Noisiest Room on the Ward

 

When the patient, family, corpsman and nursing student all notice how inept a nurse is, you know it's bad.  I don't mind answering questions about my son.  I don't mind answering questions about when he last received a certain medication or if I knew about a certain medication or when a certain procedure was completed to save time in looking through the entire record.  But when a nurse asks me to explain something as complex as a J/G tube?  That's bad.  When a nurse has to go out and get a corpsman and other nurses to come in and explain most of the procedures to her the entire day?  When a nurse allows the tube feeds to run out?  That doesn't give me much confidence, especially when my son is a hands on patient.  She was wearing purple scrubs, so all I said all day was "crush the grape."  I DC'd the nurse.  We will not have her again.

I got the only complaint of the day out of the way early.  Because besides the inept nurse, who was obviously too new at her job to be given such a complex patient, we had a really good day.
During a conversation with one of the night nurses and a nursing student, she laughed and said we have the noisiest room on the ward!  He (the student) pointed at me, which earned him a slap.  Between the bed (it runs on electricity to keep the air flow through the sand), the oxygen, the TV loud to be heard over the latter two, me yelling at the Yankees tonight, Derek and Kyrstina laughing, the three of us usually laughing, the constant stream of doctors, therapists, visitors, etc., the room is quite active.  Derek has become quite popular among the doctors and nurses, and they often stop in to see him, even when not treating him.  His room is always busy.

Today we had visits from Master Sgt Bell, as usual, the infectious disease team, ortho, the pain team, Dr. Bograd, Dr. Perdue, Dr. Goodlett, Dr. Howard and team, WTB, AWB, Sam (OT), and MJ (PT).
In addition, Team Allen came by!  We love when they visit.  Chaz always lifts Derek's spirits.  He was where Derek is now several months ago, so he gives Derek hope.

After Team Allen, Joseph Westphal, the Under Secretary of the Army and Joseph Bowser, his staff assistant and an amputee, paid a visit.  What gentlemen.  They seemed genuinely interested in Derek's story and asked several questions about what happened to him, how his treatment has been, what the doctors have been saying, how long they think he will be in the hospital, how long we have been with him, etc.  They read several of the entries on Derek's flag, looked at the pictures of the family, and spent a long time visiting with us. 

Derek goes back to the OR tomorrow for a dressing change on his flap.  They usually do that in the PACU, but given his tendancy to drop his stats, they feels more comfortable having the entire anesthesia team on hand.  I agree with them erring on the side of caution.  He is second case tomorrow, so I don't have to be there at 05:30. 

If his stats stay up tomorrow, they might remove the trach tomorrow.  Dr. Howard isn't sure about that because of the constant trips to the OR he will need to work on the arm, and he will talk to the trauma team, but just the thought of it means he is getting better.  They made the breathing treatments PRN, meaning we call for them if needed, they are no longer scheduled on a regular basis.  That caused a little problem for us today when we called for a treatment and they said we had none scheduled, but Dr. Goodlett got it straightened out.

When MJ from PT came today, she removed the wrap from Derek's leg to put a stocking like thing around it in preparation for his prosthetics.  It revealed a nasty looking sore from where the wrap had been a little too tight.  Dr. Bograd will dress it in the OR tomorrow when he dresses the other wounds.  And Sam told us that they no longer necessarily send patients to Richmond for polytrauma because since the integration they now have the facilities at the new Walter Reed.  I need to discuss this with Dr. Perdue because it is Derek's wish to stay right where he is.

Tonight I went for a walk to give Derek and Krystina some alone time.  I was walking down the hall and could hear them laughing.  The night nurse called me over and told me not to go in the room because they were having a good time.  She told me they were so cute together and asked me where we ever found her because she was a true gem.  She really is.  Derek is lucky to have found such a wonderful woman.  He is really blessed.

So, tomorrow is 70 days in Bethesda.  We have come a long way.  Derek has a poster in his room - Celebrate your successes, big and small.  That is what we do.  We have been concentrating on the postive with Derek since we arrived.  We talk about positives in his room.  If there is negative information, we talk about it outside and then put a positive spin on it before bringing it to him.  He has a very postive attitude.  When talking to any of the brass or VIPs who come to visit, he is always so postive.

Tomorrow is going to be a busy day.  Derek has a lot of company coming for his birthday this weekend.  My car is fixed (defective battery), so I have to find a ride to the Ford Dealership.

