Our Miracle

 

Suzanne got engaged!  Yay!  One of our favorite nurses!  Congratulations, Suzanne!  All of the best to you!
 
And I added a second to the "stay away from me" list.  Mr. Attitude from yesterday was super defensive again today.  Krystina thinks someone stuck a stick up his butt.  Derek woke up from surgery as he came around the corner, and he was not happy.  I commented, "he is not waking up happy," and this guy got all defensive!  Then he yelled at me to stay out of the room.  Okay, day 49, surgery 26 - I get the drill.  I wasn't going in the room until they got him set up.  Most important - DO NOT EVER yell at a family member.  (fire up the grill.  it's been turned off for weeks, but we need it again.)

Then he had the nerve to come and try to talk to me.  I'm sorry, when I am upset, it is best to leave me alone.  If you do not, I will say something we will both regret.

During rounds this morning, the talk was about Derek moving on up! (toooo the top!  to a DEluxe apartment in the skyyyy! - anyone remember the Jeffersons?)!  The thought was to let him have lunch and see how he did, then move him in the afternoon.  They wanted to discuss it with the trauma team (Dr. Perdue).  Well, Derek slept most of the day and the G-tube wasn't clamped when it should have been so we couldn't see if he tolerated his mashed potatoes.  Leah apologized over and over.  She said it was her fault, she missed it.  I should have noticed it, too.  But I didn't.  That is one of the things I had been watching, but my lack of sleep brain missed it.  At least it wasn't a major thing and it was only an hour.  I appreciated that she was honest, and she did not get defensive.  Leah is orientating and working with Peter.

After his mashed potatoes, Derek wanted PB&J, so Peter ran and got crackers, peanut butter and jelly.  He was so happy running back in with his hands full!  We love Peter.  He is one of our favorites.  And Leah is sweet too.

But it didn't matter that the SICU team was pushing for today for the move.  Dr. Perdue is being more cautious.  He still thinks Derek is too fragile.  He would like to wait until tomorrow, at least.  I love Dr. Perdue.  I think he is really making sure that Derek is given the best care possible and not simply pushing him out.

They asked me how I felt, and I have mixed feelings.  I think it is an important step for Derek's healing, rehabilitation and mental stability, but I am concerned that he is not ready to have less intensive care.
Derek is doing better.  Compared to where he was, he is significantly improved.  But he is still not out of the woods.  He looks so pale and drawn, not the strong, healthy man I knew only a few weeks ago.
He is still tacychardic, breathing rate is fast, O2 levels have been known to decrease, blood levels must be maintained chemically (magnesium, etc.), he requires blood transfusions, his white count is still elevated (16.4 today), he is still on 5 antibiotics, has abscesses in his abdomen, has infections in the system that are still resistent, has pneumonia, has blast wounds that are healing but still stage 3, in need of ongoing surgeries still at 3 a week, facing a flap within the next week or two, facing intensive hand surgery, as well as so many other issues.

I am now a little more level headed than I was when Dr. Ugo first told me that they might not be able to save him and that they almost lost him in the OR.  I was in such shock at the time I couldn't sit down and get details.  I plan to do so over the next several days with Dr. Perdue since Derek let Dr. Ugo go when I had him shackled in the basement so I couldn't leave and continue his rotation at Fort Belvoir. 

I did receive information today that has me shaken to the core.  A  doctor told me that he knew about Derek long before he transferred into the SICU rotation because he was the talk of the hospital, even before he arrived from Germany.  The doctors were concerned about him because of the extent of his injuries.  He is a miracle.  Dr. Perdue had told me he was the sickest person in the hospital.  Of the five who came to Bethesda the same weekend with Derek, the 3 are now outpatients, and the other is at another facility for rehab.

Derek is a miracle.  He should not have survived.  This is amazing to me.  We came so close to not receiving a phone call.... to instead receiving the knock on the door.  Or having the doctor walk in and tell us they did all they could, but....

On that note, I need to go next door and nicely ask my neighbors to please be quiet because it is 21:00 and I am exhausted.  5 hours of sleep each night for the last week has caught up with me.

Good night and God bless.

Top Ten Tidbits for New Families

 

Having been in this for the past seven weeks, these are my top ten tidbits for new families entering this scary new world.  Please take this for what it is worth.  It is just my insight into this new venture.  Some of this might work for you, and some of it might not.  Having lived it, I have found that this is what has helped us stay strong, and this is what is keeping me (semi) sane.

1.  In the beginning, take the first week between the initial call and the trip to Bethesda or wherever you will be meeting up with your wounded warrior stateside to set your affairs in order at home.  You might not be home for a couple of weeks, or even months.  Pack for a little longer than you think you might be there.  I only packed for two weeks, and it has been 7 so far.  Also, no matter what season it is, back a few warm clothes.  The SICU is freezing.

