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. 

Wednesday, February 25, 2015

Jude's poor little toe.

Jude has a burn on his big toe from his pulse oximeter. It also looks like he may have a small pressure sore on the toe. On Monday when the nurses were gone I gave Jude a shower and I unhooked all of his machines. I noticed when I unwrapped his toe it seemed a little tight and looked a little skinny. I am assuming all of this was starting then. Everyone is pretty diligent about changing the pulse ox out each day just like they do with Jude at the hospital. However, today we read it should be changed out every 2-4 hours. Again, when Jude's in the hospital I WITNESS them change it each day NOT every 2-4 hours. The nurse felt bad, we felt bad, and Jude feels bad. Something like this could be really really bad for Jude. However Jude's sweet nurse Charlotte is on top of things and I stopped at the store to grab anti bacterial ointment with pain reliever and Aloe Vera. Hospice is also coming first thing in the morning.

Since everyone knows me ........... you know I googled this situation. How many times have I said on this blog NOT to google? Well I need to heed my own advice. So it seems sudden burns on people that have had pulse oximeter's can be caused due to skin integrity. A lack of flow of oxygen to limbs and a breakdown of skin can cause burns and sores. sigh.

Jude's had some oxygen issues throughout the day but tonight he seems to be resting comfortable. Jude's had his medication, I doctored his poor little toe, and he is tucked in to bed. 

Tuesday, February 24, 2015

Jude's not so great day

Jude had a hard day today while I was gone. I can tell he is getting sick again and Charlotte mentioned she noticed a change in his behavior on Friday. Luckily he isn't running a significant fever yet, but we are closely watching him. He had Morphine twice today, benadryl, and more to help him breathe and help him relax.

When I got home he smelled sweet from his bath that Charlotte gave him and he was snuggled into his pillow fast asleep. Charlotte explained he had several gasping episodes and she had to use the re breather or reposition him throughout the day. I walked away from his bed and looked from the kitchen into my living and thought "he is having a good day now". Then I stopped myself and he isn't. Let's be he isn't. I am not being sad, or angry, or anything other than 100% completely honest.......Jude is NOT having a good day, month, or year. His life mostly consists of being in a hospital bed in our living room now with his oxygen machine running and a suction machine frequently attached to his lips. He cannot stay in his wheelchair or bath chair for hours like he used to.  For a few seconds I felt sorry for Jude that he was having to live like this, but I know he is just happy with the love showered upon him. Jude knows only love and that makes these days more bearable. His little lungs work SO hard that Jude is frequently drenched in sweat. We thought he was just hot or had a fever, but Charlotte made the point today that it's probably just from working so hard and it made perfect sense. If we run a marathon we are drenched in sweat and Jude's little lungs run a marathon everyday. Yet Jude wakes up on his face and the constant fight seems to have little effect on his demeanor.

We are hoping the night nurse can make it today so he will have someone watching him throughout the night. We missed our nurses during icepocalypse. We are suppose to get 3-5 inches of snow throughout the night which may create delays in the morning. I need to remind mother nature I live in Texas NOT up north.

I am hoping Jude has a restful night tonight.

Monday, February 23, 2015

Jude's ice day

We had an ice storm here in the great state of Texas so I am at home with Jude today. His nurse couldn't make it because the roads were so bad. Jude is super happy I am home and I have been talking to him a lot today. I was able to snap a quick picture without his oxygen. 

I quickly had to put the oxygen back on and then I caught T Rex Jude. 

Earlier I wanted to give Jude a quick shower so I unhooked him from everything and quickly took him to his roll in shower. It wasn't long that Jude got very choked up and started turning blue. I yelled for Mike to bring me the suction and once I cleared him I ran him to his bed and gave him a breathing treatment. This seemed to help resolve the problems and as you can see above he recovered pretty well. He is running a slight fever and has had some oxygen problems all day but he is so happy! His cough has increase and he is a bit pale so I am wondering what is brewing in his lungs. However, I have decided to just enjoy our ice day and hug on him a lot. Ignore his tattered little pillow case. These sheets match his room but I cannot locate anymore and just cannot bear to part with them yet. 

