Don't know what sort of entry this will be tonight. I was up at 05:30 for Surgery 22, after having not slept very well. It was a busy day with surgery, appointments, procedures, etc. Now it is 21:25 and I have just gotten to our room at the Fisher House after Derek's CT scan. The contrast backed up into the G-drain after being inserted into the J-tube, so he had to be given more. Instead of the CT at 19:30, he didn't go in til 21:30. But when he got back, he was taken off the vent and put back on the trach collar.
No results, yet. I want them now, which I was told was a Jersey Affliction - I want it, I want it now, and I will not wait. After 40 days in the SICU (which was called the CCU when it was NNMC), I am done with waiting. Sometimes I feel like we will never get these infections under control. They are playing and winning a major game of hide and seek! Call in SEAL Team 6! After all, they got Osama.
Last night's nurse misspoke when she said the white cell count went up in the afternoon. It was not done. This morning it was down a little more to 16.9, but his platelet count was also down, causing some discourse between the various doctors as to whether the white cell count dropping was actually a false read due to the corresponding drop in platelets. At this point, I don't care. Fix him.
They decided to go ahead with the CT scan that they were supposed to do on Monday but held off on, because of the fevers. The fevers went down overnight. At first they were 100.8 at 00:00, then back up to 101.5 at 02:00. He hovered around 99 all day until 15:30 when it rose to 101.2. They nixed the Tylenol order unless he gets extemely uncomfortable because they felt they were masking an extremely valuable diagnostic tool and wanted to let the fever play itself out.
Derek's heartrate is hovering between 108 and 135, and he is still tacycardic. They attribute it to the infections and trauma, and are watching the heart carefully.
Since all the wound vacs had come down in volume, in the OR today they were switched to incisional vacs, which means the wounds are closed. All but one. Those wounds on his backside are still giving him problems.
The new bed arrived. Wow. Gyrating, pulsing sand that warms and cools. Derek said it was heaven. Let's hope it heals that butt, because we are sick and tired of his butt hurting! I don't want to hear him call out, "my butt!" ever again!
Those dreams still plague him and they are troubling him. He told me he has good ones and bad ones, and he does not like it.
I sat holding his hand today while reading my Kindle. Next thing I knew he had pulled me across him and I was jammed into the siderails. I yelled out to him as he started pulling at his various tubes and wires, and he woke with a start. He told me he dreamed they locked the room down and he had to pull everything out to get away. During the night, he ripped things off and the nurse had to come running in. I warned her to watch him. I warned tonight's nurse, too.
The morning rounds (they usually pass Derek's room at 09:30, was surprised to hear about the ripping off incident since it was not reported to the doctors. I try to be present for all rounds, and it is becoming increasingly more evident as to why it is important. Forget the pulling incident, there are just things the nurses do not know that they ask me about. It helps them treat him and address all of his needs.
I am left to wonder what happens to those wounded warriors who have no one.
While sitting at his bedside, Krystina on one side and me on the other, Derek looked at me and asked for a hug. Derek has x-fixes in his pelvis, a healing scar on his abdomen, is on droplet protection and contact precautions. Hugging him is not in his best interest. Someone lay across him several weeks ago to hug him while he was semi-conscious and his abdomen was still open and it caused Derek to jerk and convulse, according to the nurses, because I was not in the room. The nurses wanted to remove this person and not allow her in the room again. I asked them to please not do that and simply watch carefully that all contact be appropriate for Derek's well being.
Now what to do when Derek is giving me the lip and holding out his arms? I put my hands on his shoulders and leaned towards him. He put his arms on my back, and he felt better.
Then he asked Krystina. My little, petite, tiny Krystina who can barely see over the side of the bed. She told him she couldn't without lying on top of him and hurting him. He said, "get a stool." He caressed her hair and smiled when she stood on the stool and mimicked my "hug."
The best laugh of the day came with the day nurse, Peter. Love that guy. He has these dancing eyes and is always bopping his head to whatever beat he hears inside his own ears.
