Unpredictability

What a Week!

Here is my Thursday update from Facebook. It covers most of the basics.

Update for 7/28/16 *long*: As of right now we do not know when Joe will be discharged. Every day I hope that he will tell me that they are sending him home. It still could be today, but somehow I doubt it. He came to the ED Saturday for weakness. Was transferred from Lahey Peabody to Lahey Burlington ED and admitted that night. Turns out he was in the beginning of DKA. He could barely stand or walk, very unsteady, grouchy, throwing up, just miserable. Sunday they put him on an insulin pump. All day and night Sunday the staff was in an out checking sugars and adjusting the pump. That was a long night. Monday they took him off the pump and he seemed a little better but overall very weak. They did not get his Reglan and Dexamethasone sorted quickly enough so he was still getting sick. He takes those continuously for GI motility and they always put them as needed so he forgets to ask. He also has lymphorrhea, which is leakage or fluid, from both of his legs. And his dressings needed to be changed. That began a whole new level of issues trying to keep the staff on top of that because he leaks so much that the dressings have to be replaced frequently. Monday night his blood sugars were elevated and I had to fight with the on call doctor to give him insulin because they were afraid of him dropping, so he was under treated. Then Tuesday night his sugars plummeted because they over treated his sugars. Wednesday was a better day. He has not been on TPN since admission and since Monday has been eating and drinking well. He has an amazing appetite. Grateful. They have him on calorie counts to see if he can stay off of TPN when he goes home. He is being treated for an unconfirmed blood infection. They think that the infection may be just inside one or more of the lumens on his PICC because that is the only site they could get his blood from. They tried sticking him no less than 4 other times to get blood cultures from uncontaminated blood but he is a hard stick and he they were unsuccessful so he said no more. IV antibiotics in case and indwelling PICC antibiotics in case it is just there. Latest development was a bloody nose. He has had them intermittently. Last night around 10pm he got one that is constantly seeping and won’t clot. So they have to address that today. He is still rather weak. If he does more than go to the bathroom it depletes his energy reserves for the rest of the day. And while he is here, I go home for shower, clothes, and to check the hammies, but I live at the hospital with him when not working. Hate seeing him so miserable. I think that covers everything current. Praying he gets better soon for chemo next week. Not going to be good if that gets delayed again. So, fingers crossed and ever hopeful. Thank you everyone who always has us in mind. I feel loved and supported every day by so many different people. We will get through this.

Beyond all that…

His mother wound up reprimanding the wound care nurse when she visited. The lady was trying to tell the floor nurses how to wrap Joe’s legs without even coming to see him. She stayed outside of the room. Never came in from what I was told. So dear MIL made them call her back and she pretty much tore in to her for not doing her job and having no interest in her job. After that, the care of his legs became much more appropriate.

I do not think they ever confirmed a blood infection. They did confirm that his PICC was infected. Part of the antibiotics in the hospital were mixed with Heparin and instilled into his PICC to be left indwelling for a time then removed. Well, something got crossed somewhere because that Heparin was making it in to his body. That was the cause of the nosebleed! His oncologist was not happy and wrote up an incident report. He tries so hard to take care of Joe well.

They pulled his triple lumen PICC that was infected from his right arm. The inserted a new double lumen PICC into his left arm. He is supposed to be on IV antibiotics by a pump for 11 more days. I am not sure how that is going to go over with him when he wants to work. On the topic of work though, he is rebuilding his strength. Most physical activity tires him very quickly right now. He is struggling to understand why he is not getting stronger.

The DKA was resolved in the hospital. I am trying to help him keep better monitor of his sugars at home. Dressing his legs is a workout! It has been less than a day being home, and so far, he is being so co-operative. Hoping it continues. I think it helps that I just don’t question him. I remind him when I am doing with his care. I make sure he is ready for me to help him and try very hard to pay attention to what he is asking. Sometimes what I think he is asking is way off the mark, usually because his terminology for some things has altered, so I have to learn to read in to what he says.

He should be back in business this week with going to wound care for leg wrapping. Chemo should be on Wednesday.

Best news is that he is currently off of the TPN. We are counting calories, protein, and carbohydrates. I am also trying to monitor his weight. If all goes well, he will be off of the TPN for a while. He has been eating pretty normally, and has a good appetite.

Deep Breath

I am sincerely hoping for another few months before anything major happens with him. I just want him to feel as normal as possible. I  think the only upcoming major change is going to be that he will probably shave his head. We realized today that he is slowly starting to look patchy from hair loss. I want him being bald to be at least partially his choice.

So, while we have other important things happening in life right now, too, I am keeping this post centered on his status. Updates to come later. Thank you, Readers, for your patience with my blogging lapse!

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