2.  Do not believe everything the call center tells you.  News from down range is sketchy.  I was told different details about my son's injuries ranging for loss of his arm to only soft tissue injury.  Until you get "eyes on," and get to talk to the doctors wherever he goes stateside, the most important information you can receive is that he is alive and is stablized enough to travel.  Just stay calm.... or as calm as you can under the circumstances.

3.  Set up one contact person for family and friends.  You will be so overwhelmed by everything that is going on in the hospital and with taking care of your wounded warrior that you may not be able to keep up with facebook, phone calls, voicemails, emails, etc., at least not for the first couple of weeks.  Have one person who you can call who can deciminate information for you.  Have that person field all calls and emails for you.

4.  Take care of your basic needs - eat, sleep, but remember that this is not about you anymore it is about your wounded warrior.  This is NOT the time to be selfish.  If you are a selfish person, pack it in now and let someone else take over.  However, if you do not take care of yourself, you cannot take care of your wounded warrior.  Running yourself into the ground will not help him.  That doesn't mean spend all day getting manicures, watching tv, running around town, talking on the phone, etc.  That's selfish.  But do remember to take a little time for yourself.  There is a delicate balance between selfishness and taking care of yourself.

5.  When in his room, especially in the beginning, stay positive.  If you are going to break down, step outside.  Even when unconscious, it is believed that he can hear you.  Be upbeat and tell him that he will be okay and that you will help him get through this.  You want to instill confidence that no matter how bad the injuries might be, there is NOTHING he cannot overcome.  If he hears or sees you break down, it will affect him.  In the beginning, if the doctors have negative information, step outside until he is awake enough to process it.

6.  Work with and be nice to the doctors and nurses.  They are on your team.  They are working at their best for your wounded warrior.  In the event that you have any question about the work product of anyone on your team, do not hesitate to call for a supervisor.  Just like anywhere, you will find someone who is not up to par or with whom you have a personality conflict or who is just having a bad day.  Your wounded warrior is your first concern, so watch everything and make sure he is protected.  They have many patients.  You have one.

7.    Ask questions.  Even if you think it is a stupid question, this may be so foreign to you, it is the only way you will learn.  The nurses (at least at Bethesda), do not mind answering even the most inane questions.  Be informed.  Write down everything.  Attend rounds, if you can.  Keep a journal that will help you keep track of medicines, surgeries, events, funny comments, etc.

8.  Talk to the other families.  They are a great resource.  They know doctors, nurses, contacts, places to eat, areas of the hospital, etc.

9.  Keep all business cards and write down a description of the person on the back.  You will be inundated with doctors, finance, AW2, SFAC (Soldiers and Family Assistance), Liason, Squad Leader, Warrior and Transition Brigade, etc.  Don't try to keep it all straight at first.  They have people who will help you.  I was given a journal, but bring a notebook in case they do not give you one.

10.  Try to find a little humor in each day.  It will help you keep your sanity.

Finally, pray.  If you do not pray, then always have hope.  Remember, your woumded warrior could have been killed.  As long as he is alive, you have hope.  God bless, and stay strong.

Imitation is the Highest Form of Flattery

 

5:30 a.m., the alarm sounded.  The first thought to waft its way through the fog into my semi-conscious state ... "It can't be morning. I just fell asleep."  Something has to give.  Four to five hours of sleep a night, running all day, my body is starting to protest.

As the wise and wonderful Paul Holland (Troop 1, North Caldwell Boy Scout leader) said - "you have to put on your oxygen mask before attending to your child."  It's so easy to hear that.  It's easy when I hear myself saying that to new families when they arrive.  It's is quite another thing to do it myself.  I just want to take care of him.  I do make sure I get a few hours of sleep at night and cat nap in those uber-comfortable (does sarcasm transfer through the computer?) chairs during the day.  I also make sure we get out and eat, because Krystina is little enough!

But every time I try to get a break from the room, even if just to walk around outside, do laundry, go for lunch, make a phone call, someone comes looking for me - doctor, nurse, finance, SFAC, WTB, AW2, OT, PT, Speech, RT, etc.  I had four people call me today and I had to cut all four of them off.  I wanted to call three others today as well as call back the four I cut off, and here it is 21:40, and I have not had time to pick up the phone yet.  There will be time to call people and deal with things once I get Derek out of those woods and more settled.  Unfortunately, he is taking longer than any of us ever thought he would.
Tomorrow we are here 7 weeks.  At the same time it feels like only a few days, it also feels like a lifetime.

