Friday, November 27, 2015

Figuring out what to do.......

We are suppose to leave today to meet Emily in Houston and watch her compete but Jude is not feeling well. He is suppose to go stay with his nurses and some of our family at the Hospice House. So I have no doubt he will be well taken care of since it's basically a hospital type facility. However getting him there may present some issues because Jude keeps vomiting. Mike was suppose to take Jude to the facility this morning while I went to an appointment. Nurse Alan was going to follow behind Mike and be there to work his shift at hospice until the night nurse came on. I had it all arranged that Jude would never at any time be alone. However there is now no way Mike can transport Jude alone. So I am unable to sleep mulling over options in my head. Mike jokingly said "don't ever plan on going anywhere", which we only go somewhere once a year and it's for Emily.

I think the best option is calling hospice to see if Jude can get medical transportation to the hospice facility and Mike can Uber back home. Second option is Mike stay home and I go ahead to Houston. Then Jude can stay home and be with his nurses here, but then I have to find a way to Houston. I would probably wait until my two friends that are going would be available. After my horrific wreck I have issues driving on large highways........yes it's weird. Anyway, the final option would be to have Jude stay at home with his nurses. My aunt is coming to stay with Jude during the five hour gap on Sunday so I would have to ask someone to come stay with her. I would probably ask my friend Gena who has a lot of medical experience with special needs. However that third option to me is a bit risky because I am depending on a lot of people to show up, be on time, and not leave a nurse working a longer shift.

I am worried about Jude and worried about leaving him. However I am also worried about getting to Houston and even though it's very much a first world problem I am frustrated. My aunt who was an RN offered earlier in the week to come in and I should have taken her up on that. One thing I am not worried about is Emily. She is well prepared and is already in Houston.

We will figure it out this morning and I will post an update. Jude is sleeping right now. He has only thrown up once this morning. I am pretty convinced the pneumonia has spread and that's what is causing this issue. He is running a fever and the vomit is a tale tale pneumonia sign.

Sunday, November 22, 2015

Pneumonia blows

Oh Jude's had a terrible night. He had a fever I couldn't break and was in so much pain. The past few days I could tell Jude was showing the classic symptoms of getting sick. Then tonight he really showed us. After many failed medications I called hospice. Jude has probable pneumonia, is very ill, and is waiting on his antibiotic to arrive.

So Mike just looked at me and said, "what do we do? Do we go to Houston, do you go alone, or what?". I have no idea. We are monitoring the situation but it never fails that this happens. Poor Jude and what a cruddy situation. Regardless we will get Emily to where she needs to go and if need be I'll fly in but I was looking forward to time with Mike. Jude's health is what's important so we will do what we have to to make sure he is well taken care of.

Tonight Jude was wheezing very badly which I have not seen before. The Morphine helped stop that issue. So some prayers for Jude would be wonderful.

Tuesday, November 17, 2015

Live like Jude

I think we were all notably shaken last Friday when Paris was attacked by radical terrorists. I think in America we felt so closely related to the situation because of the 9/11 attacks. We know the feeling of being completely exposed and vulnerable to a horrific situation. So I began thinking back to the 9/11 events and how young Emily was at the time. Everyone parents differently so some people may not agree but I have always been up front with Emily. Even as a small 4 year old child I would sit Emily down and explain to her when a tragic situation occurred and as shocked as some might be I even let her watch the event unfold on TV (monitored of course). I didn't want her growing up thinking the world was a wonderfully positive place that's all sunshine and roses. I wanted her to understand there are bad people in the world that intend to harm us. I wanted her to learn to not live in fear but to be educated and aware of her surroundings. So when her tiny voice asked me why the bad men flew the planes into the big buildings I answered as honestly as I could. Then I hoped that Emily would grow up learning to live life to it's fullest and know that by being a good human being she could make a difference. I repeated this process after the space shuttle went down, after multiple shootings at schools and colleges, Katrina, and more. I hoped that Emily would have a good understanding of the world and to be a proud American. 

After I reminisced about Emily I realized again just how lucky Jude is. He will never experience the fear of terrorism, the plague of war, or the surge of hate people feel for us. All he will ever know is love and safety. My husband always says we should all strive to live like Jude. I think he is right. 

Thursday, November 12, 2015

Hello Doctor!

Mike took Jude to his pulmonologist yesterday for an annual check up. This is the same doctor that sent Jude home on hospice last February after we made some very tough decisions. Mike said the doctor walked into the room with a smile and said,"well there you are!".  He talked about what a fighter Jude is and Mike mentioned how kind the doctor was. Jude got a good report and then they gave him his flu shot. So Jude was a bit cranky last night but at least it was a day with decent feedback on Jude's most current condition.

Thursday, November 5, 2015

A hamster running

Yesterday was frustrating. It was extremely busy at work and when I got home Jude had not had a good day. He was very rigid and would stiffen up and cry out. It would help if you would lay down and hold him but he was still having issues. I tried pain relievers and Ativan but nothing really helped. So I held him on the couch for about an hour and after the Ativan fully kicked in he seemed to relax a bit. This didn't last to long and when nurse Candice got there at 10 we were ready for her. I felt so bad for Jude and this seems to be an ongoing occurrence lately. I am not sure if it's all the weather changes we have had or if he is in pain from something else but the situation hasn't been easy. It is not easy to watch your child in extreme pain and not be able to do anything to relieve his discomfort. 

