Tuesday, March 31, 2015

Well there went the blood pressure

Oh my stress level is overloading. As mentioned Jude's feeding tube was becoming clogged. Last night Jude was screaming in pain and I searched for the source of the issue. I tried medications, I unwrapped the oxygen meter, I re positioned him, I tried it all. Then suddenly I looked at his feeding pump and a feeling came over me to pause the feed.  Jude stopped crying........so I tested it three times to insure this was the issue.  Each time Jude would cry and then stop crying. I also noticed Jude's tummy looked a little distended. So I turned the feed off! I wasn't sure the mechanics and how the pressure could be building inside but I knew somehow his pain was related to the feed itself. So the tube is officially no good. Luckily I had set up an appointment for today to have hospice transport Jude downtown to Cook's Children's to have the GJ tube replaced. I had even checked with the hospital to see if Charlotte could be Jude's escort if I sent her with a letter giving her full permission to treat Jude medically and make decisions on his behalf. So I packed Jude's little backpack last night and Charlotte got there bright and early to make sure Mr. Jude was ready to transport. She would give him all his feeds, breathing treatments, dress him, and more. So I went on to work. 

Then I got a phone call from Charlotte who said hospice couldn't transport Jude. In his condition Jude has to be suctioned on a frequent basis and Charlotte would have to sit next to him. There was not seat next to Jude in the van they brought. They have transported him before so I have no idea why they sent this type of van. So I just sighed and thoughts quickly rolled through my head making deductions and selections on the next moves I needed to make.. Mike had an interview at 1pm, I had a doctor appointment for myself at 11:30, and I sure didn't want to ask off work again. I called Mike............I am sure he could tell I was stressed. WHY was I so stressed? Shoot it was Charlotte there actually dealing with Jude...........but I was..........I am on overload. I cry easy, I stress easy.......I am tired. Anyway, I told Mike the situation and I told him I was calling to reschedule the appointment. I called radiology (they guide the tube in) and explained what happened and they consulted a doctor and moved Jude's appointment to 1pm. I then called and cancelled my appointment with my doctor for the blood pressure check.....it's off the charts today anyway. I then called Mike back to explain that I would take Jude to the hospital at 1. However, Mike said his interview was rescheduled and he would come get my van and take Jude. Charlotte will ride with him in the back to make sure his oxygen is on and he is suctioned. 

When I got up this morning. I saw this sweet little face. 

Notice his color is better and he is smiling. His cough is still pretty bad and he had oxygen issues yesterday evening, but he looks much better to me! 

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!

Forgive misspells! Blogging on my
Phone is a challenge! 

Saturday, March 21, 2015

How is Jude?

Jude is up and down. We have a few fears about his health and its decline. His hands look puffy and his feet have a slight bluish tint. His urine has decreased along with his bowel movements. Our home health care nurse called hospice yesterday to inform them what is going on so they are sending a nurse by to evaluate Jude's condition. A few people asked me about antibiotics yesterday and this what I found out. If hospice feels he has an infection they will prescribe the antibiotics to keep him comfortable. They do not think it will change any outcome of any situation or any road we may be heading down. 

So the fear or better yet understanding of this situation is it looks like Judes kidneys may not be working properly. However Jude has not had a fever again since yesterday and he has a way of rallying and being okay. I will say Jude doesn't look well to me. When he is awake he is so stressed and in such pain we have to sedate him. He struggles to breathe and is hurting and cannot tell us where he is hurting. 

We are okay. We are actually all very positive around Jude and are doing all we can for him. We know again this could be days, weeks, or years. It's a matter of keeping Jude as comfortable as we can. Emily and a quick appointment today and then her father is taking her to his house. Mike and I will be here the whole weekend with Jude. 

Friday, March 20, 2015

Jude's sick

Jude is sick.........

His fever is 99.4 even with Motrin. He had a lot of apnea last night and a lot of retracting while breathing. 

This isn't good and it makes me sad. I am not sure if hospice will put him on antibiotics or not. I will wait to see. I really don't know more than that so if you ask I won't be able to tell you anything further. 

Wednesday, March 18, 2015

Apnea and the morning

Jude had a pretty rough early morning. I kept getting up and down because I was hearing his alarms going off. Around 6:30am I heard Jude gasping for air and having pretty severe apnea. I asked the night nurse to remove the cannula and put on his non re-breather mask. I think asked her to do a breathing treatment to see if that would help calm his respiratory down. After about 45 minutes and lots of re positioning his breathing finally returned to normal. However then he started having a few issues with his oxygen level. Luckily by 8am when Charlotte got there Jude was resting comfortable. 