P.S.  Yankees - I'm mad at you.  Jeter, you're fired.  A-Rod, you too.  Bases loaded?  Are you kidding me?

Almost Less of a Patient, More of a Person

 

Today was pick on me day, and Derek loved it.  Seeing me get picked on all day gave him such joy and pleasure.

Master Sgt Bell came in and told Derek how she knew I was upset.  I'm a little bumble bee flitting from one thing to the next and never sitting still.  The look on her face as she explained this was hysterical.
SSgt Anson Jones showed up and hassled me.  He is Derek's squad leader.  It doesn't help that he is bigger than me.  He made me call Ford Roadside Assistance and take care of my car today even though I did not want to leave the hospital at that time to go meet with the tow truck.  Sat down with me and would not stop staring at me and picking on me until I called them to get my car towed to a dealer for service.  And did he pick on me!  I matched him comment for comment, but he kept going.

But he got his.  He wanted out of there before the brass arrived but he got caught!

Gen Bill Wall paid a visit to the ward today and visited with Derek for a few minutes.  These visits do help with his state of mind.  Gen. Wall was very nice.

However, while SSgt Jones was in the room, Dr. Perdue came in.  Derek and Anson ganged up on me to Doc Perdue about me taking time for myself.  Doc Perdue wrote me a prescription!  It says, "Fix car.  Take care of self."  I won't fill that.  Not yet.

And Dr. West and Dr. Goodlett also picked on me today.

The nurse said they pick on me because I meet them toe-to-toe, line for line.

But I did try to fix my car.  I met Roadside Assistance and they jump started the car.  He said it was just a dead battery and if I let it run for half and hour it would be fine.  They are coming back tomorrow because when I turned it off, it would not start again.

Dr. Howard and Dr. Martin from plastics came to check the flap.  Dr. Martin said he missed us "this much" and help his arms open wide and gave me a big hug!  Then Dr. Howard gave hugs.  I do love Derek's primary docs.  They said the flap looks good.  Friday will be a dressing change in the OR, not the PACU like they would normally do because of his BP issues.

While there, Drs. Howard and Martin helped move Derek in the bed to make him comfortable.  Unfortunately, the bed was broken and they needed to get the bed company to send a new one.  The head was not inflating properly.

Over the last three days Derek's white count has been holding steady in the 11's.  Infectious disease is happy and planning on stopping all antibiotics on Monday.  Three days later they will culture his wounds, and if nothing grows, no more contact precautions!

Dr. West said Derek is becoming less of a patient and more of a person every day.  We celebrate his successes and try to downplay his setbacks.

Have I said I love Dr. Ronald Goodlett?  Yes, I think I have.  Derek was getting ProStat.  It's a protein syrup that was put into his G-tube, but this new tube is so thin that some of the nurses were using the J-tube.  When Dr. Bograd found out, he nixed that and said it had to be given orally.  Yuck!  It tastes nasty!  I told Dr. G to drink it first, and he refused.  He then told me if I make Derek drink a protein shake or drink every day, he will DC the ProStat.  I agreed.  He then told Derek if he throws up because of it, it is my fault!  Brat.

But we love him.  Derek's G tube was seriously clogged tonight.  They were going to have to insert a tube into his nose to relieve his gastric distress.  The nurse was working on the tube with this solution, and I was sent to get Coke.  A bratty nursing student accompanied me on the run, picking on me the entire way.
After the nurse couldn't get the tube cleared, Dr. G worked on it.  He got it!  He was very pleased with himself.

The LPN in the room with Derek for the night did not give me a lot of confidence.  I tried to talk to him about Derek's needs for the night and he just stared at me. Derek's needs with the flap are increased.  I tried telling this gentleman to watch him carefully so that he did not move it.  Last night he woke up and started pulling on his arm, trying to move it, because he was confused and momentarily forgot when he first woke up.  When I warned this man to watch for that, he just stared at me.  Not the response I needed.  Communication is very important to me.  I spoke to the charge nurse, but she had never worked with this man.  She saw my face and switched out the one-to-ones.  I felt so much better. 

I do not mean to be difficult.  I am simply advocating for Derek.  He cannot fight this battle himself right now.  He did his fighting.  He will fight again.  He is doing so much more for himself every day.  Hopefully soon I will be able to step back and let him take over completely.  That will be a wonderful day.  Until then, I have to be here to be his voice and his advocate.