Thursday, February 19, 2015

I asked him if I was an awful person and Jude's rough night

Jude had a pretty rough night. I could hear the nurse suctioning him and his oxygen level dipping on a pretty consistent basis. I would get up to check on him but there wasn't much more that could be done. When Charlotte got there she said she worked until about 11am to get him comfortable but he finally quit coughing. She said he is resting in his wheelchair now and seems pretty happy. I asked her how his lungs sound and she said "Like they always do". I replied "so terrible but you have heard them worse" and she agreed. I want to cry at night when I hear Jude's alarms go off and sometimes I do. Sometimes laying in the dark I just let the tears roll because I hate that Jude suffers with his respiratory issues. He coughs, gags, turns red, and almost throws up trying to clear his airways and breathe. Some days are better than others and I like those days! When he is smiling and happy without a lot of coughing. Primarily though it seems Jude just coughs all night long. 

Yesterday we received a copy of Mike's FMLA paperwork that was filled out by Jude's doctor. On the line where it said "expected outcome" it said "terminal" and I just lost it. Right there at work I just bawled my eyes out. So today I had lunch with Mike today and admitted to him I am not in the best of moods. I told him I fluctuate back and forth between wanting to be with people and getting severely annoyed with people. I told him I don't want to hear about people's happy days, happy children, and happy existence right now. I almost want to shout "MY SON IS DYING" when people start telling me about their happy days or their troubles. Then I paused and said "am I terrible? am I awful Mike?? So many people have helped us and I should be kind and loving to them, so am I an awful person". He said "Not at all and it's exactly how I feel too". I almost felt relief because I was feeling so guilty and terrible. 

So I am occupying my time when I am not with Jude on work and focusing on Emily's pageant in April. I am getting everything in order for her and getting everything paid for. It's very important to her and I want to make sure everything is set. I don't anticipate on anything happened regarding Jude getting more sick but in case I cannot be there I want everything to run smoothly so Emily's dad can take her. We have almost everything she needs in order with the exception of a few items we are going to try to tend to this weekend. 

I would like to thank everyone that came forward and provided meals when Jude got out of the hospital. It was so amazing to not have to cook. Work is flowing well and the rest of our lives seem to be rather calm so we are just taking it day by day. 

Wednesday, February 18, 2015

Being healthy

Jude has had some respiratory issues today but I am going to steer in another direction on today's blog. My friend Stacy whom I have met via Facebook through our children's similar situation shared this story today and I was touched.

When I met Mike I was in the best shape of my life. I worked out several times a week and I would generally eat pretty healthy. I didn't count every calorie and I did have my wine but I was very active and I knew I looked great. I related the the above blog in many ways. I agree that when you are a size 4 you tend to turn heads and offers for torrid love affairs are a common occurrence. 

Being thin and pretty has it perks and can make a persons self confidence soar. Working out also releases endorphins to help the mind and spirit. Exercise is something I truly enjoyed and looking good was a bonus. However was being thin responsible for my happiness? No. I was happy because I loved my life and was happy with the person I was on the inside so I felt it showed on the outside.  Keeping up with ones appearance and being healthy should be a way of life.....if you have that way of life available.  

Without question the last six years have been very rough and have taken a toll on me mentally and physically. When you work all day and go home to work at night there is no time for the gym. Sitting on a couch listening to a sick child takes over the need to be thin and beautiful. I still eat relativity healthy, I still consume my wine (helloooo calories), and I have little time to exercise. So looking at my pictures I see my hair has grown dark, my face has aged, and I weigh more than I ever have. 

Does this make me unhappy? No. I am still me and I refuse to give into corporate America's stigmata of what a beautiful woman has to be. I do not need to be airbrushed, I don't need to be a size 4, and I don't need to be coated with a tan. I am beautiful just the way I am because I am pretty on the inside and my child is much more important. I no longer turn many heads when I go out to the store but occasionally I get a wonderful compliment. My husband still loves me very much and I am very comfortable being the mom who has trudged through hell and came out a little heavier. I don't need a particular pant size to validate my happiness or self worth and you don't either. Being healthy is so much more than just a size.