During rounds this morning, they discussed possibly moving Derek up to the ward within the next day or two.  I want him to be ready.  I am ready for him to be ready, but I am nervous.  I like the one-on-one care in the CCU, SICU, or whatever it is called these days.  I like knowing that if we need something, we have a wonderful nurse right there ready to help us.  I have heard that the nurses upstairs are wonderful, too, and I am sure that I will get to know them all, but I have a comfort level with the CCU staff that is unparalleled.
This morning when I got there, Derek's nurse was laughing and said she and Derek had just had a great conversation.  Last night, she was so happy she finally got to take care of him.  She had assisted with him, but she was not his nurse until last night.  She told me this morning that after some of the doctors left, he turned to her, shaking his head and said, "Why were they yelling at me?  My ears are fine.  Idiots." 
I have noticed that with a lot of people who come into his room to talk to him, visitors, doctors, etc.  Not nurses, who seem to know how to handle patients the best, though.  They will use a normal voice when talking to me, and then turn and yell at him.  Or the best is when they make hand motions to show what they are saying, such as pointing to me and the door when saying they are going to talk to me outside, or putting their hands together and bowing and then pointing at him while saying, "praying for you."  Hello - ears and brain working.  It's the legs and arm that were hurt.

This morning there was some risidual confusion left from the medications, and then Derek slept all day, but he had a very busy day that could have tired him out.  I'm going to go with that and not with the reason he slept all day Saturday and Sunday.  Let's wait and see what tomorrow brings.  His confusion this morning was wondering where the other guy from his room went.  He said he was lying there a minute ago and wanted to know if he left for surgery.  He was also convinced that he had checked his bank account and did not see his pay check deposited once Dr. Dan told him it was pay day in response to Derek thinking it was Sept 14th.

Dr. Dan.  We like Dr. Dan.  I told him I was chaining him in the basement with Dr. Ugo so we wouldn't lose him.  But, oh yeah.  Derek let Dr. Ugo go.  Darn it.  That's one reason I wouldn't want to leave CCU.  We will lose Dr. Dan, but then his rotation will be up soon anyway.  He will have to come visit, and he still owes us that beer at the "Humping Turtle" (a/k/a Harp and Fiddle).  Dan wears a green jacket over his scrubs and when he runs down the hall it floats out behind him like a cape - superdoc!  We love Dan.
White cell count is down to 16, which is good, and there are no fevers.  Secretions were up, and his breathing was labored.  One of our favorite RTs, Angela, visited many times today.  Every four hours he had to have this vest on that vibrates him hard and helps break up the mucus. 

While Angela was there, she was working with him on how to talk without the speaking valve in place.  If he holds his finger over the hole of the trach, he can be heard.  We were discussing what happens when he goes to the ward and one of us is not with him and he needs the nurse.  So Angela showed him how to get his finger over the trach and told him to say something.  He was very soft the first couple of times, but then he yelled out, "Help!"

His nurse, Gary, was right outside the door and he rolled his chair to the opening of the door with this look on his face that said, "what the heck in going on in here?" 

It reminded me of when Derek and Michael were about 4 and 5 years old and I had them in the mall with me.  I was teaching them what to do if they were ever grabbed by a stranger.  We were in the elevator alone, and I had them each practice yelling, "you are not my mommy/daddy."  When the door opened, Derek decided to yell, "You are not my Mommy!" at the top of his lungs.  There stood a security guard.  He reached for his radio.  I took the boys' hands and said, "good job.  That's just what I want you to do if you are ever taken by a stranger.  I walked through the mall, praying I would not feel a tap on my shoulder.
Derek received his PIC line today.  Hopefully he won't have any more line problems, although the two techs who inserted it didn't thrill me.  I watched the procedure to try to keep Derek calm.  It occurred during rounds, so I missed part of rounds.  Rounds or keeping Derek calm?  Easy choice.  I caught up with Dr. Dan and some of the other docs on the floor afterwards and they filled me in.

Our favorite OT Sam came and put on an ugly purple shirt.  She said she looked for the ugliest purple shirt she could find!  We love her!  The shirt is specially made to snap down the sides so it will fit over the IVs for when he finally gets out in his wheelchair.

Our favorite PT was by too, but Derek was too tired to get into the chair.  She worked out his leg a little and left it for another day.  His breathing was just too labored.

The speech therapist Laura was by to work with Derek again and make sure he was still swallowing
The most aggravating part of the day concerned the anesthesia department.  Defensive much?  Someone came by for a post-op visit and asked if everything went okay yesterday, if there were any concerns, and if there was anything I wouldn't want to happen again.  Well, don't ask me a question you don't want answered.  I told her that Derek destatted.  She asked me what I meant by that, so I told her, to which she responded, "Well, how do you know?  Were you there?"  When I explained to her that I had been briefed by the doctors and nurses on his case, she became very condescending in her tone and started to say, "well, ma'am, sometimes in the OR, patients . . ." I cut her off and told her that the doctors did a very good job of explaining what had happened, that she had simply asked me what I did not want to happen again and I told her.  She turned and left.

