Wednesday, December 30, 2015

A tiny update

I still don't have much information. I haven't heard from the hospice doctor in regards to what her thoughts are on the bloodwork. Jude had a pretty good day with Charlotte yesterday but he had a host of oxygen issues with me. I finally just turned the monitor off and let Jude sleep without it beeping at us. His night nurse said he overall did pretty well but he did vomit again and ran a fever of 99.6. 

As of right now we do not have night nursing for Thursday or Friday night and it looks like it will stay that way. I am so frustrated! I feel like Jude is getting the short end of this because he really needs a nurse sitting by his bedside because he isn't feeling well. Mike and I will probably do a split shift like we did before and we will hope that Jude has two restful nights of sleep. We will set our alarms for his every four hour medication and breathing treatments. 

I do work for a bit tomorrow but then I will be off for the holiday. I hope everyone has a Happy New Year! 


Tuesday, December 29, 2015

An update from the lab

The facility that received the lab work called about an hour ago. They said Jude's white blood cell count is slightly elevated at 13.7. However his Neutrophils are high at 10,727. A normal range is 1500-8000. My understanding of Neutrophils are they are the most common white blood cell found in the body. They are basically the first warriors on the scene and have toxic chemicals in them to help kill off bacteria. I hope I explained that correctly because I learn as I go on these subjects. The assistant explained that you can have high levels of Neutrophils when you are fighting a bacterial infection, when you take certain drugs, or even when you smoke. Looking back at Jude's history in the Cook's portal I found a trend. Any time Jude had pneumonia his WBC was slightly elevated and his Neutrophils were through the roof. However she also said this could be caused if his body is just really stressed out. In other words if Jude's body is just so sick it's starting to shut down. 

When I got up this morning I was happy to see that Jude was alert. He didn't smile much and was very pale but he was resting comfortably and looking around. Around 11am Charlotte texted that they had a good day so far. We currently don't have a nurse scheduled for Wednesday, Thursday, and Friday nights this week. The nursing facility is working on getting someone but if they don't we have already decided to call in hospice. Jude is just to sick and weak to go without a nurse. Mike and I can take shifts but we feel it would be a disservice to Jude. 

It's been a bit of a frustrating week and I feel like a whine bag. It's been a host of issues from broken appliances to lack of nursing. Plus I am yet again back to thinking if we get Jude well this time he will just go through this all over again and I feel guilty for it. I will post more when I hear more from the hospice doctor. 

I found this quote today, "God will not look you over for medals, degrees, or diplomas, but for scars". -- Elbert Hubbard. Well then when the time comes he will welcome Jude without any hesitation for he is full of battle scars. 


Monday, December 28, 2015

A quick update

Jude is extremely ill. When your child is struggling to breathe you remember what's truly important. Which would be your child, your family, and your sanity.

You realize if a job is meant to be it will still be there for you when the situation has calmed down. You realize that there is so much minute stuff in the world that people focus and complain about that they shouldn't. Jude has never judged others, harbor resentment, or worry about things that really don't matter. I aspire to be more like him.

I know we have everyone's prayers so trust I appreciate them. Jude may get through this again like he has before but he is a pretty sick little boy. We all have him wrapped in love and are comforting him to the best of our ability. I should have some lab results on him tomorrow and will know more. I will post when I have those results.

A run down on Christmas and today's cluster


I worked on Christmas Eve until about 12:30 and then I went home and made a classic turkey dinner for my friends and family. My friend Gina came over with her children and we all played card games and waited on Santa to arrive. Mike's mom also made the trek to our house to spend some time with Jude. She is such a kind lady and really goes out of her way to see Jude on a regular basis. While we were playing cards Jude kept experiencing drops in his heart rate on a pretty consistent basis.  He was sleeping so I tried re-positioning him and it did help some. Jude has done this a few times before but never multiple times in a row. In addition it would drop to the 40's and just hover there for a bit before it finally went back to normal. The hovering part was also new and rather concerning. I decided to call hospice to see what they said about the situation. They said it could be either his sleep apnea causing a build up of carbon dioxide, an infection somewhere in his body, or a deterioration of his condition. Luckily this issued slowed throughout the night. I do believe it was his apnea but I believe it's being brought on by a possible lung infection again. 


Christmas started off WONDERFUL. We got up, shared our gifts, and went to an early show of Star Wars. However when we returned all hell broke loose with Jude. Jude had a horrible Christmas. That sounds harsh but it's true. He was tight, rigid, screaming in pain, crying, and just overall miserable. Nurse Allan was with him and Allan rarely gives Jude PRN medications. That day he had to give 28 rounds of medication and nothing worked. Jude would fall asleep for thirty minutes and wake back up screaming. Finally after everything failed we call hospice who really couldn't do much either. I had already asked for blood work and they said that was the right course of action. Unfortunately, there wasn't much more they could do for him that we were not doing. No one could get blood work until today and he was maxed out on medications. They plan on checking the blood to see if there is an infection. 

Saturday Jude started running a fever but he was so happy. Poor little boy had bright red cheeks and a fever of 100.8 yet he found a way to smile through it all. It was a complete 180 from Christmas but still a pretty good indication that something is going on. 