Poor Jude I felt so sorry for him but honestly I had hit a wall last night. I was exhausted and tired of running this routine every single day between work and home. Sometimes I feel like I don't get any breathing room and never get time to catch up. It's a balancing act of emotions, for instance I am so grateful for Jude that I feel guilty any time I feel tired or needing a break from everything. I am so grateful for our nurses that I feel guilty being overwhelmed by people in the house all the time. I am NOT the weight I want to be at but as evident from the above paragraph when I got home there was no time to walk. I enjoy taking walks with Leibe and it's the little exercise I get. I need time alone with my husband who I miss dearly even though we live in the same house and sleep in the same bed. I cling so tight to Emily because I feel like I am always waiting for the other shoe to drop that I drive her crazy sometimes. I am grateful for people in my life but I get so annoyed when people text me after work that I want to throw my phone against a brick wall. However if I don't hear from people I feel alone and sad. It's like a hamster in a wheel not knowing when to get off or what to choose. 

I think it's just the life of being a special needs parent. Today I have already called the nursing agency regarding a fill in nurse for tomorrow. Mike made two doctor appointments for Jude next week and talked to the hospital about using their oxygen source while he waits in between appointments. I tell myself this life is exhausting but it has purpose and meaning. 

Wednesday, October 28, 2015

Good nurses, Halloween, and a weekend away

Jude has been up since about 5am coughing. His oxygen levels wouldn't stay up but primarily he was just having a hard time with congestion. I went to check on him with the night nurse and Jude did smile at me. Our night nurse made me laugh because she said I always "sleep walk" in the room to check on Jude and she knows I am just tired. So we lost our weekend night nurse. I explained in a prior blog she just no showed two nights in a row. This made me sad because I really liked her and she seemed very efficient with Jude. However if she could no show on a little boy that is so sick two nights in a row then she probably didn't care that much for him. So luckily the fabulous Cynthia has been filling in and I hope she can continue to do so until they locate a new weekend night shift. We are so lucky that we have had some very good steady and loyal nurses. I cannot imagine dealing with this all the time so a big thanks to Charlotte, Allen, and Candice! I think we are a pretty good family to work for. I have my flaws but don't we all? I am really concerned about having a night nurse the weekend following Thanksgiving. We will be in Houston watching Emily compete and Jude is going to stay at the hospice house. Allen is going to work long shifts to make sure Jude always has someone with him but he will have to have a night nurse there 9-7. 

So it makes me sad that we will be putting Jude in the hospice house for the weekend mentioned but I have finally reached a point that I understand it's what is best for him. Having him ride 5 hours in a car sitting straight up while he gags on congestion for my benefit isn't fair. I sometimes long to have a regular family time so much that I think that interferes with proper decisions. The guilt of not bringing my child with me on a weekend get away also clouds my judgement. However I also owe it to Emily to support her in the one endeavor she has held fast to and to be there for her. It's hard though I won't lie. It takes a lot of mind control to understand the situation at hand. Jude needs a lot of equipment and medical intervention so being in a medical surrounding is what is best for him. So I am going to be his nurse on Thanksgiving to free up hours for Allen to be with Jude from 7am - 9pm everyday. Allen adores him and will take great care of him. 

I have to admit that even after 7 years I still struggle with watching the normalcy in other lives on holidays and vacations. It does sting a little bit. I thought about loading Jude into his wheelchair on Halloween and rolling an oxygen tank behind us so he can participate. Then I stepped back and realized yet again that would be for me and not for him. Jude doesn't need to be out in the night air, he doesn't need to be exposed to other germs, and I know in my heart Jude would rather be at home. So we will celebrate in our on way. 

It's still a struggle. So to the moms and dads that are just receiving a special needs diagnosis know that your feelings are normal. Even after all these years I still struggle some. 

Friday, October 23, 2015

Jude and Emily

Jude has not had an easy week. As soon as I walk through the door from work he starts crying because he wants to be held. I am not sure if it's the weather or the fact he is still battling thick congestion. As long as I hold him and don't put him down he is fine. We have increased his PRN medications but they don't really seem to help. One night when I was holding him he decided to have an accident that went all over me and I actually got a little grin out of him because of that. 

So little has been accomplished at my house this week because of his condition. I cannot really move from my couch but I did sneak in two walks with the dogs. Now Mike's back is out so I really haven't done much but tend to Jude. Luckily Emily has been around to help with the dishes and grab items that I need while I am holding Jude. We are suppose to have a night nurse this weekend so that's wonderful. I really think he needs a nurse with him overnight to make sure he is as comfortable as possible. We are having a bit of an issue with his medical supplies with insurance. I am hoping that gets taken care of soon and it drives me crazy it's even an issue. One of the problems is he is suppose to see his primary healthcare provider which was his prior pediatrician. However since going on hospice we have only seen the hospice doctor. This is creating havoc within the insurance department and they keep denying items. Luckily we have Charlotte and she is really pushing to make sure everything is handled. 

Emily is back from Vermont and is toughing out her junior year. She is getting good grades but being a teen is not easy. Yesterday she got a picture from the Miss Dallas crew so she could print out some autograph cards and it made her day. She loved it and I am so proud of her for sticking with her goal. I have mentioned before that competing for the title of Miss Dallas teen was her third try. I honestly would have given up! Yet she kept pushing forward just like she has for Texas Teen. She will compete for that title the weekend of Thanksgiving. 

Although we are receiving much needed rain here in TX we are now facing some flash flooding. The outer rain bands of hurricane Patricia are affecting our area. Since the hurricane hasn't hit land yet I am wondering how much more rain we will see. I am also praying for all those in Mexico and other areas that are in the path.

So from us in soggy Dallas Texas we wish you a good weekend!