When they came to get my consent for anesthesia tomorrow, I told the doctor that I wanted them to be aware of what had occurred yesterday and that Derek has a history of sensitivity to the gas, which may have contributed to the issues.  She got her boss who seemed quite upset that the surgeons were blaming anesthesia for the problem.  That wasn't my perception at all.  They actually told me they had no idea what caused the problem, and I told him that.  They did a CT scan, chest x-ray and bronchosocopy, all of which were clear except for the known pneumonia, so they really have no answers except that he had an issue when trying to wake up and we need to watch it in the future.

One of the funniest moments of the day was with Dr. West, who I am still convinced will have me committed before we are through.  He told Dr. Perdue and Dr. Bograd that he showed up on Tuesday afternoon to find me standing in the door with my arms crossed and frowning at him over my glasses.  He stood there imitating me to the laughter of the other two doctors.  It was quite amusing.  *shaking my head* 

He was not in on Monday when Derek was extremely delusional, and we had been looking for him.  He returned to the messages and a very unhappy Mom on Tuesday.  "I picked a bad day to go golfing," he laughed.  But then it was for a TBI fund raiser, so I might be able to forgive him.... eventually.
During rounds this morning they discussed discontinuing the remeron for sleep and putting him back on seroquel.  He had not had as much success on seroquel before.  Dr. West went looking for the team and convinced them that remeron was the right path.  Dan came in and instead of spinning it in a positive way for himself and saying they discussed it and remeron was the way to go, he was honest and said he was wrong and he was going to defer to the expert.  His credibility with me jumped a couple of notches.  I appreciate the honesty.

One of the nurses was passing me today in the hall and he yelled at me, "I heard the great news!" 
I responded, "That we might be moving to the ward?" 
Him - "No!  The other great news?"
Me - *confused look*
Him - "You're awesome!"
Me - *blushes*
*rolling eyes*   The staff is great.  They are not only there for the patients, but for the family as well.

Good night, sleep tight, don't let the nightmares bite!

God bless!

The Cool Kids' Table

 

I walked onto the CCU floor this morning for the start of day 47 and the first thought that struck me was that I knew every one of the nurses and doctors who were on the floor at that time, change of shift (06:45) and I liked every one of them.  That struck me as both heartening and scary.  This is a world of which I never thought I would be part, and one that now that I find myself trying to muddle through, I am grateful for the compassionate doctors, nurses and therapists who have helped guide us and who have treated my son.

I make it a point to be there for rounds every morning.  In the beginning I felt like the nerd trying to get a seat at that cool kids' table in the cafeteria at the highschool.  I stood at the back peeking in and straining to hear what they were saying.  I had to watch for them and sneak into the back of the pack to hear anything.  I didn't understand most of it, and later, I would catch one of the doctors that I knew or I would ask Derek's nurse to explain this to me.  I felt like I was intruding on their secret club.

Also, rounds always started at the far end of the hall and made their way down to Derek's room.  They usually started around 08:30 or 09:00, and they would get to Derek anytime between 10:00 or 10:30, depending on how much they had to discuss and how many other patients were on the floor.  Since the SICU team came over from Walter Reed, this has varied a lot.

But this all changed.  When Dr. Mielky joined the team, he used to explain things to me, and he was wonderful.  And when his rotation ended and Dr. Dan joined the team, he took what Mielky started and enhanced it.

But the entire team has changed.  Not the personnel.  I am now part of the team, as it should be.  If I am sitting in Derek's room, they knock on the door and call me out to join them.  They have been starting at Derek's room at 08:30 and then going down to the far end and making their way around and back up the hallway towards us again.  I seem to be the only family member involved in rounds.

I really do learn a lot, and I hope I am contributing to their assessment.  They ask me questions, and they have made changes to Derek's care as a result of my input.  I am there all the time, and although I know the nurses are excellent, I know my son.  I watch and I know how he reacts to certain things.  Also, his file is so thick by this time that it is not possible for each shift to read everything and to know everything.  It is just easier for me to fill in the blanks on certain things if they are overlooked, such as the sandbags on his leg to keep it straight.  That is something that is so important but that is so easy to be overlooked.  Also, the nurses are not there to do his bedside OT, but Sam said it is important that he work his arms, so Krystina and I can do the OT while the nurses worry about the med stuff.

I really and truly appreciate the respect that the team is showing to me by talking to me and allowing me into their club.  I don't want to step on their toes and I defer to their expertise, but I have observations that might help and it appears as if they are taking them into account.  I just want to be kept completely up-to-date and informed on all matters of Derek's care.  As his mother and the one who has been there for him since he was a little one, that is my right.