Saturday night we sat glued to our Tv's as we watched our neighbors to the East of us deal with horrific events. I have mentioned before that I have been in multiple tornado's. Once you have been in one or see the aftermath of one you never joke about them again. You never think you are being dramatic and you never fail to respect mother nature. I sat in tears as I watched this flash on my TV screen. 



Then today........sigh. Jude woke up with a barky seal cough and yellow secretions. In addition his feeding tube failed yet again and nurse Allan is not feeling well. The only day the doctor can replace Jude's tube is today. So I am trying to coordinate setting up transportation for Jude to get to the hospital. I considered going home and riding with Jude to the hospital but Allan says he will be fine. I then have to meet Emily to get her a key. It's just a cluster this morning. In addition we have some nights this week we need the agency to cover for Jude's nursing. I am hoping that goes through smoothly. I think the single hardest part of all of this has been working full time and not being able to be home to handle situations like this. 

Wednesday, December 23, 2015

Quit complaining

As I scrolled my Facebook feed this morning I noticed a disturbing trend. I noticed there was one complaint after another regarding the holidays, life, or what seemed like rather insignificant things. Last week I had an old friend stop by my office and he made me smile several times. He made a few comments about complaints and then he paused and said, "Look who I am complaining to.... it must be hard for you to hold my tongue sometimes." I guess it can be but for the most part I am just thankful that most people don't know the experience of having an extremely ill child. Sometimes I want to tell people that when they complain about being tired there is a mom out there that has been up with their terminally ill child for days. When they complain about the holidays there is a dad out there that doesn't get to experience putting toys together or playing Santa to his child because that child is so sick. That when they complain about going to the store or the mall that there are parents out there that don't really know how to shop for their ill child or they have lost a child they once shopped for. So maybe we should all including myself take a minute to remember to be grateful for all we DO have and DO get to accomplish this holiday season. 

Jude is acting ill again but I am not sure if it's the weather or if he is truly sick. I asked him if he apologized to nurse Candice last night because he gave her such a rough time. It wasn't an easy evening with him on my part or overnight with her. He was very rigid, crying, ran a bit of a fever, but then he would smile. It was like he would experience every emotion possibly in a five minute time frame and then it would just cycle again. I have noticed an increase in seizure activity with Jude and plan on placing a call to his neuro today. 



Tuesday, December 22, 2015

Is it day or night?

Jude is struggling with mixing his night and days up. I hear this is a common problem in nursing home along with "Sundowners". Jude exhibits a lot of behaviors of the elderly. Last night seemed to be a bit better because he was awake when I got home and stayed that way until the night nurse got there. He was very happy but every now and then would stiffen up and cry out. I got up several times last night to check on him and at one point he was sound asleep. I was so happy to see that he was actually sleeping at the appropriate time. However when I got back up later on and he was having a party in his bed. He was just looking around and was very wide awake. 

Jude's feeding tube is getting hard to push again so I am predicting a trip to the hospital again to get it changed. That's the one factor that keeps us continuing to visit the hospital. I have to admit that I am really looking for to the holiday break. I think we will be without a nurse on Christmas night but at least we don't work the following day and can sleep. 

Hope everyone is well. 


Friday, December 18, 2015

Lessons from Grandmother

Today I found a post on Facebook from a friend and it made me think of my grandmother. The following post was so wonderfully written by Maya Angelou. 


A WOMAN SHOULD HAVE ....

Enough money within her control to move out...
And rent a place of her own
even if she never wants to
or needs to...
Something perfect to wear if the employer
or date of her dreams wants to See Her in an hour...

A WOMAN SHOULD HAVE ...
A youth she's content to leave behind....
A past juicy enough that she's looking forward to
retelling it in her Old Age....

A WOMAN SHOULD HAVE .
A set of screwdrivers,
a cordless drill, and a black lace bra...
One friend who always makes her laugh...
And one Who lets her cry...

A WOMAN SHOULD HAVE ....
A good piece of furniture not previously owned
by anyone else in her Family...
Eight matching plates,
wine glasses with stems,
And a recipe for a meal that will make
her guests feel Honored...
A feeling of control over her destiny...

EVERY WOMAN SHOULD KNOW...
How to fall in love without losing herself..
HOW TO QUIT A JOB,
BREAK UP WITH A LOVER,
AND CONFRONT A FRIEND WITHOUT
RUINING THE FRIENDSHIP...
When to try harder...
And WHEN TO WALK AWAY...

EVERY WOMAN SHOULD KNOW...
That she can't change the length of her calves,
The width of her hips,
or the nature of her parents..
That her childhood may not have been perfect...
But it's over...

EVERY WOMAN SHOULD KNOW...
What she would and wouldn't do for love or more...
How to live alone...
Even if she doesn't like it...

EVERY WOMAN SHOULD KNOW...
Whom she can trust,
Whom she can't,
And why she shouldn't take it personally...

EVERY WOMAN SHOULD KNOW...
Where to go...
Be it to her best friend's kitchen table...
Or a charming inn in the woods...
When her soul needs soothing...

