Monday, July 27, 2015

How we feel

In normal Jude style he is a fighter and after a long terrible weekend he is looking better. We were all a bit emotional and exhausted this weekend. At one point Mike just laid in Jude's room taking everything in and didn't emerge for awhile. He finally told me in the car that he was happy Jude was looking better and then at the same time he wasn't happy. He said he doesn't want to spend years watching Jude got through the torture of trying to breathe. That's exactly what that was in the early morning hours.........torture. Watching Jude try to take air in and watching his stats plummet was AWFUL! It was terrible for Jude, it was terrible for us, and it was just a sucky situation. 

The positive part of this is Jude is smiling today and although not back to his normal self he certainly looks better. Mike and I were watching the movie "Impossible" last night. If you haven't seen it it is an amazing story. When the main character was being churned by the sea after the tsunami hit I told Mike "that's how I feel this weekend". Like we are on spin cycle and it won't stop so we can catch a breath. I can only imagine how Jude feels but he manages a smile whenever he can so he is our inspiration to be positive. 

We distract ourselves with the possible move and looking at homes. We are blessed to be able to eat out at lunch a few times a week and we have each other which is what matters. Emily is home safely from camp and Jude seems to be conquering pneumonia (yet again) so we will look at this positive. However ........... sometimes you just want to throw your hands up and shake your head for a few minutes. 


Sunday, July 26, 2015

A very hard overnight

Jude had a very rough night and morning. About 4am I kept hearing Jude's alarms go off so I got up to check the situation. Jude's heart rate would rise to the 160's and then fall quickly to the 50's. His oxygen was ranging from the low 70's up. We called hospice and they dispatched a sweet nurse named Pam. Before she got here the night nurse and I worked with Jude. She gave him breathing treatments; cpt, and more. Jude's hands were so pale from the lack of proper blood flow to his body. It was scary and sad. Finally Jude stabilized and I even got a tiny smile but he was still very out of it. We are all exhausted. The hospice nurse confirmed Jude was probably near cardiac arrest and she praised our night nurse for her hard work. She said this is a decline and she would be calling the doctor to update her. Now I'm turning off my phone and going to sleep. I may be asking someone to pick Emily up when the kids return from camp today.



Friday, July 24, 2015

Jude's update

Jude had a very hard evening with Mike and I yesterday prior to the nurse arriving. The only thing that could be done to make him feel better was to hold him. I told the nurse when she got there that Jude might want to be held but I don't think that ever happened. I know she worked with him through the night though. About 4am Jude started throwing up again and threw up three times that morning. So hospice is going back to see him. I am not sure what's going on but I am still leaning towards pneumonia. He had a slight temp this morning but it was a very mild temp. We will see. 

I am exhausted today. It's been a very busy week at work and with the stress at home I am just worn out. It just suddenly hit me around noon today and I am ready to go home and nap. I was going to blog something inspirational but my inspiration is to pooped. 


Tuesday, July 21, 2015

Jude, the house, and camp

Jude is pretty sick again but it's a guessing game (again) on what's going on. He is not running a fever but he has had issues with vomiting and is having oxygen issues. I had flashbacks to when I took him into Cook's and he vomited and then coded. So scary! Nurse Charlotte is with him and I know he is being tended to in the best possible manner. Hospice has also been out to see him and they are on stand by if something is needed like an antibiotic. He is still mustering some smiles and is always happy to see us. 

We found a house that we really liked and that would work well for Jude. It needed a bit of remodeling but it would have worked perfect. It had big lush trees, a carport Jude could sit under outside, and more. We debated on putting an offer on the house and listing ours because of Jude and because of other factors. Today we finally decided to take action and.........ready............someone put a contract on it yesterday. I am bummed today and the "well it wasn't meant to be" doesn't help so don't say it please. I will have a day of being bummed and then I will be alright and decide if we move forward or just stay put. 

Emily is at Young Life camp and it's odd not hearing from her everyday. I got a bit teary yesterday thinking of her going to college soon. I guess life marches on. 


Monday, July 6, 2015

An update on Jude and some pictures.

Jude is doing pretty well. He seemed to have kicked the butt of whatever he had again so he is yet again our little trooper. He is still having some oxygen issues and thick congestion but he looks so much better than he did.

My friend Sarah brought by the CD of Jude's photo's today that she took. I told her I love the photo's but hate my fat. Anyway, I thought I would share some of the ones that touched me the most. 










These are the moments we will always remember and cherish. 

I am still torn on the moving situation and I have been dreaming about it a lot. I am NOT one for change. However I talked to a friend that does property investing and he seems to think the property we are looking at would be a really wise decision. So we will see. I am just taking everything a day at a time. The hardest part for us was painting over Jude's red room. Mike and I couldn't do it so we hired a nice man who did. Mike said "I would prefer to move with Jude vs have to move because of Jude (losing him)". I also realized that Jude was growing older and in a "normal" situation his room would have already changed themes. So I took a picture of his wall so I could frame it.  Maybe next he can have spaceships, dinosaurs, or a Cowboy theme. 





Monday, June 29, 2015

Jude is sick

Jude is sick. He was on a great streak but it was inevitable that he would have to fight again. However this is presenting a bit different this time so I am a bit confused if it's pneumonia or a natural further breakdown of his lungs or both. Maybe he aspirated on secretions and it created a domino effect? I am not sure. I guess it's like the pulmo says........it doesn't really matter how it happened it's how do we treat it. 

On Friday we started noticing that Jude's heart rate was running pretty high which is generally a sign of a fever with him. However at that time he was not presenting any fever and not acting like he was in pain. He had a pretty rough Friday night and when nurse Allen got there Saturday it continued. When I came in to check on Jude Allen told me he wasn't holding oxygen and was at 10 liters. Allen never has Jude on 10 liters so I knew he was really struggling. This continued through the weekend and last night after the nurse left for the day Jude was really struggling. 

His temp was at 98.7 then quickly rose to 99 so I gave him Motrin. I checked again after about 20 minutes and it was 99.3. I waited some time period and when it kept rising I gave him Tylenol. Finally after retractions I couldn't get controlled I took Jude out of his bed and held him on the couch. I got him in a position that he felt comfortable, gave him some Valium, and he drifted off to sleep in my arms. For the first time all weekend his retractions stopped and he slept comfortably for about an hour and a half. 

I am not sure what's going on with Jude and I am really worried this time. I have had a bad feeling in the pit of my stomach for the last week even prior to Jude being sick. I am also on edge and have little patience. I always say we all have our own struggles but life gets to me sometimes when I see people not appreciating their healthy children. Life is what you make it! 



Thursday, June 25, 2015

Jude's update

Jude isn't feeling well again. He is very congested and is having oxygen issues. He is sleeping a lot more and he just doesn't seem himself to me. He still smiles at me but he is struggling. I plan on going home and holding him tonight and hopefully that will make him feel better. 

We are all doing well but I am wishing we could take a vacation. I will gladly give up any extra luxury for Jude but getting away with my husband for awhile sounds very nice. 

I will update more as Jude progresses or changes in anyway.