Monday, October 3, 2011

Walking on Peg Legs

A quiet day....  One without a battle....  I have waited for this for ten days.  Ten straight days of one battle or another, and today was peaceful.  Not all awesome news, and still a little bit of a rollar coaster, but that's the healing process.  I can handle that.  It's the battles that wear me out.  Today was all calm.  Even having to call on ortho to come and give me the update from Friday's surgery was okay.

Today dawned at 06:30 so I could get to the hospital and meet with the pain team.  I didn't want them to slip in when I was not there after the Tylenol debacle.  They came around 10:00, I believe, and I discussed my concerns with giving medications without discussing them with me, but most importantly, giving medications without being fully aware of all of the notes in the chart.  The main doctor who was on the rounds said he would check into who wrote the order and take care of it.  I know who and gave him his name.

Blood pressure was high again (around 150/100) all day, even after the lasik last night, but when Dr. Howard came in to discuss the flap again, our awesome nurse Angela made sure she talked to him.  Dr. Howard is happy that the BP is up a little with the surgery tomorrow and does not want the SOD messing with it overnight.  He told the nurse to have them call him tonight if there is a concern and it is in the chart.  Honestly, I would rather he sleep if they are going to be messing with all of those little vessels and such in Derek's arm tomorrow!  But we cannot let the BP get too high and do damage.  The night nurse knows the safe parameters.

Dr. Howard knows how to deal with "Nuerotic Mom."  He answered all my questions and was calming and personable. 

So, forget the IV drip of caffeine.  One of the nurses and I have decided on an IV bottle of vodka or xanax to help me out right now.  I think it will be a much better idea.  Krystina's Mom, the awesome Raff, is planning on spiking the IV poles in her nursing home in the future, so let's get started now!

Yesterday, Krystina's Dad and Grandparents came down, and they left today.  The Dresslers made a long trip for one night and a few hours with Derek.

Also amazing is Pat McGinley, a childhood friend who used to annoy the heck out of me in Irish step dancing class.  He drove down from Jersey for one hour with Derek and then drove back today.  He is an amazing friend.  So thankful to have him in our lives.

Derek's white count is up a little to 11.9 (11,900).  The safe level is between 5 and 10, with below 12 not being too big a concern.  It is always expected to spike after surgery due to them messing around with things and the body's natural reaction to protect itself.  This is pre-surgery though.  Dr. Fiske isn't so concerned at this point and wants to see it play out.  Since it is below the 12 mark and he is doing well, we are just watching it.  The WBC is only one marker, and the others are okay, but it is the easiest marker for me to watch with my non-medical brain.

I was told by one of the nurses that I should seek employment as a full-time patient advocate because I am an excellent advocate for Derek and I get a lot of the medical intricacies - at least enough to follow, and if I do not  understand, I ask.  I make sure that each doctor reads all of the notes, and when they slip up, I am there to catch them.  She says I could be great following up with different patients, especially those who do not have family advocates, to make sure that communication lines stay open between the different teams of doctors and that the patient's care is paramount.

Remember the house of cards on the table?  I feel as if I have passed my leg to Krystina under my supervision and I am running to all of the different teams with a flogger making sure that they do not drop their end. 

Krystina is awesome, but she is still so young.  I do not want to stress her having her have to deal with all of the medical stuff.  She is wonderful at keeping Derek's spirits up, helping with his OT (we dropped the ball a bit on that this weekend), helping assist him with whatever he needs, etc. 

One of the nurses told me that Krystina is strong and resilient, and much better than a lot of the wives and mothers she has seen around the ward.  She is amazed that she is so young yet so strong.  She really is the best medicine for Derek.

Tonight, Derek asked for Krystina's phone so he could make phone calls!  He called his friends and whomever else he wanted while I sat and read my book.  I overhead him telling his friend about what happened.  He does not remember the incident, but Krystina and I have discussed it with him.  He told his friend he will be "walking on my peg legs," and he will "beat you with my legs."  He is the same Derek we know and love!  It was great to hear him laughing with his friends!

Derek told his friends that sometimes it is hard to stay positive, but if he lets it get him down, it will defeat him, and he cannot let that happen.  He invited his friends to visit, and cannot wait to see them.
Derek is still Derek.  There may be some TBI and PTSD going on, but he is the kid we know and love.  His eyes are bright, and the drive is there.

Derek's positive attitude and the love and support of his family and friends will get him through this.  He knows who loves and cares for him since we have been with him his entire life and never left him, especially in his time of need. 

It's times like this when we realize on whom we can count and who is only there for themselves. 

My friends have been so wonderful and supportive.  My firm has gone so far above and beyond the call of duty to help me during this time of need.  My family?  I cannot begin to do that justice.  And I will not bad mouth those who deserve it, because it is not worth it, no good can come of it, and it's just not who I am except in times of extreme stress when I vent or crack.

I just want to say "thank you" to everyone for their love and support.  Whether it has been in the form of a simple card, email, facebook message, donation to the Friends of Derek McConnell fund, coming to the pasta dinner, visiting the hospital and just sitting with me for a few minutes, taking care of dinners for my children in NJ (Mary Anne Magliaro is the angel arranging this), whatever, it all means so much. 

Special thanks to Mary Anne for arranging the dinners, donations, etc, Rosie for medical speak 101 and being by my side for 30 years, Tom for arranging the pasta dinner, Maria for arranging the donations, and there are more but my lack of sleep brain is fogging right now.  You know who you are, and you know it means so much to me.  Derek has been told of all of the kindnesses.  He is overwhelmed by the goodness in people.  It gives him hope.

05:00 to the hospital tomorrow for the flap!  Hope Dr. Howard is asleep at the moment and well rested!  He's got the future function of my kid's hand in his hands tomorrow!

Good night!  God bless!

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