The hospice nurse and the pulmo turned out to be 100% correct!!! I didn't mention it in my prior blog but when the nurse mentioned Jude was panicking like his COPD patients he said he thought Jude had mucus plugs. He believed Jude was panicking trying to expel the plugs so he could breathe and he was right. The day nurse had a hard morning with Jude but an okay afternoon. She mentioned she pulled out two large plugs from Jude's throat.
Tonight during my shift Jude started becoming very toned out and upset so I treated his pain with medication. Then Jude started coughing violently and ended up turning a horrible purplish blue. Sweet Gina was with me and I was yelling commands that she was following to the best of her ability. The vital machine was screaming with sirens as I yelled.. RAG! SUCTION! SALINE! MASK! NO WRONG MASK! Gina followed while holding her breath. I was desperate and Jude wasn't breathing so I grabbed him and sat him up grabbing the suction and forcing it down his throat to grab the plug. Suddenly Jude threw up the biggest mucus plug I have ever seen. Poor Gina gagged a bit and Jude was so exhausted he started closing his eyes.
The night nurse is here now and we are in bed. We are really tired and Jude is too. The question is if this is just a mucus plug issue or if his lungs are breaking down creating thicker secretions and a build up of these life threatening plugs. I was scared tonight and I am so thankful Gina was with me.
This is an overwhelming situation but it's unbearable if you are alone at the time something critical happens.
Jude did fairly well between 1-4 last night. However at 4am it was consistent oxygen issues. The alarms went off so much that I just got up with the nurse and tried to help position Jude. When Charlotte got there at 8 Jude was still having issues. Mike called in and I called in late to work so we could try to get a little sleep and make sure Jude would be okay. Charlotte really worked with him and when I left at 10:30 he was sleeping soundly and his oxygen was finally holding.
I am not sure what Jude's situation is except questionable. One day he seems like his normal self and then the next he is in respiratory distress. Jude always finds a way to rally back and of course we want Jude with us but we don't want him to suffer. He is very pale and Charlotte thinks his little body is just tired and needs lots of rest.
So we will see how Jude does when he wakes up and how he does tonight. They do have new medication schedules and no one is holding anything. If he needs it he is getting it. It's a balancing act because you do not want to suppress his system anymore than it already is but we also don't want him in pain.
Thank you for all the prayers. I am asking for prayers for Jude's comfort and prayers for Emily's safety. Also please pray for our dear friends whose father had a massive heart attack yesterday. He is currently in ICU.
When I got home tonight Jude was not well. He was very toned out and after Charlotte left he only continued to deteriorate. Soon Jude was red faced, arched back, and screaming in pain. This went on for hours until I called hospice. They couldn't even hear what I was saying but only heard Jude screaming in the background. They could barely make out what I was saying and just replied "We have someone on their way". It took a bit but a nice saint of a man showed up at our door and really helped Jude. After several medications Jude was more calm and lying comfortably in his bed.
The nurse told me that he normally works adults and that Jude reminded him of his COPD patients. He said that the look in Jude's eyes is panic because he cannot breathe. That's probably giving him anxiety which is causing other issues. For instance Jude had a massive seizure tonight that the nurse witnessed. This all correlates with what Jude's pulmo said that Jude is panicking due to his inability to breathe properly. HOW AWFUL! ugh. He said Jude's lower lung lobes sound terrible and he suggested keeping him medicated for comfort.
So I told Mike that the truth is that even though I wrote that poignant blog about putting Jude on hospice I never really grasped the reality of it all. I don't want to lose him, Mike doesn't want to lose him, our families are still hanging on too. We keep Jude hanging on. We keep Jude fighting..........it's us and it's the truth. I really believe Jude fights for us. I talk to him sweetly each day encouraging him and I won't stop that. However............Jude's in pain and he needs comfort. I need to stop worrying about medications and give him what he needs based on the doctors assessment. We all know children with various disabilities but those issues combined with lung disease are just heart wrenching at times.
I will talk more on this tomorrow but I just wanted to give an update.
I have such a pretty house! I do. It's a two story home that we have done extensive remodeling too. It has beautiful flowers that bloom in the front and a gorgeous butterfly garden in the back.
We now have laminate floors that make it easy to push Jude around on and we have converted our master bathroom into a shower that will accommodate Jude. A lot of people pitched in to help us make that shower possible. We are now in a much better position financially and have worked more on the house making it very nice inside.
We have added floors, new appliances, painted the entire house, added texture, ceiling fans, and so much more. We are proud of it. The only thing I really don't like is that the street is so congested with cars due to us and the nurses. I also miss my bath tub.
So why would we think of selling? A few reasons I believe. First as discussed before the profit we would make would literally pay off all of our bills except a mortgage but there is more to it than that. Our amazing journey with Jude started in 2007 when I found out I was pregnant. That's 8 years that we have been in our home learning how to walk a different path. I love being at home but sometimes being tied to home can become a bit stressful. Mike and I had big dreams when we got married. We wanted two children together and we wanted to move somewhere with land. All of that has been put on hold and for good reason. So I guess we finally decided to look at our lives and make a step for us. Our plan was to find about an acre of land with a home. We knew if we stayed close to our existing house we would have to remodel an older home. To get a new home we would have to go further out. I stressed over this because I didn't want to add any stress to Jude or our nurses for our selfish wants. It's been a battle of my mind...........and yesterday we found a house we thought we could work with. It's the right price, it needs work but we can do it, and Jude would have his own "suite" basically. He would even have an area that's perfect for storage and a place for a desk for the nurses to write their paperwork at. It's about 15 miles from our house so it's not that far but it's still a further drive for us and the nurses. It's up a winding road that leads back into these gorgeous woods that remind Mike of Colorado. It's peace for him I think and a blank canvas to work with. It's marked very low because it needs work. It even has a little guest cottage we could rent out but again.........but I just don't think it's going to work logistically.
I am not sure why I am writing about this on my blog. I guess I needed to hash everything out that is rolling through my mind in words. Such first world problems we have that I am worrying about moving from a beautiful home to a home that will eventually be beautiful too. I guess maybe it's nice to worry about something new for a change. Something new to focus on after so many years can be healthy I guess. Even if I decide to just stay put it's been nice coming up with all these grand plans.
Jude's doing alright. He did start running a slight fever again last night but he was sleeping well this morning when I left. I will check in on him soon.
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.
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.
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.
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.
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.
