Sunday, March 29, 2015

Jude's sickness and an update

Janice the crisis nurse showed up at 4pm yesterday and our weekend nurse Allen guided her through a quick orientation of Jude. He talked to her about how we suction his throat on a consistent basis because Jude cannot expel the congestion build up he accumulates like we do (hence one of the causes of pneumonia). This was different for Janice since hospice generally only suctions the mouth and not the throat. However after about the 15th suction she mentioned how miserable it must be being suctioned so often because it's not comfortable. She is right. It's again the balancing act of wanting to help your child and wondering if your rescue measures are to much. She did so well last night that Jude got regular breathing treatments, repositioned, and so much more!

I don't think the hospice nurse was expecting Jude to be so sick last night since she was filling in for a home health nurse. However she was extremely well prepared and amazingly organized. Jude was SO SICK! We were wondering if this was a final decline for Jude. He was having such issues breathing. The nurse was amazing at making sure medications were delivered to help him and to reposition him frequently. By the morning Jude's blood pressure was only 56/35 and I just cried a bit. Jude's nail beds were pink and I had gotten him into a position where he was comfortable. His apnea stopped and Jude was sleeping comfortable so I left to take Emily to meet some friends. I checked in about every hour and Mike told me his mom came to visit. Once his mom got there he said Jude woke up and looked very happy. His color perked up and Jude perked up........sounds like good news doesn't it? It's amazing how when you have a terminal child you get so excited and then feel a let down with the same roller coaster emotion. It's knowing that he has perked up only to go through the same suffering again. I want to explain..............when Jude struggles he cannot get a breath and when he does breathe it's with his stomach muscles. It's load and rattly and he is in a lot of pain and cries out. He sweats profusely from respiratory distress and it's very hard to watch. No one wants to watch their child suffer like that and no one wants to lose their child so it's asking yourself and asking God what is best? What's the best route? How do you properly care for your child and what medical treatment should you provide? Does this make sense? We both wondered if maybe Jude is fighting so hard because of Mike's mom. She loves him so.

About 5pm Jude started having a very difficult time. He was in so much pain that I gave Morphine and Hydrocodene. He was arching, sweating, crying, and so upset. Mike's mom was still here and like a trooper I saw her swiftly wipe her tears away. Finally I got him a bit calmed down and he is currently resting in his wheelchair. His oxygen has dipped again and he is currently using 8 liters. His breathing is becoming rattled again and we will wait on the night nurse to get here. There is a part of me that wishes the crisis nurse was coming back. Sweet Charlotte will be here tomorrow and she is so amazing with Jude. I know she will be on top of his situation and call us if anything is concerning. Jude is getting his GJ button changed (AGAIN) on Tuesday so he will be transported via hospice. The case manager over Jude has been great. When I called her today with an update she said "Jennifer he is going to do this". For a second I felt defensive then I explained to her that I understood and that I want to keep him comfortable. I guess I have just never been in this situation before and I am not sure which direction I should turn but I am turning the best I can.

Thanks to everyone for reading, keeping up with Jude, and all your prayers. I think now it's time to pray for Jude's peace and what will be best...........whatever that may be. So I am going to go smell his sweet hair and give him big hugs before he lays down. Only love Jude......only love.

Saturday, March 28, 2015

Judes update

To me it looks like Jude is responding to the medications but he is still having a hard time. Last night he started throwing up and if you remember my prior blogs throwing up is a bad thing for Jude. That's why his feeding tube goes direct into his intestine. However we have to put medications into his tummy with a water flush. He started vomiting and began choking then turned blue. It was very scary but Mike and I got him u see control. Today Jude was very smiley but was still coughing consistently. Em Has a full day of events so I will be checking in regularly on Jude. Tonight we have a crisis nurse which will be comforting.

Friday, March 27, 2015

A good day turned very worrisome

Yesterday coach Jason Garrett came to see Jude at our house. He was so kind and brought Jude an official helmet that he signed personally, a Jersey that Jason Witten signed, and a football from the team. It was a great day.  Jude even had really big smiles for the coach! 

It was a great day until mid afternoon. Jude began coughing uncontrollably and Charlotte had issues getting him under control. From the time I walked in from work I had the same issues. Suddenly Jude spiked a high fever and his color turned ashy grey so I called hospice. When they got here they said two things. Either this is nearing Judes end and he is having temperature control issues or he has probable pneumonia again. They went with the later. Jude is now on antibiotics and a steroid. I got up several times last night and at 4am Judes color was still terrible. When I checked on him at 7 he was gasping but his color looked better. I turned him to the right and I got some smiles. So we just hope we caught it early. If it's early enough then the oral medications will work. On top of this Judes feeding tube is becoming fully blocked again and therefore we will have to get him to the hospital to change it. I just don't think he is well enough to transport right now.