Today Derek received a very special gift.  Sgt Chris Brown and his two sisters, Tracy Brown Lane and Dana Brown Ritter, Mike Ritter (Dana's husband), and their father, Chris Brown visited.  Sgt Brown brought a flag dedicated to Derek and signed by Derek's company, who are still in Afghanistan.  It was very moving and cheered him up a lot.  Because of the flap surgery, Derek is restricted in his movement and cannot sit up.  Krystina and I read the signatures to him and he smiled.  "Go go power rangers," "you are my hero," and so many other wonderful comments.  The guys really miss him, and Derek misses them.  The flag is hanging in Derek's room where he can see it.

All in all today was not a bad day. 

Derek and Krystina continue to grow and their relationship is just adorable.

Krystina gave Derek some soda, and Derek said to her, "woah! Little people, big world!  I'm trusting you on this. It's a big mission."  Then when the TV broke, he called out, "I need an adult!  Stat!  You don't count, Krystina.  You're too short."  When I told him she was the only one who knew how to fix it, he told her he would give her a pass that time.

They bust on each other, but they love each other.  I am blessed to see them cling to each other during this time.

"My Cat Is Deader Than A Toenail"

 

It was once said to me, if I didn't have bad luck, I'd have no luck at all.  In a lot of ways, that is right, but at least Derek is still here.

The Yellow Ribbon Fund schedules special events for wounded warriors and their caretakers/families. 
Yesterday, Krystina and I were scheduled for hour and a half massages when Derek went off to get his flap.  It was a long surgery, Dr. Howard had my cell phone number, and the hotel was only a mile away, so I felt okay leaving base.  My car had other ideas.  Dead.  Not even a tiny little spark.  I went to text someone, "my car is deader than a doornail," and the swype feature on my phone changed the words so I texted, "my cat is deader than a toenail."  Nice.

Eliza from the Yellow Ribbon Fund kindly came and drove Krystina and I to and from the hotel so we could get our massages!  It wasn't the entire time because we were late, but it felt so good!
My car is a new lease so it should have been fine sitting for two weeks, but I guess not.  I have not had time to call Ford Roadside Assistance, but a nice nursing student, Mark, who was working with Derek tonight offered, "do you want me to jump you tomorrow night."  Interesting choice of words, kid.
So, anyway, yesterday morning Derek did get a flap.  After a weekend of high blood pressure, so high that the doctors gave him lasik to try to get some fluid off him and get the pressure down, he once again bottomed out under anesthetic.  So, he got the TEF.  His arm is attached to his chest for the next three weeks.  He was given a nerve block in his shoulder to numb the arm, so hopefully that will keep him somewhat comfortable.

Didn't work well last night.  He did not sleep and was very uncomfortable.  We stayed at the hospital with him until almost one a.m., and I was back there this morning at 07:15.  Sleep?  What's that?

After his surgery, he was supposed to go back to the ward.  Derek's lungs had another plan.  Not only did his BP bottom out during the surgery, but his respiratory status did as well.  Instead of to the PACU, he was sent to SICU on a vent.

After a couple of hours, they were able to wean him off the vent, but the decision was made that he was to stay in SICU for the night for flap checks, which could be done on the ward, but Dr. Howard wanted the one-on-one nursing care.

Unfortunately, he did not get that care today.  His nurse was horrible!  Not only did I complain to the charge nurse today, but I am filing a complaint tomorrow, and Derek said he wants to file one!  So, we listed all of our complaints tonight, and I will go file what he wants said tomorrow.  He said it was the worse care he has ever gotten!

Not only did she fail to do the flap check every hour, she "forgot" to get him ice until she was asked a couple of times (she has one patient), she came in to unclamp the G tube and then walked out without doing it so I found someone else, she did not drain any of the fluids all day, no pin care, I did the trach care, etc. 

Derek had an ice pack on his forehead and a fan blowing in his face yet she took his temp with the forehead thermometer.  I told her that was not an accurate reading, and she said, "well, it's normal" and walked out.  I called her back and repeated myself and explained the conditions.  She said she would have to look for an oral one.  Three hours later.  She came to check his temp again on his forehead, and I stopped her.  She said, "I guess we could turn off the fan for a few minutes" and walked out.  Did she want me to turn it off?  She didn't ask me to, and I didn't.  I walked out and found someone to go get an oral thermometer like she was supposed to do hours before.  I knew he didn't have a temp, but it was the principle.