Krystina was standing at the bedside and he said in a little sing songy voice, with just the right touch of sarcasm, "you know we have a stool you could use" and flashed a big cheesy grin. He then bopped away. Krystina turned her back and muttered, "asshole." He popped back into the doorway and yelled, "BUSTED! Caught by the teacher!" Her face turned the deepest shade of red as we all burst out laughing!
Doc Ryan Pleckham visited today. He was injured a short time before Derek, but not as severely. What a nice guy. He raised Derek's spirits, even when he looked at the mint Power Ranger action figure and said, "40 year old virgin stuff." It was good to see Derek alert and interacting with a buddy.
And Derek took the steps towards getting Krystina on orders. He called for the meeting to cancel Kevin's orders and open Krystina's orders. There is a sixty day waiting period, so it would have been nice if this could have taken place earlier without having to wait until Derek was well enough to realize that she was not on orders and to call for the meeting himself, but the right thing was not done until Derek called for it. I've been taking care of as much of her needs as I can, and her parents are awesome and sending her support, but what happens when I leave? She will have no where to stay. It shouldn't have taken 40 days to get this done. That is 100 days, three months of this wonderful, young woman caring for her man, paying out of her own pocket when she could have been getting assistance. She hasn't complained once. It was Derek who was quite upset when he heard she was not on orders.
So another day down. No internet access in the SICU, so I cannot even get some work done on my laptop. Cell phone service is sketchy at best. With all of the doctors consulting with me all day, various department meetings and simply caring for Derek's constant needs, Krystina and I do not get a break except the shift work when we need to run to get something to eat or do laundry. Sitting by his bedside, holding his hand, reading from my Kindle is the biggest break I get.
I am not complaining. I would not and could not be anywhere else right now. This is what it is to be a parent. You do whatever you have to do to take care of your children. I do feel I am neglecting my other three at home, but I cannot be in two places at once, and my sister, father and son Michael are caring for them and making sure that they are okay. They are also 17 year old twins and 14, so they can pitch in and help.
The pressure of caring for Derek's needs, worrying about missing Sean's first day of high school, Ryan's first day as a Junior and Kellina's first day as a Senior, not being home to attend to the menagerie and make sure the house is kept clean, refrigerator full, bills paid, etc. is overwhelming. I can do it. I know I can. But late at night, sometimes in the middle of the night when I cannot sleep, this weighs on me. Sometimes the gravity of Derek's injuries, and the fact that he is still not out of the woods after SO many doctors, SO many tests, 22 surgeries, 40 days in SICU is enough to bring me to my knees from the weight of it all.
But do not mess with my kids. Because I can carry this weight and more for them. I've stood by them as a single Mom for 12 years with the support of my parents, sister, brother-in-law, and a myriad of awesome friends in the wings. If fighting this battle, the lack of sleep, the worry, etc means that my children will be safe, happy, secure and healthy, I wound fight the entire Taliban with my bare hands to ensure that and more for them. What real parent wouldn't?
I will leave you with the thought..... take time today to list five people or things for which you are truly thankful. List those five people or things that are the nearest and dearest to your heart. Now, the bills will keep, the dust will be there tomorrow, the file can be worked on later.... go take a few hours and immerse yourself in what truly makes you thankful to be alive. As they say - stop and smell the roses. Don't stress over the little things. It all can change with a phone call.
Don't have any regrets that you were too consumed with work, spent more time on your own, selfish needs, your lawn, your chores and neglected those around you who would have benefitted from an hour of throwing a ball, reading a book, talking to you on the phone, or whatever other thing in your life gives you meaning, even if it is not a particular person.
If you are the one caring for a sick loved one, call a friend, relative, loved one to take an hour or two shift so you can get some mental health time. That would not count as "own, selfish needs," because you are already devoting yourself to someone. And they will be better off when you return refreshed. When you return after having taken care of one of those other things on your list, you will be a better caregiver. Krsytina and I found that out when the Yellow Ribbon Fund treated us to mani/pedis. We are hoping for the massages next time around!
Have a good night. Peace, love and blessings.
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