On the heels of that moment of silence, I think we all need a little levity. Life goes on, thank God, and this is the rollar coaster ride of this God forsaken war. I have seen so much tragedy, heartache, hope, milestones, gut wrenching decisions, set backs, steps forward, plunges into darkness and family drama to last a lifetime, and only in the last 42 days!
Back in the safe bubble of New Jersey, although I knew this war was going on, and although I was a nervous wreck with two kids in the military and one deploying to afoolistan where he would live in mortal danger every minute of the day, I could still go about my daily life in virtual ignorance. After all, most of the country is insulated from the real tragedies of this war.
Today was an overall great day, with the exception of the bad news when I returned to check my email.
Since 9/11 is this weekend, the hospital had a memorial blood drive. That scares me. I always said I could never do that, but I had been toying with the idea since arriving in Bethesda and seeing the need. However, since just having a blood test freaks me out and I almost pass out, I was hesitant. I did say that if any of my children ever needed blood, I could do it. I felt that this was, in a way, for my children, since it was helping the troops. I am A-, and they were excited to get my blood and said it would probably head to Afghan very soon since they are in such need for negative blood. Although I was a little freaked, it felt good to be helping. The worst part was letting a 21 year old near me with that needle. It was like allowing Derek to do it. Scary.
I donated in the name of the Hannaford/McGinley family who lost a loved one on 9/11/01 in the WTC and for all of our troops. May we never forget.
Now I have two sore arms.... the one from donating and the one from when Derek wrenched me across the bed during one of his dreams! LOL! My shoulder is still aching from that!
This morning Derek had another surgery. Simple washout procedure of the arm and incision check, but it took a couple of hours.
During rounds, Dr. West got a shout out! Dr. Dan said, "here's to neuropsyche who thought to change his meds and Derek got the best rest yet since he arrived." When I told this to Dr. West, he said he must be a better doctor then he thought. He said that unfortunately, this is the "witch doctor" part of the practice - tweaking the meds until the right combo is found that works with each individual patient. I like Dr. West and kudos go to him today for Derek FINALLY getting a good night's sleep! I am still convinced he will have me committed before this is over, but until then....
I was present for rounds again today. The best advice I can offer any new family facing this is be there for rounds. You learn so much. Get to know your doctors and nurses. They are YOUR team. Ask questions. Don't be afraid to ask questions about whatever you don't understand.
Derek's white count was down a little to 16.6, and the fever was hovering between 99 and 100.8. It's still those infections. Derek said he has them half way beat, and he will do it.
They decided to take off some of Derek's meds, mostly the ones to help is gut work, since it is doing just fine.
I was told during rounds that Derek will be in the ICU until he is able to tolerate the trach collar for a long while. He needs to be completely off the vent/pressure support. He was put back on the trach collar today at 13:00. Shortly thereafter, Laura from Speech Pathology came to work with him and give him his passy muir valve. The first time they tried it a couple of weeks ago, he couldn't handle it. He coughed and it flew across the room!
As for those stupid abscesses, the radiology team came back that they want to do an ultrasound to determine if they are more mucus that fluid. If they are mucus they will not be able to drain them. The ultrasound will take place sometime this weekend. I met up with Dr. Perdue downstairs and that news had not yet filtered down to him, so I told him. He said that I was more informed that him! Not really, I had just gotten the information first. If felt good to be able to communicate intelligently with the doctors. There is the positive effect of attending rounds!
Since the families are such an important part of the process, we NEED to be informed. Walking in this morning, I overhead a part of the change of shift I had never heard before or even knew about. Apparently, the nurses advise each other about the families and whether or not they are easy to deal with. The one I overheard was, "the wife is good, but the mother can be a little overbearing." I have been told by the nurses that I am very helpful, so I hope that this is what is being passed on, but you never know.... ;-)
After surgery, Derek typed out on the board - "what time does Kays close?" He was wondering about the jewelry store. Gee, what could he have on his mind?
The best part of the day was finally hearing Derek speak! Love that passy muir valve! Krystina and I were taught how to put it on and take it off, because he is not allowed to sleep with it on. We celebrate the little things now, and this was huge to us! The first thing Laura had Derek say was Krystina's name! Then he said my name! Music to our ears.
After that, there was no stopping him.
"I can talk. Man. This is so awesome."
He asked to speak with his aunt Kiki, Krystina's parents, her aunt Angela, and his Uncle Brian. It was wonderful to see him talking on the phone!
He said over and over how much he loves us.
"Mom.... Mom.... Mom... (he was talking to Krystina so I was leaving them alone and reading, so I was not really paying attention. I finally looked up.) Hi!"
