Wednesday, January 16, 2013

I Will Never Get Used to This

I started my blog two years ago when Jack entered Columbia Pres.  with Pancreatitis for the sixth or seventh time.  I've actually lost count. Two years later, this January, Jack was admitted to Westchester Medical with Pancreatitis.  In the beginning, I started the blog to keep a medical record of Jack's hospitalizations.  It has become much more than that. Where do I begin this time?

Following Christmas, we packed the tule and headed to Stratton with a forecast of snow.  The snow fell, by morning there was 8 fresh inches and it continued all day.  Jack and his friend headed to the woods, he was on the chairlift by 8:30.  Sam and I headed to the Sunbowl, I spent the day chasing Sam.  Everything was bumped up, while she effortlessly flew the bumps,  I struggled.  Note to self:  I dropped her off at ski school at four because I wanted her to be able ski with me, I did not want her to be able to smoke me.

We all met up at lunch, Jack could not wait to get back.  Sam and I lasted till two, when I just could not feel my legs. At one point, I considered running into a tree, then they would be forced to bring me down in a basket which seemed easier than skiing down at this point.

In the end 22 inches of snow  had fallen.  We were so excited for the rest of the week.  A vacation that Jack had looked forward to for months.  His favorite of the year. Six am, Jack came into my room with a look.  There was no need for him to say a word.  I knew.  I knew he had pancreatitis and I had to get him home.

Pancreatitis' main characteristic is extreme pain.  I wondered how I was going to get him off this mountain.  Its a four hour drive.  Sam, my beautiful girl jumped up and started packing the car.  I offered to drop her with friends, let her stay.  She said no I am coming with Jack.  I gave Jack a Tylenol PM  It was all I could think of.

We made it home, made it to the hospital and started process of getting him admitted.  The ER doctor asked what was wrong with Jack?  I said he had Pancreatitis.  She doubted me, they always do, asked how I new for sure, was the pain coming from his back?  I said he gets a look in his face.  We need to get a line in him and get medication before his next attack. Thankfully she listened and all of that happened before the lab results came back showing that he had a full blown acute attack of Pancreatitis

Our longest stay in the hospital was 9 weeks and six months with a Picc Line.  Jack was fed through a Line that bypassed his pancreas.  I took care of that line.  His shortest stay before this was three weeks, with Picc Line.  He never left without a Picc Line. I was never afraid of the Picc till two years ago, when his Picc line infection made him sicker than I had ever seen him.  Now I was terrified of this line.

You would think, by now, I would effortlessly get through these hospital stays.  I am often told how strong I am and capable.  Well no, that is not the case and thats not what happened.  I handled the days in the hospital well.  I know exactly what needs to happen to get Jack home and I spend my days there making sure it happens with the least amount of screw ups possible.  I fall apart when I go home.

At the hospital, the nurses are my front line and always excellent.  The doctors I chose ahead of time, so clearly trust them and believe in them.  The residents, are like three years, reckless and a pain in the ass.  I need the nurses and I need the Doctors i do not need the residents.  So when the resident screws up, which they always do, I throw them out.  They always complain which makes me laugh, after all I make it clear, I am not there to make any new friends, I am there to get him home.

My favorite resident story was when jack was a year old and was in the hospital for a two week stay.  Getting a line going in Jack proved very difficult and I quickly learned nurses were far better than residents at getting a vein.  The residents blew away all the good veins making it  harder for the nurses. I became very protective of Jack's veins, so when the resident came saying she needed to draw blood, I told her I need someone more senior to do that.  She said "Mrs. Clark I am the most senior person on the floor so maybe you need to leave the room while I do this."  To which I said "One of us is going to be leaving but its not me.  I have bras older than you, you march out there and get one of those qualified nurses to do this if you want the blood.

Anyone who has spent anytime in a Children's Hospital will tell you its the loneliest place in the world and over the holidays its ten times worse.  I do not think I will get used to it.  I do not think will ever adjust,  I do not think I will be ever  handle it  as well as I would like.  I get lonely.  I get scared.

My girls handle it.  Jack handles it. Before I took Jack to the emergency room, Sam hugged him, and Kate packed his bag.  Kate has spent years by Jacks side in the hospital.  Kate is one year younger than Jack.  They were inseparable when they were younger.  Jack was Kate's world, whatever he wanted to do she was right along side.  Often Jack did not have the best ideas, like the time he took the keys to the minivan, jumped in, started it and was pushing the peddle by the time I realized they were gone.  And there was Kate, sitting shot gun.  I told the two them, I did not think this was a very good idea, Jack did not agree and Kate agreed with Jack.

The hardest part is the beginning, before they get his pain under control.  Seeing him in that much pain breaks my heart.  His father will say "try giving him the least amount of morphine possible".  Fortunately the nurses and I agree, give him what it takes.

This time, Jack did really well, his numbers went down and all the doctors seemed confident he would leave without a Picc Line.  The line he had left with every other stay.  The Picc Line I live in fear of now.  Last time he did really well too, we came to this point and he was being discharged.  But then it was like the movie the perfect storm, when they see the sky clearing and they think they have made it only to have to storm engulf them again. Last time Jack did not go home, he stayed for weeks and got a Picc Line.

I was home the night before the Jack got discharged, sure that the numbers would up in the morning and he would staying.  So convinced that I cried myself to sleep that night.

Thankfully, I was wrong, Jack come home and one week later I am happy to say he is good.  I am not.  It always takes me a little longer.  The first few days, I cried on the phone to who ever would listen, I feared we would end up right back in the emergency room.  I grabbed on, I held a little too tight.  I fell apart.  I lost it.  I was so far from that strong girl who handles this so well.  I am ok now.  I always am.

A footnote:  I am blessed to have wonderful people in my life who shower me with love.  I appreciate every post, tweet, like, book suggestion, phone call, special CD and more ... I am here to say it makes a difference.  I am forever grateful.