Derek had a Fentanyl patch for pain on his chest.  We believe it was taken off during the surgery because of its placement.  But just to be sure, they said it would be safe to put a new one on at noon today.  She walked in at nine with it.  I asked her to get me a doctor to make sure it was safe.  She claimed she called the pharmacy and they said it was fine.  I asked her if the pharmacist was a doctor, because I told her I needed to speak with a doctor myself.  An hour later a doctor walked in.  Minor, but when a patient or family member wants to speak with a doctor about a safety or medical concern you get a darn doctor!
She transferred him to the ward with expiring medications, no machine for his tube feeds, no pumps for his medications, etc.  All of it went with him to SICU, so it should have come back with him.

The worst thing she did concerned the g-tube.  Dr. Bograd was very specific with me and the nurses on the ward about its use.  Unclamped all the time, draining to gravity, and then clamp it for a half hour every four hours.  This way most of what he eats (full liquids) will drain out, which will allow him to eat and drink, but keep him from getting naseous until his stomach wakes up, hence the clamping for short periods.  She read it the other way - clamped all the time and only unclamped for a half hour every four hours.  I didn't notice until after he had breakfast and nothing was draining.  I checked the bag and called her.  She argued with me!  I told her to find me a doctor immediately.  Two hours later, I ran Dr. Bograd down in the hall.  I had been looking for someone the entire time while trying to keep an eye on Derek.  He said he felt fine, so I didn't scream for a doctor from the door, but I wanted it fixed.  Dr. Bograd said, "you're looking exasperated."  You think?!?!  He fixed it.  I love him.

She really didn't know what to make of me when the x-ray techs showed up to x-ray his pelvis.  I asked why.  I was looked at like how dare I.  Oh well.  If you are going to be pulling him apart for an x-ray, I want to know why.  She called ortho who said it was to check on the status of the pelvis for possible removal of the x-fixes in two or three weeks.  And they needed to do an x-ray today?  The day after his flap?  When he was in a lot of pain?  I told them to get someone from ortho to come and see me and sent the techs packing.  I haven't seen ortho yet.  Dr. Borgrad thinks they are afraid of me.  Am I really THAT scary?  I asked Dr. B how he would be if one of his kids was lying in that bed.  He said he would be worse than me.  That's all I needed.  Dr. Goodlett says I love that line since I seem to use it a lot.  It humanizes the patient for some of the doctors.

Dr. Howard said to her and me this morning that he wanted to be in Derek's room when they transferred him to the new bed and to call him when we were on our way.  We were going to put him back on the red bed because it has better chest PT built into it and take him off the air flow bed.  Dr. Howard wanted to check the arm during the move.  The orders came in, and she never called him.  She sat on her fat butt waiting for Dr. Howard to come down. 

I said to her a couple of times that "Dr. Howard" needed to be called, and she said she called "plastics" and they were in surgery.  Dr. Howard was waiting for us on the fourth floor for a while.  She never called him.  I finally spoke with him, and he said he was waiting for us.  The move to the new bed went well, but the new bed hurt the sores on Derek's backside, so Dr. Howard made the decision to move him back to the other bed.  He said he would talk to respiratory about the chest PT.  I loved seeing Dr. Howard and a couple of other doctors in there lifting and making sure he moved the right way.  That was team work.
The good news is the flap looks great at we are back on the ward!  I am so over SICU.  Whatever longing I felt is gone.

And we've got Dr. Goodlett back.  He's the intern on the floor, and I love him.  He is so good and so attentive.  He let me vent and took great care of Derek.  He stands there smiling with his cute little dimples while I vent, and when he really wants to calm me down, he shows me picture of his precious baby girl.

All I ask is that you do your job, give Derek the care he deserves, communicate and be polite.  Is that too much to ask?  For some, it is.

I was told the definition of insanity is doing something over and over hoping for a different result.  Well, I am trying over and over to get some of these teams to work together, communicate and not make me fight so hard every day.  I am certifiably insane.