The white count when down slightly to 19.8.  Again, white count alone is not indicative of a problem, because it needs to be weighed against so many other things and he has so many infections raging.  No fevers today, so that was good.  There is another infection in his lungs, stenotrophomonas.  This is an environmental infection that is very prevalent in ICUs, and many of us get it, but since we are not compromised, we can fight it.  He is on such broad spectrum antibiotics, they are not putting him on anything else.

The OR was a little scary.  The washout went great, wound vacs were changed, and the skin graft went without a hitch.  The sore on his back was repacked and appears to be healing.  While all the procedures were picture perfect, it was the anesthesia that once again caused concern.

When they moved Derek off of the table, he desatted.  His blood pressure and O2 level dropped.  Over the last several days his secretions had increased, so there are concerns for clots.  They performed a bronchoscopy, but that was clear.  They took a chest x-ray, and that was clear, but it appears that he actually did rip out the central line last night.  He is supposed to get his PIC line tomorrow.

And they are supposed to do a CT scan tonight to check for clots and other problems that might have caused the desatting.  He has had difficulties with the anesthesia in prior surgeries since he arrived, but never to this extent.  After 25 surgeries in 54 days since injury, I think his body is just tired of being knocked out!

Good news is that he seems more lucid, so the medication that caused the delusions is out of his system.  Tonight he is on only remeron for sleep, dilauted for pain and neurontin for phantom pain, plus the various add ins due to the tube feeds (magnesium, etc.), and all those antibiotics.

Even though the tube feeds continue, he passed the swallow study and food is starting slowly, today he had a vanilla milkshake from McDonalds and a parfait (sans fruit).  He is starting!

Angela from RT brought Shirley around to visit - another wounded warrior Mom whose son is on the ward.  Yay!  Finally got to meet her!  Tim is ahead of Derek in his recovery, but hopefully they will meet soon and will be able to help each other through this.

Derek had many visitors today.  Aunt Mary and Uncle Len visited from Florida and they brought along their daughter Cristina and her daughter, adorable little Ava (2 yrs old).  Uncle Len had been here a couple of weeks ago, but Derek looks a lot better now.

Also, army brothers Pleckham, Beckner and Kurtz came for a visit.  All three are in Derek's Platoon.  Beckner and Kurtz are on R&R, and Pleckham is an outpatient here.  Pleckham has visited a couple of times already.  Derek's morale went sky high getting to chat with his army brothers.  We stayed in the day room and let Derek talk smack with the guys.  It was great to see him smile and laugh with the guys the few times I walked by the check on him.  Hey!  I'm a Mom!  I had to check on him!  They were in there for three hours!  I had to get special permission for all three to go in since only two visitors are allowed at a time, and when the three came up, I was told only two at a time.  I went right to Lt. Commander Lopez, the nursing commander and asked him if all three could visit together and he immediately approved it.  What could be better than army brothers?

Learned tonight that entire schools are praying for Derek.  Humbling and heartwarming.  Thank you.  Thank you for taking my son and my family into your hearts and into your lives.  This is such a personal journey.  It is so easy to come out in the beginning and offer support.  But when it drags on, as these things do, most people go back to their lives and forget those of us who have to continue this daily struggle.

After 47 days here and 54 days since injury, we still have so many people offering support, and so many more coming forward with prayers and offers for help.  Thank you.  This is going to be a long journey.  It is so wonderful to have so much support.

That's the story for today.  Good night and God bless!

Delusions

 

Unfortunately, a day off of the medications did not clear up the delusional thoughts.  He actually became worse.  And they are distressing to him.  As much as I tried to keep my face passive, I failed.  Doctors say it might be a couple of days.

Derek demanded that I make him a peanut butter and jelly sandwich.  He told Krystina the sandwich ended up on her head and it was funny.

The helicopter was flying over the bed and he screamed at me to be quiet so he could concentrate.  Then he grabbed it and shoved it under his arm.

He yelled at me for allowing his brother Michael to eat and not him.  He also was angry because I had Michael go into the Navy and not him because I loved him more.  Sibling rivalry.  Gotta love it.  It was alive and well between my sister and me growing up.  If Derek really thinks about it, he knows this is not true since where am I?

I was informed over the night that Derek told his brother Ryan not to eat the whole gun, and that he wanted to help Mel Gibson.  Before I left last night, he wanted to know how many people his nurse killed and how many she had arrested.  Today, he thought his nurse was part of NCIS.  He also told me that down range his troops and the federal agents put each other on pillows and carry each other around.  He yelled at me to get three people in to take off his butt.