D to K - "I love you so much, baby. Only you would sit here for hours giving me drinks. I could go on for hours. I want to marry you."
K - "you know you're stuck with me?" D - "no, I'm not stuck with you. I'm exactly where I want to be."
He kept calling me "Mommy." When Krystina asked him about it, he said he liked it and would do it from now on.
He thanked us for being there for him. He said he couldn't believe we gave up so much and so much time to be with him. We asked him if he knew how much we loved him, and he said he never imagined this much.
He wanted to see the pictures I had taken of his progress. He was amazed by how bad he looked in the beginning, how he started to progress, how he crashed when he went septic, and how good he looks now.
I showed him a picture of him with Dr. Ugo (the one who went to Fort Belvoir). D - "I let him out." Me - "What? From where?" D - "The basement. You chained him there." Oh! I had threatened Dr. Ugo while he was in Derek's room that I would chain him in the basement and only let him out to treat Derek! I asked him if he had dreamed that, and he slapped his head and said, "Yes." Dr. West said it was probably a ketamin induced hallucination brought on by what he heard. It was hysterical and I would love to get that message to Dr. Ugo!
When a machine started beeping - "Nurse! That shit's annoying!"
Laura asked him about his injuries, and he said he lost his legs, "fuck it."
Laura asked him about his duty station. "I was stationed at Fort Drum. It's cold. It's pretty fucked up there. They have to get their shit together."
Dr. West showed up at the door. I jumped around and almost screamed at him, "he's talking!!!" Dr. West asked if he should go away and not ruin it. I yelled while jumping up and down, "No! Get your butt in here!" Yes, he will commit me. He is the neuropsychiatrist.
Derek said he really wished he could get Krystina a ring. I said it didn't matter what was on her finger, it was what was in his heart. Derek said with all his Derek 'tude and wide eyes, "Well, tell HER that!" To which Krystina responded, "Shut up, Derek." They are adorable together! They banter and play.
Derek said he did not care about his legs. He said they make prosthetics. He was going to ask them to round him off to 5'8". Better than the three feet he is now! And don't even look at me like that! It's that sick sense of humor of mine that is getting me through this. And that makes Derek laugh. He has an awesome attitude about it. I said to him today - "I finally have a kid shorter than me again" and he responded - "not for long."
We had a good day with Derek, with him laughing at us and joking with us. He is still very sick and not yet out of the woods, but these little advances show us that there is light at the end of the tunnel.
Climb to glory, Solider! To the top! All the way!
Back in the safe bubble of New Jersey, although I knew this war was going on, and although I was a nervous wreck with two kids in the military and one deploying to afoolistan where he would live in mortal danger every minute of the day, I could still go about my daily life in virtual ignorance. After all, most of the country is insulated from the real tragedies of this war.
Today was an overall great day, with the exception of the bad news when I returned to check my email.
Since 9/11 is this weekend, the hospital had a memorial blood drive. That scares me. I always said I could never do that, but I had been toying with the idea since arriving in Bethesda and seeing the need. However, since just having a blood test freaks me out and I almost pass out, I was hesitant. I did say that if any of my children ever needed blood, I could do it. I felt that this was, in a way, for my children, since it was helping the troops. I am A-, and they were excited to get my blood and said it would probably head to Afghan very soon since they are in such need for negative blood. Although I was a little freaked, it felt good to be helping. The worst part was letting a 21 year old near me with that needle. It was like allowing Derek to do it. Scary.
I donated in the name of the Hannaford/McGinley family who lost a loved one on 9/11/01 in the WTC and for all of our troops. May we never forget.
Now I have two sore arms.... the one from donating and the one from when Derek wrenched me across the bed during one of his dreams! LOL! My shoulder is still aching from that!
This morning Derek had another surgery. Simple washout procedure of the arm and incision check, but it took a couple of hours.
During rounds, Dr. West got a shout out! Dr. Dan said, "here's to neuropsyche who thought to change his meds and Derek got the best rest yet since he arrived." When I told this to Dr. West, he said he must be a better doctor then he thought. He said that unfortunately, this is the "witch doctor" part of the practice - tweaking the meds until the right combo is found that works with each individual patient. I like Dr. West and kudos go to him today for Derek FINALLY getting a good night's sleep! I am still convinced he will have me committed before this is over, but until then....
I was present for rounds again today. The best advice I can offer any new family facing this is be there for rounds. You learn so much. Get to know your doctors and nurses. They are YOUR team. Ask questions. Don't be afraid to ask questions about whatever you don't understand.
Derek's white count was down a little to 16.6, and the fever was hovering between 99 and 100.8. It's still those infections. Derek said he has them half way beat, and he will do it.