Derek and Krystina had a laugh riot and bantered a lot these last two days.
K: "OMG I can't touch you anywhere cause it would be ow you're pulling my wire, ow you're pulling my tube!"
Derek: "I GOT BLOWN UP!"
K: "well gee, I didn't know that the day your mom called me, thanks for explaining!"
Derek: "I broke it down for you Barney style"

Krystina put an icepack on his head and apparently, he thought it was too hard:
Derek: "what is wrong with you?! You need help, you just smacked me with an icepack"
K: "figure it out and help yourself now, I'm done"
Derek: "no!  stop!  I need help! I need an adult! But you don't count cause you're short"

K: "Derek, do I REALLLLLY have to marry you?"
Derek: "uhm, YEAH!"
Our Derek is back.

This has been a fun two days.  Hopefully tomorrow will be calm.  No surgery!  Woot!  First week with only two surgeries scheduled!  Derek is getting better all the time.  One wound vac, only two surgeries, it's getting there!  A few steps backwards this week, but so many more steps forward!

He looked at me tonight and said, "Thank you, Mom.  I love you.  You've done so much for me already."  Made my year.  He told one of the nurses he would not be where he was if not for Krystina and me.  The nurse agreed.  The nurse told him that he would still make it, but it would take him a heck of a lot longer, and that if he was the one lying in that bed, he would have no one by his side, so Derek is lucky.  That breaks my heart to think of the soldiers who have no one. 

Derek needs me right now.  I cannot be anywhere else.

No Luck, Only Sacrifice

 

Derek loves tattoos.
Derek's first tattoo was a lion on his chest, because he is lion hearted.  It is to remind himself to keep pushing, never give up, and that he has the heart of a lion.  One of the doctors asked me if he liked Harry Potter and if it was the Gryffindor lion, and another wanted to know if he was a Leo.  No to both.  It's his lion heart.

Derek has one tattoo on his back.  Does anyone remember the show Angel?  He had a griffin holding an "A."  Derek loved that tattoo, so he duplicated it with it holding a "D."  That's his tattoo for himself.
He has a tattoo for Krystina.  We told him that it is a bad omen for a relationship to have a girl's name tattooed on your body, so instead, he chose a claddah ring and had the heart colored her favorite color - purple.  The coloring is simple exquisite.  When I saw the purple heart, I told him I hoped that it was an omen.  He told me a couple of weeks ago, it was.

The tattoo that really struck my heart was the one on his upper left shoulder.  It was a surprise for me.  A four leaf clover and on each leaf he has the name of one of his siblings - Michael, Kellina, Ryan and Sean.  Above it, it says, "No Luck, Only Sacrifice."  It gives me chills just thinking about it.  The picture of it was taken of Derek in his wheelchair with Krystina's head on his chest.

In McDonalds a couple of weeks after we arrived, a young woman approached us and asked how he was.  She said she was on the medivac, and she was fine until she saw that tattoo.  The tattoo brought tears to her eyes and choked her up.

This is the type of man Derek is.  He would sacrifice.  He would put himself in harm's way.  He did that day.  Without concern for his own physical safety, he did his job.
His future plans for tattoos include one to honor my mother, my father and me, because he said we have meant so much to him in his life.  He vacillates between what he wants for the exact tattoos, but those are his current plans.

Whatever he wants, I will support him.  He is my son, and I love him.  I plan on getting a purple heart with his name to honor him.  I told him about it, and he smiled.  He is my boy.

"No Luck, Only Sacrifice"

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!

Communication 101

 

Family visiting and helping raise Derek's spirits is the best thing for him.  Today, my father left after spending four days with us.  Krystina's Dad, Grandma and Grandpa thereafter arrived for the weekend.  That is a few too many people for the small room, and Derek was a little overwhelmed, but family understands.  There is a waiting room down the hall, and since the important thing is visiting Derek, they stayed in the waiting room and came and went as he was able to visit.  They stayed all day, visiting at short intervals, and will be back tomorrow.  They love Derek and just wanted to spend time with him when he was able.

Derek's spirits were definitely raised by the visit.  He told them he will be a walking maching and would be running by next year!  We don't doubt it.

Today was a little rough medically, but the spirits were soaring high.

Blood pressure issues plague Derek.  In the OR, the BP runs too low.  During the IR procedure, they uses versed, fentynal and propofol.  They use similar agents in the OR, and they seem to work; however, for the type of surgery he gets, he also needs muscle relaxers and paralyzing agents.  They reduce the BP.  Albumen (sp?) worked to raise the BP on Friday.  They are hoping this works enough to raise it on Friday.
But whatever the issue, the BP is a little too high right now and he is retaining fluid.  That is not good for this repiratory status.  Lasik was ordered tonight to reduce the fluid.  We will see what the morning brings.
The nurses were concerned with the color of Derek's urine and called the on call day doc who ordered a culture.  Thankfully, Dr. Bograd showed up at just the right moment.  He knew the cause just by looking at it - the placement of supra pubic yesterday.