I also noticed that last night Jude's cough seemed like it was deep and coming from his chest. Generally he just has thick throat secretions and the cough is quick and easy to control. Last night he would get choked up and have a hard time recovering from it. 

Hopefully today will be much better than his overnight. 

Monday, March 16, 2015

Jude's update

It's extremely busy at work today so this will be a quick update.

Jude was very smiley this weekend and I really enjoyed spending time with him. However, his oxygen levels were a battle this weekend especially at night. When he does sleep he has more sleep apnea which also presents it's own set of problems. Throughout each night we would hear Jude's oxygen alarms going off fairly consistently. On Saturday I guess I was just exhausted and the nurse knocked on the door at 1am and Mike got up with her vs me. She explained Jude's non re-breather mask had stopped working.......not good.  Hospice brought out two more masks on Sunday. 

Today Allen says Jude is doing well. Hospice is going to go by and check on him to see if they hear anything new in his lungs that could be causing these issues. Both night nurses voiced that they have seen a marked change in Jude since last week. 

While writing this Hospice called and said they did hear some noise in his bottom lobes, but that he was pretty noisy in the upper airway. So sometimes it's hard to distinguish which is which. She said he was a very happy boy. So she is going to try to come back tonight during what we call "the witching hour" and see how Jude is doing. 

Thursday, March 12, 2015

Jude's lungs and keeping him well

When I got home from work yesterday Jude was sitting in his wheelchair and was so happy. He looked pale but he gave me a huge smile! Charlotte told Mike that she had really worked on his lungs throughout the day with CPT and with his breathing treatments. Jude basically has his own built in respiratory therapists now and he has a consistent schedule of respiratory work. Charlotte said she believes with this type of around the clock lung care we can keep Jude well for a long time. She then mentioned both his lower lobes now sound great. That was awesome news. 

Jude stayed in his wheelchair for about another hour while I took a walk outside in the spring air. The walk was refreshing and made my mood so much better. When I got back Jude was getting a bit cranky so I moved him to his bed and he soon fell asleep. Charlotte said he slept from about 9am - 3pm yesterday and she believes his body was just trying to heal. So I chalked him going back to sleep up to him trying to continue to heal. When Moji (night nurse) got there she still gave him his breathing treatments and CPT  while he slept. However Jude was really working to breathe and had a lot of retracting. For those that do not understand what retracting is I made a video. If you think it will disturb you then don't watch. 

I asked the nurse to put his re-breather mask on and this seemed to remedy the problem. So I began thinking about what Charlotte said to Mike. Can we really keep Jude well and possibly stabilize him to keep him with us for an extended period? Of course I want Jude with us. Of course I want him well. Do I want him spending the rest of his life lying in bed or in his wheelchair working to breathe ......... no. I think Jude is happy just being around us. He is an innocent soul that only knows love and he doesn't ask or demand for much more other than being comfortable and healthy. However, is it fair to him to keep him in this condition? What's the alternative? There is none. We will do what needs to be done for Jude's health at home and keeping him well and comfortable. We hold him, love on him, and play with him as much as we can. We put Spongebob on for him........well nurse Allen does because I think I have watched every single episode multiple times. It's Judes favorite cartoon. We play music and we cuddle next to him in his bed. We don't take Jude out anymore because he cannot be away from his equipment but Jude seems content. Jude's appearance has changed to me and he looks more frail but again he doesn't get outside. So we take it day by day, minute by minute and if we are doing that for years or months Jude is happy and that's the priority. 

Tuesday, March 10, 2015

Jude's Tuesday update

Jude didn't have a great night. Around 3:30am I heard him choking and his alarms going off so I got up to see what was going on. The nurse had given him his Ativan through the mouth and it made him choke. Hospice had asked us to give it sublingual but the dosage has changed and I think it's just to much for him. Therefore, I have been giving the medication through the tube and so has Charlotte. So we are going to ask the night nurse to give it through the tube from now on. Throughout the rest of the morning I could hear Jude's alarms going off. I ended up over sleeping this morning because I was very tired and when I got up Jude was asleep too. He was also retracting (using his stomach muscles to breath) pretty badly. 

Charlotte explained she couldn't hear any breath sounds in Jude's right lungs. She did a breathing treatment that helped some but she said at this time Jude is still asleep and his breath sounds are diminished on that side. Of course I wonder if he aspirated the medication into that lung, but he also tends to lay on that side more frequent than the left. He still cannot handle laying for long on his left side and his stats always drop. He does well in the wheelchair for about 2 hours, but that's the max he will generally tolerate. 