I didn't know that I was a grandmother.  He wanted help with the kids - he was the daddy, Krystina was the mommy.  At one point, the kids were playing in the bathroom.

Derek pulled at his wires, tubes and pins all day.  He told me the "big, black guy in charge" told him to.  The funny thing is, that describes one of the men in charge, and Derek has never met him.  He also said that if he got them all out he would get better.  He ripped the stitches out of his central line, but I grabbed his hand before he got the entire thing ripped out!  He did dislodge it, though.

When Master Sgt Bell visited, he knew who she was, and he had a normal conversation with her until he told her that she had to make sure the Washington Redskin cheerleaders kept their clothes on because he had to be focused on Krystina.  But then he also told her that he had a salad from McDonalds that didn't happen.

On the medical front, his white cell count went up a little to 21.3 and he is still tachy.  They added back in the seroquel and added zyprexa to help with the pain and agitation.  They also increased the remeron for sleep.

The best part of the day was passing the swallow study!  Krystina and I watched!  It was amazing to see his throat work from a little camera inserted inside.  The milkshake, pudding and jello were heaven.  But after the swallow study, he told Krystina it was her turn to do it.

Derek also went for a ride around the CCU in his wheelchair!  His first foray out that didn't include a trip to the OR, CT or IR!  Alphabet soup.

Several times during the day, Derek spontaneously said he loved us.

Tonight, he said that he knows who he can really count on, Mom and Krystina, and when Krystina reminded him about Kiki, he said she is always there at home to keep things running so Mom can be here for him.

When we were ready to leave, Derek became very upset that he couldn't walk us down, especially to the place where he had the poptart (didn't happen).  We waited until he was just about asleep to leave, because I couldn't see him upset.  He had had such an upsetting day with the delusional thoughts and questions about things I really did not want to talk to him about.  His mind was whirring and he started questioning us about things I would have rather avoided.  I am not talking about Afghanistan.  He did talk about that, but he also wanted to talk about "family" dynamics.  He has been talking about these family dynamics for two weeks, so it is nothing new to him.  In this state, it was particularly troubling, because I could see it was really on his mind.  I gave one or two words answers and just let him vent.  Krystina and I had talked to him last week when he was lucid and answered his questions, so today we just let him talk.

Unfortunately, people have chosen to dump more stress on us during this time when they should be helping us.  I have already discussed Krystina's orders and how we had to fight to get her on orders when it should have been done voluntarily.  I have also discussed people wanting Krystina to leave Derek.  I do not understand this.  I mentioned once before how Derek had mentioned wanting limited visits, but it seems that Derek is not the only one who is delusional at the present time. 

Notwithstanding that the nursing commander and health care mediator held a meeting to discuss DEREK'S wishes, I was told today that when Derek can speak for himself, the person who is the focus of Derek's desire for the limited visit will listen.  Derek HAS spoken.  Derek spoke to Dr. West, the nurses, the social worker, casuality affairs and Master Sgt Bell about his wishes.  I believe that is speaking for himself is it not?  What else does he need to do?  How much more stress does he need to put on this boy who was blown up by an IED?  Why won't he respect this kid's wishes and back the heck off?  He wanted to know what Derek wanted for this weekend and Derek wanted one day.  In his present state, someone who has been out of his life and has not been a good influence shouldn't even be here!  He didn't believe that Derek said that.  So he is not coming this weekend, but that could be because his request for lodging was denied, but I can never be 100% sure of that.  That is just my opinion.

I have really tried to stay away from this personal drama, but it has permeated my soul and given that we have been in CCU 46 days, and Derek has had two really bad days, I am at the end of my rope.  I have not slept, and I have not had time to eat, except a couple of bites on the run, because we really need "eyes on" at all times.  I will be up at 05:30 tomorrow to get back to the hospital, and it is already almost 23:30
I did not need to deal with a delusional jerk today who really thinks he has done nothing wrong while trying to deal with Derek ripping at his tubes and wires and trying to keep him from hurting himself!  Go crawl back under the rock you have been under for the last 13 years.  Unless you are going to start supporting your children and start being a real father, we do not need you.  I tried to be nice, but if Derek's wishes are not going to be respected, then stay away.

Sorry for the rant tonight.  Needed to vent.  I cannot expect someone who ran out 13 years ago to be supportive now.  Like I said once before, I live on Hope Island.  I constantly hope that people will rise to the occasion and do the right thing, but then I am disappointed.  I hold people to the highest standard.  When they do not rise to the occasion, I get disappointed.  Where my children are concerned, you do not get a second chance.

Failing the Standardized Test for Pooping and Peeing

 

Apparently there is a standardized test for pooping and peeing and Derek failed miserably.  He also learned to walk 13 years ago.  Yes, his math sucks.  And, the Mexicans are in the air and the Indians are supposed to help them.  Don't you see them?  I was supposed to have seen them, too.

