sit and wait" situations which is what this whole nightmare with our son has been.

Today is Saturday, August 5th. We got up early and traveled to San Francisco to check up on the situation and visit with our son. The last message we received from one of the doctors, one of the G.I. specialists actually, was that there is indeed a blockage leading into his small intestine that allows only a very small amount of liquid to pass through and nothing else. The jury is still out as to whether this is something to be fixed with a second surgery or perhaps it's a result of swelling in the area following the original surgery. Given time--an estimate of four to six months has been given--everything will return to normal. Let's see. Six months! Why, that brings us to January 2007 and if he goes that route, my child will not be able to eat one single bite of anything until then.

He now has something called a PICC Line inserted into his upper left arm. These initials stand for a Peripherally Inserted Central Catheter. This is a tube that is inserted into a vein in the upper arm and threaded along to a point near the heart. The placement of this thing takes about an hour and a half and an x-ray is taken to verify proper placement at which time the port on the outside of the arm is sutured into place. This is a larger catheter than the one he has in his arm above his right hand that has been used as a port in which all I.V. liquids have been given. The PICC Line can be used for blood draws (no more pricking needles) and he is now getting a bag of liquid in the evening which serves as a substitution for nourishment he's not getting from eating normally.

Over the past month, we have learned that everything seems to come to a screeching halt in Hospital Land once the weekend arrives. All the key players (doctors attending to your particular case and surgeons) seem to go off on some group sabbatical from Friday evening to Monday morning. It won't be until Monday, at the earliest, that we'll find out what the next step will be. All we want is something to happen, some action in a positive direction, be it to discharge him to home with this PICC Line over which a visiting home nurse will oversee for an indefinite amount of time or schedule another surgery to open up whatever it is that's blocked. We are all caught up in this medical web of frustration and it has turned out to be just about the most difficult occurrence my little family has had to deal with so far in our lifetime. We've had our times of grief, misery and sadness in the past but nothing has been as frustrating as this.

All I want is my child back home and well again. There is no joy in life these days; only worry, heartache, sadness and frustration. Believe me, it's not a diet for living I would recommend to anyone. I hope that the next time I post an entry there will be some positive news to share.

In happier times, a time that seems like ages ago, here is our son making a batch of chocolate chip cookies for the first time...and they turned out perfectly too!