Providing his situation improves I will be at work around 10 today. I want everyone to know while I am there I work hard and try to provide you the best service possible but I am human. I appreciate your understanding during this stressful time. If you ever have issues on your policies just call and let me know. I will do my best to remedy the situation and again I appreciate your patience.

I didn't announce anything last night about Jude because we wanted everyone to remember yesterday as a good day with good memories. I have pictures to go with this blog but they won't post from my phone. I will add them later so be sure to check back if you read this blog this morning.

Wednesday, March 25, 2015

It's Wednesday!

Jude had a rough afternoon yesterday and a rough over night. I could hear his alarms going off as I drifted in and out of sleep last night. I would come into the living room to check to see how Jude was doing and the nurse would explain he was just having a rough time. He finally went to sleep around 4am and the last I talked to Charlotte he was still sleeping. Looking back I wonder how we made it to work after being up with Jude until those wee morning hours for so many years. 

We are dealing with mixed emotions around my house regarding Jude, work, and life in general. I have little patience for rudeness and I am pushing things like forgiveness. Complete forgiveness.......that means no questions, no dwelling, and you walk away a better person. My friend said I have had an enlightenment. There are things I have found through this walk with Jude that are important. Being positive, complete forgiveness of others, finding the silver lining, being your true self,  complete honesty, and finding inner peace. 

Mike is not feeling well and has been struggling with his respiratory the last two days. He mentioned to me that it makes him sad knowing that Jude struggles so much more than he does. He even mentioned that he isn't sure why Jude keeps running this race. He didn't mean that derogatory but rather that he hates to see his son in pain. 

Mike has an interview tomorrow morning with his work for a better position. We would appreciate your prayers. 

Tuesday, March 24, 2015

Laugh of the day

So it's perfectly fine but I had someone that seemed shocked I have been having headaches and now have developed borderline high blood pressure. Funniest comment of the day award in response: "Really because I am shocked you haven't developed a tick, freaked out, and grown two heads". 

Cracked me up! 

Hospice is coming to see Jude today. He is a happy camper but we are still having to keep him on pretty high oxygen levels. I will report tomorrow when I hear the hospice assessment. 

Monday, March 23, 2015

Blood pressure and Jude

Well it seems everything has finally caught up with me. I have high blood pressure. I'm upset about it because I used to be so fit. I have had heart palpitations but that is nothing new as I have always had benign palpitations. I walk each day, I take fish oil, and I drink my grape juice. All I can figure is the lack of sleep and constant stress have both finally found me. Short of quitting my job and staying home I don't see a solution but I will drag myself to the doctor anyway. I am thankful for doctors but I despise going. I think this means I may have to slow down..... So not my character. I'm going to have to relearn how to relax. 

Jude is still up and down. One minute he smiles and the next he struggles but he is a joy to be around. I held him again tonight for awhile and he was very happy! Right now he is sleeping peacefully. 

Sunday, March 22, 2015

Jude's Sunday

Jude still had intermittent fever and I'm not sure why. I have two guesses.... Bacterial walking pneumonia (again ) or he is cutting his back molars. I noticed they are coming in but Judes teeth never seemed to bother him before.  Some hours he is great and some hours he struggles. He is very pale with circles under his eyes but he fell asleep tonight in my arms and slept very well. 

Mikes mom is here to tonight bless her heart. She is very elderly and has pretty much given her entire life to servicing her children and making others happy. Tonight while I was holding Jude she just sat by him rubbing his foot and  bawled. Finally I grabbed her arm gently and said "Susie why are you crying? He is happy now and resting calmly". She said "I don't know I just love him". I said "me too but when you cry I get stressed and I bet that means you are stressed too. Let's look at this positive that God has given us extra time with Jude. He has granted us time to see how amazing Jude is and to love on him as much as we can without being sad". She just smiled and said "you are right and I thank God for that". Then I made up her little bed so she could stay the night and assured her if she hears Judes alarms overnight that we and the nurse would have it under control and not to worry. She said she would be sure to not get stressed but I know she will because she is basically a saint. 

Amazing people come into our lives for a reason!

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