I told that story to my friend Minnie whose husband is in CCU and who is Mexican and she told me to bring her in to Derek's room to show him that we saved her!  She was hoping that it would help Derek.

They changed his pain medications on Saturday.  After sleeping all day on Saturday and Sunday, he awoke this morning in full fledged delirium. 

Tonight, Krystina and I are exhausted.  We did not stop for a minute all day.  We could not take a break except to grab a quick bite to eat or a fast bathroom break.  It was "eyes on" with the nurse.  It was a two person job all day due to his active hands pulling on things and telling crazy stories.

This morning Derek told me the story of Dr. Perdue telling the kids on the night shift to turn the music down because all of the patients deserve respect.  He also was convinced that Krystina and I had to help him one night move all of his stuff from one room to another due to a black out.  He was oriented as to where he was, but thought things had happened that didn't.

Until he asked for his tan shirt and hat for formation.  After surgery, he asked the nurse if they had caught up to the platoon.

Derek wanted to know if my gun was hidden under my seat in my car.  I don't own a gun.  I never have.  He asked us many times if we cleaned the guns and if they were ready.

He was quite distressed about failing that standardized test for pooping and peeing.  I wasn't aware that there was one.  He said he passed it 13 years ago, when he learned to pee and poop on his own.  He also said it was the same time he learned to walk.  Yes, his math sucks.  Derek got through high school with a pen, a smile and his charm.  Which also explains why his spelling is so bad.

He wanted me to explain to the nurse about keeping the bicycles straight.  I tried to play along, but when I didn't explain it to the nurse, I finally had to tell him I wasn't aware of any bicycles and he became very upset and pointed at his leg and yelled, " the bicycles and the sandbags, mom!"  I got it.  We have to keep his leg straight by using sandbags because the muscles have started to constrict.

Derek told me that one of the wounds was hurting, but I explained that they took care of it in surgery, and that it was a blast wound.  He wanted to know if he should put neosporin on it.

Because the meds seem to be interacting with one another and causing havoc in his body, they removed all pain and sleep meds but the diluated (actual pain) and nuerontin (to block the phantom pain).  They decided to add one sleep med tonight (remeron) and will slowly add some meds back over the next couple of days to see what the trigger was for the delirium.  They think they know which one it was, but they want to make sure.  Dr. Dan felt terrible that the meds wreaked such havoc on his system and pinky promised me that he would get to the bottom of the problem. 

I do trust Dan.  He has been wonderful, and he promised we would all sit (his wife included) and have a beer at the "Humping Turtle" [after we "feed the peter (meter)"] when this is over.  It is actually the "Harp and Fiddle," but in my sleep deprived brain, I messed up the name.

Needless to say, graduation has been delayed.  If we will lose Dan, I don't know if I mind the delay.  I don't know if I want a new team of doctors and nurses.  I like the ones Derek has now.  Can I bring them with me?

But the good news is that surgery went better than good.  When I returned to the room at nine to wait for rounds, they were returning Derek from surgery!  The wound vacs were changed, arm was washed out, blast wounds (especially that one nasty ulcer on his butt) were debreaded and repacked, and the skin graft on one wound is scheduled for Wednesday if all continues to go well and if the white cell count gets its act together!

The white cell count went up slightly to 16.6 and Derek ran a slight temp of 100.1, but they attribute the temp to the OR and are trying to say the white cell could be nothing.  Not buying it until it goes back down, but I'm really more concerned about the medication problem.  Those pain docs better stop messing with this!

Our favorite OT, Sam, came by today and got Derek into his chair.  SO good to see him out of bed and Sam is always so upbeat and positive.  PT Mary Jean was also by and worked that leg.  She's a sweatheart, too.
Even though Derek was delirious, he had lucid moments when he was asking questions and wanting to know what was going on with the world, his family, etc.  He asked about his Papa, his brothers and sister, cousins, Kiki, Uncle Brian, and Krystina's family.  He asked to speak with his brother Mike on the phone, so we called him.  He also asked a lot about what has been happening since he was admitted.  Krystina did not hold back.  I tend to protect, but Derek and Krystina are brutally honest with one another, as they should be.  He wanted to know, and she told him.

We asked him what he remembered about the incident, in the way that Dr. West advised us to do.   He does not remember anything from three days prior to the event.  Dr. West gave us specific instructions as to what to say to him, and we are following his guidelines to help him remember the incident, hopefully without triggering a PTS event.  Only time with tell if we are successful.

Thankfully Derek has a nurse I trust tonight.  I've trusted most of them, but not knowing them when they first come on, I need to stay later until I get into that comfort zone.  Not the case tonight.  She is one from his first week at Bethesda, LTJG Priscilla Furher, so we were able to leave early.  It was a hectic and emotionally trying day. 