They decided to take off some of Derek's meds, mostly the ones to help is gut work, since it is doing just fine.
I was told during rounds that Derek will be in the ICU until he is able to tolerate the trach collar for a long while. He needs to be completely off the vent/pressure support. He was put back on the trach collar today at 13:00. Shortly thereafter, Laura from Speech Pathology came to work with him and give him his passy muir valve. The first time they tried it a couple of weeks ago, he couldn't handle it. He coughed and it flew across the room!
As for those stupid abscesses, the radiology team came back that they want to do an ultrasound to determine if they are more mucus that fluid. If they are mucus they will not be able to drain them. The ultrasound will take place sometime this weekend. I met up with Dr. Perdue downstairs and that news had not yet filtered down to him, so I told him. He said that I was more informed that him! Not really, I had just gotten the information first. If felt good to be able to communicate intelligently with the doctors. There is the positive effect of attending rounds!
Since the families are such an important part of the process, we NEED to be informed. Walking in this morning, I overhead a part of the change of shift I had never heard before or even knew about. Apparently, the nurses advise each other about the families and whether or not they are easy to deal with. The one I overheard was, "the wife is good, but the mother can be a little overbearing." I have been told by the nurses that I am very helpful, so I hope that this is what is being passed on, but you never know.... ;-)
After surgery, Derek typed out on the board - "what time does Kays close?" He was wondering about the jewelry store. Gee, what could he have on his mind?
The best part of the day was finally hearing Derek speak! Love that passy muir valve! Krystina and I were taught how to put it on and take it off, because he is not allowed to sleep with it on. We celebrate the little things now, and this was huge to us! The first thing Laura had Derek say was Krystina's name! Then he said my name! Music to our ears.
After that, there was no stopping him.
"I can talk. Man. This is so awesome."
He asked to speak with his aunt Kiki, Krystina's parents, her aunt Angela, and his Uncle Brian. It was wonderful to see him talking on the phone!
He said over and over how much he loves us.
"Mom.... Mom.... Mom... (he was talking to Krystina so I was leaving them alone and reading, so I was not really paying attention. I finally looked up.) Hi!"
D to K - "I love you so much, baby. Only you would sit here for hours giving me drinks. I could go on for hours. I want to marry you."
K - "you know you're stuck with me?" D - "no, I'm not stuck with you. I'm exactly where I want to be."
He kept calling me "Mommy." When Krystina asked him about it, he said he liked it and would do it from now on.
He thanked us for being there for him. He said he couldn't believe we gave up so much and so much time to be with him. We asked him if he knew how much we loved him, and he said he never imagined this much.
He wanted to see the pictures I had taken of his progress. He was amazed by how bad he looked in the beginning, how he started to progress, how he crashed when he went septic, and how good he looks now.
I showed him a picture of him with Dr. Ugo (the one who went to Fort Belvoir). D - "I let him out." Me - "What? From where?" D - "The basement. You chained him there." Oh! I had threatened Dr. Ugo while he was in Derek's room that I would chain him in the basement and only let him out to treat Derek! I asked him if he had dreamed that, and he slapped his head and said, "Yes." Dr. West said it was probably a ketamin induced hallucination brought on by what he heard. It was hysterical and I would love to get that message to Dr. Ugo!
When a machine started beeping - "Nurse! That shit's annoying!"
Laura asked him about his injuries, and he said he lost his legs, "fuck it."
Laura asked him about his duty station. "I was stationed at Fort Drum. It's cold. It's pretty fucked up there. They have to get their shit together."
Dr. West showed up at the door. I jumped around and almost screamed at him, "he's talking!!!" Dr. West asked if he should go away and not ruin it. I yelled while jumping up and down, "No! Get your butt in here!" Yes, he will commit me. He is the neuropsychiatrist.
Derek said he really wished he could get Krystina a ring. I said it didn't matter what was on her finger, it was what was in his heart. Derek said with all his Derek 'tude and wide eyes, "Well, tell HER that!" To which Krystina responded, "Shut up, Derek." They are adorable together! They banter and play.
Derek said he did not care about his legs. He said they make prosthetics. He was going to ask them to round him off to 5'8". Better than the three feet he is now! And don't even look at me like that! It's that sick sense of humor of mine that is getting me through this. And that makes Derek laugh. He has an awesome attitude about it. I said to him today - "I finally have a kid shorter than me again" and he responded - "not for long."
We had a good day with Derek, with him laughing at us and joking with us. He is still very sick and not yet out of the woods, but these little advances show us that there is light at the end of the tunnel.
Climb to glory, Solider! To the top! All the way!
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