And Dr. B tried to guess how to pronounce my name.  Turned red at my teasing.  I let him off the hook and explained the Irish phonetics to him.  He is such a cutie.  He has three year old twins and showed me pictures!  I love this doc, but he might be on my list after something that happened tonight.  I will wait until he explains himself tomorrow.....

The night nurse told me they were holding the Tylenol to see if Derek ran a fever....  wait....  Tylenol?  Didn't I DC that through the docs a few weeks ago?  I had to go through several docs to get that DC's when the pain team put that on the list without discussing it with me.  Took a couple of days, but I finally got it agreed to that we would wait until all antibiotics were finished before starting to worry about weaning off narcotics by using Tylenol for pain.  And he is on Tylenol now, for what?  And more importantly, why wasn't I consulted?  I was told the pain team ordered it and Dr. B signed off on it.  We will discuss this tomorrow.

One of the highlights of my day was a conversation with a couple of nurses after yet another incident with an RT.  The Respiratory Department is seriously going to dislike me.  Oh well.  Do your job and you will not have to worry about me.  The nurse wrote one up tonight and I will follow up on Monday.

Derek needed to be deep suctioned.  This is where the catheter is placed down inside the lungs through the trach or nose.  The nurse, corpsman or the RT wears sterile gloves if it is going into the trach because it is a sterile procedure.  The nose is not a sterile procedure because we have filter in our nose.  There are no filters in our throat.  This is how it was explained to me in SICU.  The one nurse tonight said there is some debate about it.  When I explained that to her, and said that made complete sense.

The RT tonight told me the air is not sterile, so this is not a sterile procedure and he did not have to wear the sterile gloves but would if I wanted him to wear them.  I told him it was a sterile procedure because there were no filters in the throat and he was going into my son's lungs.

Derek was protected tonight but what about his next patient?

The problem is the Feres Doctrine.  Active military cannot sue a military hospital for malpractice.  This is nonsence.  These doctors and techs have full immunity from every type of gross negligence no matter what they do.  They don't have to be careful.  They don't have to care.

I've found that most of them do.  But there are some that just don't.  Hypervigilance.

But the nursing staff is awesome.  And the main doctors are wonderful.  It's the ancillary staff.  I'm getting fed up.  I'm raising hell.  The nurses tell me I'm the best advocate for me son and I need to keep making noise.  I do not need any further encouragement.  Now where did I put that bull horn?  To heck with that.... I can be heard without it!

Have a great night!

Lost Marbles

 

Has anyone turned any marbles in to the Lost and Found, because mine are missing......
I had heard this was a roller coaster, but in the past, we had a couple of calm days.  This has been eight days of stress and battles for me.  Instead of a roller coaster, right now I feel like I am on Free Fall.  But the good news is, Derek is improving.  That's the goal.  I can handle the stress and battles as long as he continues to improve.  I've been at the helm of the ship for years on my own, I think I can do it for a while more.

I escorted Derek to PACU at 05:45 this morning and noticed that his tube feeds had been stopped.  Why?  Shortly after I left last night, the night doc noticed something in the notes that when IR places a new tube it cannot be used for 24 hours so his feeds were stopped.  But IR had said that the tube was good to go, so why did he stop it?  I was ready to kill because Dr. Goodlett (ward intern) said they were to start as soon as he got back.  He went all night without nutrition.  I hope that night doc goes 24 hours without food because he was wrong.  Dr. Bograd (trauma resident) took care of it, but I already pitched a fit.  If I had stayed last night and not gone back to rest, it would have been taken care of last night.  I told Dr. West I just wanted the IV drip of caffeine set up.  He said that wouldn't work.  I'm willing to try.  I'm not picking up Dr. West's breadcrumbs...  yet.

Surgery was a washout of the arm, replacement of wound vacs and replacement of the supra pubic catheter. 