I am emotionally spent from seeing him upset, confused and in pain.  He could tell when he started getting off track.  Although I tried to keep my face passive, when I was unable to follow his story, or when Krystina would tell him that it was just a dream, he would back peddle and either say he was only joking, beg Krystina not to tell me, or try to laugh it off as a joke.  This was a rough day on everyone.

I am hopeful that we will be able to crash early tonight and start over tomorrow fresh.  Hopefully swallow study tomorrow!

A Day of Remembrance, Hope and Moving Forward

 

Ten years ago our nation faced a horrible tragedy.  Almost 3,000 people lost their lives in one of the worst terrorist attacks on American soil.  Unfortunately, a family who is near and dear to my family was struck by that tragedy. 

Kevin James Hannaford, Sr. was in the North Tower when the first plane hit.  Eileen, his wife and a friend of mine from the Jimmy and Pat Friel School of Irish Step Dancing since I wa 9 years old was pregnant with their second child, Kevin, Jr.  Their son Patrick was two years old at the time.  I danced with Eileen and her brother Patrick for about 11 years.  Her mother, Mary McGinley was best friends with my mother, Noeline Fuller and my grandmother, Rosemary Delaney.

My love, heart and prayers are with the Hannaford/McGinley familes and all of the families and friends who were affected by this tragedy ten years ago today.

It is from this event that we are now involved in this war and from which I am now sitting in Bethesda, Maryland instead of at home in Parsippany, New Jersey.  Since this is not a political commentary, I will not discuss my own feelings and politcal beliefs about the war here.  Anyone who knows me personally or who is my friend on facebook is aware of where I stand on these issues. 

I will only say that I am proud of the son that I raised.  I am proud of the man that he has become.  He knew the risks that he was assuming when he enlisted during a time of war, and he freely and voluntarily put himself at risk so that we may live in a free country.  I raised a brave, strong and wonderful man.
Unfortunately, he is also a little boy who is fed up, ticked off and done.  Tonight he asked me to please sneak him in a candy bar.  I told him I would but it would choke him to death, so I could not.  Being a parent is hard sometimes.  I had to tell him "no."  I had to explain to him that he could aspirate and die because he cannot yet swallow, but that the swallow test is coming tomorrow or Tuesday.  All day he begged for peanut butter and jelly, orange juice and cereal.  It's heartbreaking.

On Sundays, the Marine Moms and other organizations come around and offer us lunch on the med/surg floor.  Today they had smoothies, fried chicken, meatballs, hot dogs, etc.  I felt so guilty going, but Krystina and I need to keep up our strength in order to give Derek the best care.  We were also able to get a massage.  That was heaven, especially since my shoulder is still hurting from Derek pulling me across the bed.

During rounds this morning, I was informed that Derek might be ready to graduate this week!  Could it be true?  He is still tachy, has a lot of infections, the J tube is giving him trouble, and I am concerned that he needed suctioning an increased amount today (trach size is still an 8 - has not been reduced). 

He has also slept for two days straight.  Until yesterday he had normal wake/sleep cycles.  I think the increase in the pain meds had an adverse effect on him and intend to discuss it during rounds tomorrow.
The J-tube has been a problem since insertion.  It causes him pain, often clogs, and makes him vomit if pushed too hard.  His tube feedings were turned off for the day because it was clogged.  They took an x-ray that did not show a problem, so they don't have any answers.

White cell count is down a little to 15 and there is no fever, although he was acting feverish - sweating, hot and flushed.

I gave Derek a shave today.  My first time ever shaving a man.  I'm not saying it was a good shave, but it passed a civilian test.  Won't pass military grade.

A concerning event was while the three of us were napping, Krystina and me in those "comfortable" chairs, Derek pulled his oxygen tube off and was starting to pull his trach from around his neck and was freaking out as to why there were two around his neck.  Thankfully Krystina jumped up and took care of it.  This is a concern because we are not with him all night, and if he graduates out of the ICU, the patient to nurse ratio is reduced.

We are still waiting on final word on the abscesses.  They are thinking they will probably resolve themselves, but they are still watching them.  I hate not knowing for sure.
 
Too many teams, too many doctors, too much balancing.  I think they are all working for the best for Derek, but they are playing a balancing game and if just ONE drops his side, the whole tower of cards will topple!  Derek is NOT out of the woods, and there is still a chance that he could go septic again.  All systems are working, although not all working correctly, and the numbers look okay, but because he went septic once, there is always a chance that he could go again.  He is still in a tenuous position.  It will be months before they clear him completely.  Krystina and I are in for a long, hard road.