Thursday, January 22, 2015

A video of Jude's high tone last night

Well as I mentioned Jude had a decent day yesterday but about 5:40 that changed. He was becoming very toned out and it looked painful so Charlotte gave him some Motrin and when that didn't work she gave him Ativan. When I got home she mentioned that he might need Morphine because the tone was still there. We weren't sure if the tone was being caused from the change in TX weather or if it was a reaction to not feeling well. So I did end up having to give him the Morphine and Jude still was not doing well.

I sent this video to Hospice so they could understand what we are dealing with when we cannot get his tone under control. His heart rate was at 176 and his O2 kept falling. They decided to increase the dose of ativan and soon Jude was more under control. He was calm for several hours and then we all went to sleep. Jude had his evening meds and he slept pretty well until 2:30am. Then Jude had an issue with apnea and we could not keep his oxygen level up. We would reposition him to get his oxygen to 100 and then within 5 minutes his alarms were going off again because his levels were in the 80's. Again was this just the apnea, was it a breathing issue, was it pain, or what. So we worked and worked on getting him in the right position and at the right level of oxygen.  I really didn't want to give him anymore medication since we were already dealing with respiratory issues. Finally about 4 I turned him to his right, turned up his oxygen to 9, and he went to sleep without issues.

I am tired and cranky. This week has taken a toll so if you are easily offended if someone snaps at you I suggest not calling or texting, lol! I am kidding, I will do my best to be nice.

Wednesday, January 21, 2015

Jude's Tuesday night update.

Jude had another rough night last night. At one point even on 9 liters of Oxygen he couldn't keep O2 stats above 88. We went through all his medications again to get him stablized and resting. I began reading up on the Sundowners syndrome our other nurse mentioned  Granted this is more for elderly patients that suffer Dementia but Jude does have similiar symptoms. Today Charlotte said he did much better and even went from 8:30-1:00 on room air. That's the first time he has done that! However, she did have to put him back on 2 liters.  

We will see how tonight goes.

Tuesday, January 20, 2015

Jude's night and the hospice gift.

It was very slow at work yesterday due to the holiday so I left about 3pm to try to catch Hospice at the house. Unfortunately, I was to late and they had just left. The hospice nurse said if Jude spikes a fever again he will need an X ray and that his lungs sound about the same. Which means his lungs sound raunchy (sp?). Jude was very happy yesterday when I got home but he did look pale to me. Granted he isn't getting much vitamin D but he still looked pale. Charlotte said as the day came to a close that Jude's lung sounds had deteriorated from how they sounded that morning. Right before Charlotte was going home for the day Jude began to get stressed and toned out. So about 6pm I gave him some Ativan and he began to calm down some.

Jude slept fairly well last night. He woke about twice in the 3am hour crying. I am not sure if he was hurting or just wanted to be rolled over. I repositioned him and he went back to sleep both times. Then around 7 this morning he was gasping but his o2 level was at 100 so I didn't worry to much.

We received a phone call yesterday that the night nursing has been approved from 10-7 temporarily. I know this should be a good thing but I almost felt let down when I heard this information. It's yet another person in my house and they will be taking over MY job with Jude. SO I am struggling with knowing this is probably best for Jude but emotionally not the best for me. Physically I am sure it will be great to get sleep but I also know I will still hear every beep and every alarm. I talked with the nursing agency last night regarding what we are looking for in a night nurse. So they are currently searching for someone and we will know soon who that person will be. We also still have some respite hours and that normally consists of Mike's mom coming to sing to Jude and tell him stories.

Emily and I are both not feeling very well and "ain't nobody got time for that". So I am hoping it goes away very quickly. I will check on Jude in a few hours and see how his lungs sound today and how he is acting. It's such a balancing act with Jude and knowing when to run to the doctor and when to just stay put. It's knowing there isn't much that can be done for his lungs because they are so tired and sick. So what do we subject him to and when do we just keep him comfortable. I am not a fan of making these decisions. However you know Jude. He can go from being very sick to wonderful within hours and also vice versa. If for some reason Jude is developing pneumonia again (and I am going to stay positive he isn't) it will be his tenth battle.......tenth. What a little superman.

Hospice left a really sweet gift yesterday. They made a replica of Jude's hand and also left his footprints.