Unfortunately, the supra pubic was not placed properly.  Derek woke in the PACU in pain and needing to pee.  Krystina and I walked in to chaos.  Bograd was there trying to help him and paging urology to fix it.  They got a bin and wanted him to go on his own.  He said to me, "Mom!  I think I'm peeing!  Can you look?"  Just what I wanted to hear from my almost 22 year old son.  He's not shy.  They got it replaced and then we proceeded back to the floor.  The urologist looked at me and said, "At least you know he can do it."  Thanks for that.

Had a little fun with Dr. Bograd after that.  I am trying to make him pronounce my name.  He is dodging me.  I am sure he has asked someone how to pronounce it and will come back next time with the right pronunciation even though he said he would figure it out on his own.  He told me he was afraid to try because he is in my good graces and doesn't want to mess it up.  I forgive him his one little indiscretion from weeks ago because he has given Derek awesome care since then.  Mispronouncing my name is not going to matter to me, and I told him that.  I called him a chicken, and let him go.  Twice.  He said he'll be back with the pronunciation.  We'll see.

Best news from surgery was that albumin (sp?) raised his blood pressure, so that might allow them to do the free flap on Monday.  Dr. Howard came in and discussed it.  His concern is a five to eight hour surgery getting albumin might affect his pnuemonia and all of the fluid we just drained from him this week.  He walked in convinced we were doing the pedagal (sp?) flap but walked out hoping anew to go with the free flap with the other as back up.

After talking to a number of people about both procedures, and after having extensive conversations with Dr. Howard and Dr. Perdue, whichever they decide in there, I will trust Dr. Howard to make the right decision.

Dr. Ron Goodlett is on leave this weekend to attend a wedding.  He came by today with his adorable little daughter.  She is six months old and absolutely precious.  He asked about Derek and addressed my concerns, even though I was not discussing them with him.  He is an intern doing his rotation on 4 center right now.  Can I keep him?  He was on the SICU before and is my familiar face on the ward.  I felt more comfortable here knowing him but now I love him.  His bedside manner is top notch.  Some of the more experienced docs could learn from him!

Master Sgt Bell came to visit this evening and told Derek that he could tell all of his buddies that a Master Sgt wiped the sweat off of his brow!  She is a joy!  We will be so sorry to lose her at the end of October when she retires!

Tonight Derek's potassium is dangerously low so they did an EKG which was not reliable and are running a continuous drip and giving him nasty tasting meds.  Due to the new J/G tube that was placed, they cannot give him meds in it because it is too small, so he is swallowing pills and has to swallow the nasty tasting potassium every two hours until the blood level is checked again.

I had a crisis of confidence before I left.  I addressed it with the charge nurse, the awesome Janea, and then I felt better.  Derek said he wanted to be suctioned.  His nurse tonight, who has never had him before and didn't know the history, asked the corpsman if he had ever suctioned before.  He hadn't.  She left the room.  Fifteen minutes later, when she had not returned, I started making noise.  Derek didn't say he wanted to be suctioned immediately, so I waited a few minutes.  The corpsman got another corpsman, and then they couldn't find any catheters.  It took a few minutes to find the catheters and for the second corpsman to get the suctioning finished.  Had he been in respiratory distress, it could have been disastrous.

What happened?  She wanted the corpsman to learn how to suction so she went to find the respiratory tech who had just left to teach him.  Sorry.  Derek has been in so much respiratory distress this past week that I would never have allowed someone who has never suctioned before to deep suction him.  How about asking me if it is okay? 

I know this is a teaching hospital.  I know that everyone has to learn.  But patient care and safety is first and foremost.  When you have a patient who has been in severe respiratory distress, you do not put them in harm's way by having a beginner suction them.  And you ask permission.  Whenever I've been with student's before, they have always asked my permission before doing anything on me.

Crisis of confidence.  But for the fact that the nurse who stood by his bedside last Saturday night is charge nurse tonight, I would be sitting there right now.

If God brings you to it, He will bring you through it.  He must think Derek is pretty strong, because He has certainly brought him to and through a lot, and there is a lot left to go.

There is a contest to award an engagement ring to a deserving couple, and someone nominated Derek and Krystina!  The facts were a little skewed, but the contest owners allowed me to add a paragraph.  Please vote for them.  It would be wonderful to give these kids something special.  Derek has been trying to save for a ring for Krystina, but we all know the Army does not pay a lot!  They are entry 104! 
Even if they don't win, they have the best prize of all - each other.

http://www.myperfectunion.com/list.php?entry_id=104

I need to go find my marbles now.  They are rolling around here somewhere.