He isn't running a fever which is positive, but you can tell he isn't feeling well.  

Sunday, March 8, 2015

In response to a comment on my blog

I need people to understand my blog has a special purpose. If you don't then I prefer you don't read my blog anymore because you don't get it. I am well aware I can vent offline. However I can vent anywhere I want to while going through this and I don't need or want negative opinions. To the person who made the "sympathy" comment,  I understand what you were saying but the comment was unnecessary. Sometimes when stating an opinion we need to stop before voicing it and ask how it will make the other person feel we are voicing it to. My family is much better today but until you have been through what we have I ask people to reserve their negative opinions . This goes for anyone else that wants to comment about where I post or why I post. If you don't like this or think it's to frank I don't care. I realize this blog is public but it's here to help people going through something similar now and in the future. I committed to be honest with every single post and every single feeling. It's important for my readers to know feelings like mine are normal and are okay. Daily I receve emails from parents that have found my blog that just say "Thank you for being real. Thank your voicing what I want to".  They don't need to read anything but positive uplifting caring posts in return. They don't need lies but they do need the truth. I will stick by my reasoning that parents of sick children do not need or want sympathy we  just want understanding.

Ps. For those confused I did not authorize the comment in question I just responded to it. My amazing husband even had the same response "the comment wasn't necessary".

Friday, March 6, 2015


I am sad today

I am stressed today

I feel like I have zero support today.

I feel like I am falling apart.

I don't need anyone saying they are praying for me. I don't need sympathy. Yesterday was hard. I just needed to vent.

Wednesday, March 4, 2015

Trying to keep Jude comfortable

Jude didn't have a good later afternoon nor evening yesterday. Poor Charlotte had a very hard time with him and had exhausted all medication when we got home. Jude slept for awhile but then got back up pretty cranky again. I just laid in bed beside him and that seemed to help him out. Jude can look pretty amazing at times and then at other times he will look like this. 

He is up and down, happy then cranky, healthy then sick. It's a never ending cycle. His oxygen levels have been dipping still but you can get them back to normal fairly quickly. There have been debates on whether his current situation is normal or deteriorating. There have also been debates on whether it's mechanical blockages, the weather, if he is sick, or if it's his lung disease. As his mom I think it's probably a combination with the abundance falling on a further deterioration of his lungs. I just feel it in my bones. Jude really likes it when people are cuddling him. It makes him feel better so Charlotte and I both have been climbing into his bed and just holding him. I can also still get smiles from him when I talk to him in my high pitch voice. 

I was talking to my co-worker today and I was telling her about the night Jude was first diagnosed. I remember laying on the parent bed in Jude's room at Cook's Children's. He was in the metal baby hospital bed and I was listening to him breathing. I was afraid to go to sleep and asked the nurses to put a monitor on his heart for me. I guess it gave me some reassurance that if something should happen to him I would be alerted. Little did I know that despite his seizures his health was actually pretty stable then. We have learned so much over the years and our life has evolved with our continuous medical education. I shake my head at the broad medical education we have without the degree hanging on our wall. I have always been pretty outspoken when it comes to Jude's health and what he needs. I may not have all the answers but I have always pushed to find them. However now it seems there really aren't anymore answers that will make a large difference. It's just finding a way to keep Jude comfortable and that's been challenging since Friday. 

Tuesday, March 3, 2015

Low oxygen levels

Last night Jude was fussy again so I took him off all his monitors and held him for awhile. He just loves it. However after a few minutes Jude started looking very pale and listless to me so I hooked him back up to his machines. His oxygen level was at 72 (YIKES). I yelled for Mike to assist me so I could get everything on Jude quicker. I handed Mike the re-breather mask and had him put that on while I suctioned Jude. I did suction thick secretions which cleared Jude's airway enough to bring his oxygen level into the 80's. However we did struggle for awhile to get his oxygen levels normal and keep them that way. I also notice that Jude's coloring was still pretty off. I told Charlotte about this incident this morning and she told me she had something similar happen to her yesterday when she was bathing Jude. 

I checked on Jude throughout the night after that happened. The night nurse was probably wondering why I kept getting up but I kept hearing Jude's alarms go off. At one point when I walked into the living room I noticed Jude looked almost grey and this was very scary to me. So I re-positioned him to the right and made sure his re-breather was on securely and he started to pink up. 

I am not sure what's going on but I don't like this sign. This oxygen situation is a little more extreme than it has been. However, you know Jude! He could be up smiling today like nothing ever happened. I will hope for that.