Monday, January 19, 2015

A fever and a smile

Jude had a difficult evening in regards to his oxygen level. He wasn't cranky or crying in fact he was smiling, but his oxygen wouldn't stay up. I thought this was my first tale tale sign that something was going on. Looking back even further my first sign was probably Saturday nights fiasco. So this morning I heard Jude cough terribly and I needed to check his feed so I got up. I noticed his heart rate was 176 but his O2 was good. So I turned off his feed, flushed his button, and said good morning to my smiley boy. Then I touched his arm and said "Oh MY!". Jude was burning up! He only had one small blanket on so I knew it wasn't from heating up in the bed. Still I pulled the blanket off and gave him a second to cool. Then I took his temp and it was 102 axillary so 103. I gave Jude some Motrin and then he began to retch and couch. He threw up a large amount of phlegm.

Charlotte is watching him. She said his temp is back within a normal range after the Motrin, his heart rate is a bit high at 154, and his respiratory rate is 32 (again a little high). She said his lungs sound great, but they sounded clear when he had that horrible coding episode. The pneumonia only showed on the X ray and even then it was questionable to some until the pulmonologist saw it.

So my dilemma is if we just watch him or take him in. If I take him in and get an X ray I feel it's peace of mind. If it comes out clear then we know we are dealing with something viral or maybe a reaction to medication. If it shows issues again then we can get a prescription for an IV at home that hospice can handle. I just hate to run Jude up there for no reason and put him through that trauma. He is smiling and happy. He is pale, but very responsive.

It's always a wonder with him. I wish they could bring an X ray machine to our house.

Sunday, January 18, 2015

Jude's weekend update.

Jude had a terrible evening yesterday. He had to have Ativan, Motrin, Tylenol, AND Morphine before we could get him under control. We had Mike's moms' 80th birthday here and everyone kept asking if the noise level bothered Jude, but honestly I knew that wasn't it. Jude was just high toned and having a storming episode like he does frequently. We finally got him asleep and he slept until about 3am. He was up and down past that point which included ANOTHER feeding tube blockage. It took me about thirty minutes to get the tube unblocked. I tried everything I could to get the tube unblocked and when I was about to stop trying I said, "Jude give me a little luck". I used a small syringe full of water to push through the tube with as much pressure as I could and the blockage finally cleared. Jude just smiled and fell back to sleep.

Tonight Jude has been great. I didn't even hesitate giving him Ativan at 7pm when he started looking a bit toned out. Despite my education that the medication can help him I have still held back from giving it to him. So I didn't hesitate tonight when Jude showed any sign that he needed it. Jude seems more calm and his oxygen seems to be doing very well.

Mike and I have moved forward to finishing up some renovations to our house. I know a house is just a material possession but I feel safe here and it's nice to finally start working on making things look nice. We need to finish painting the walls from expanding the doorways for Jude's wheelchair. We need to remove the carpet because it's torn up from his bed, stander, wheelchair, and the dogs. Mike is making a headboard for our bed out of an antique door that hung on a friends house and my cousin gave us loads of Elfa shelving that will go upstairs. It's a project that makes me happy and takes my attention. So it's relaxing.

Friday, January 16, 2015

Friday's update

Last night wasn't any better than yesterdays post. However I got a little sleep because Mike stayed up with Jude until about 1am. Jude still is toned out, fights sleep, cries in pain, and more. So I talked to his nurse this morning who reminded me we can give the Ativan and Morphine every six hours. I explained neither medication seems to be working but she pointed out a second dose might make the different. That's possible! I also put a text into Hospice who said they were going to talk to the doctor on call about possible solutions. I know it cannot be healthy for Jude to be awake 20 hours a day. His little body cannot reset properly. We have to have proper sleep to heal our bodies.

We are still suctioning Jude 3-10 times an hour. His pneumonia and lungs seem to have improved some, but his tone is back to the way it was after the surgery. At least it seems that way to me. I did get to hold him again for awhile last night and he was so happy about that.

Thursday, January 15, 2015

Nix last nights post on Facebook

Yesterday I posted on Facebook that Jude was having a much better day! In fact his nurse said it was one of the first days that she felt like she was seeing "Jude". He was smiling, communicating in his way, tracking things with his eyes, and when I got home he was still doing well. Then the BOTTOM fell out. I mean really? UGH! Jude was literally up the majority of the night. I tried Ativan but received no results and then finally about 12-1am I tried Morphine. It took about an hour for the Morphine to kick in and he finally relaxed and fell asleep.

My guess is Jude would sleep about 30-45 minutes and would then wake up crying. One of us would have to get up to reposition him. Sometimes we had to adjust oxygen or pat him for a bit to calm him back down. He would also wake up coughing terribly and we would need to suction him.

It was frustrating. I would like to go home and take a nap, but I am not sure I want to give up any hours at work.