EVERY WOMAN SHOULD KNOW...
What she can and can't accomplish in a day...
A month...
And a year... ॐ

Written By: Maya Angelou/Pamela Redmond Satran


I knew my grandmother would like this and she has taught me a lot of the same things. She told me too that as a woman I should always have enough money to make it on my own and to be strong enough to be alone. She taught me to write thank you notes or at least pick up the phone and say thank you. It's a practice that I am proud has been instilled in my daughter. 

I tell my best friend all the time that I am buying her a set of pink tools because I was taught a woman should always have her own tool set. I have learned on my own that even though your childhood wasn't perfect it's over and therefore all you can do is make someone elses childhood better than yours. I do in fact have several friends I can trust and several I can cry to. I also have amazing recipes that my grandmother taught me that I fix for guests to make them feel special. In fact several of them now ask for my sweet potato casserole or the Napa Cabbage Salad frequently. I don't own any wine glasses with stems because it never fails that I WILL break them. My grandmother is old school with sass and I am very thankful for the lessons she has taught me throughout my life. I cannot imagine my life without my grandmother in it and I treasure our talks and time together. 


Thursday, December 17, 2015

Merry Christmas and Jude's update.

Hospice recommended increasing Jude's Gabapentin which is a medication to relieve nerve pain. This has seemed to help some but I still wonder if he has something brewing in his lungs. He is more relaxed but still having issues with rigidity and crying episodes. However the crying episodes are not as frequent. Last night Jude wasn't feeling that great but he was comforted as long as I held him. So we spent some time watching TV together. Every now and then Jude would stiffen out and it's very difficult to hold him when he does that. His head gets buried into your forearm to the point it causes a lot of pain. Jude still looks very pale to me but he was able to spend some time off his oxygen last night so that's actually a very good thing. It's eerily quiet in my house when the oxygen machine is not running. 

It looks like we will be spending a quiet Christmas at home this year. Jude cannot travel to anyone's house and we have family going out of town. So I decided to make a full Christmas dinner on Christmas Eve for anyone who wants to attend. Then on Christmas day nurse Allen will watch Jude for a few hours while we treat Mike to Star Wars as a gift. Trust me I am very excited about that as well! 

Thank you for reading our story, all your prayers, and all your love. We wish you a very Merry Christmas from myself, Mike, Jude, and Emily. 



Monday, December 14, 2015

No nurse and a long night

Last night I just hit a wall. I have posted before that we have had some issues locating a weekend nurse. Well the regular night nurse had to call in last night because she is injured. Things happen in people's lives and they need to take care of themselves first. However I knew the agency was going to have difficulties locating a nurse the day of and that this probably meant a very long night for Mike and myself. As predicted the agency couldn't find anyone so Mike and I were on duty. I have said it before that Jude is my child and I will do whatever is necessary for him but working a 10 hour nurse shift and then leaving to work a 8 hours shift at another job is hard. Overall Jude really was an angel considering the care he needs. We were trying to get him to sleep and around 10:45 he got so upset. His heart rate shot up and he became very rigid so we gave him some Morphine. This calmed him down and I dug out one of his new Christmas gifts. Let's just say that I highly recommend the Baby Gund Musical Whale. It has lights, music, and calming whale sounds which we know Jude loves. He even tracked the lights as they moved across the Whale. That's a huge accomplishment for a neuro kid. 




Jude finally fell alseep and we set our alarms to be back up at 1am for medication and a breathing treatment. Between 2 - 4am he had consistent oxygen issues to the point I just turned the machine off. Then at 5am he needed another round of scheduled medication and his breathing treatment. At 5 I also changed his diaper and blanket because he was sweating. He never opened his eyes but made a few little sounds. Once Charlotte got there this morning I greeted her happily and explained about the night. Then Jude woke up and began coughing terribly and she took over his care. I went to sleep for an hour and then went into work. 

I get frustrated at times. Everyone says, "I don't understand how you do this without complaining". Oh I complain just ask my close friends and family. The point is you do what needs to be done to properly care for your child. Last night I even said "I am tired of having a child on hospice but not tired of the child........does that make sense?". I feel like a terrible mother for saying that but my friend understood completely. I told her that some people would reply that it's just a part of Jude but it's not. Jude is not defined by his illness or the label of Hospice. Jude is still a 7 year old little boy who would be running, jumping, and playing if the stroke had not taken that away from him and it's okay to grieve that child. So having nurses in your house, juggling work and home, not having date nights, not having vacation, not being able to leave for Holidays or run to the gas station does take it's toll sometimes. I was in one of those moods last night that no one could say the right thing. Do you ever have those days? The phrases "Sorry", "God doesn't give you more than you can handle", and "everything happens for a reason" made me want to stab a fork in my eye! I reminded myself that people just want to help and sometimes all they can offer are kind words and to accept that gratefully. 

So as I left for work this morning I stroked Jude's hair and gave him lots of kisses.I thought of how much he has blessed my life even though that life is sometimes tiring.  He was so exhausted from coughing so much that he could only give me a small smile and it didn't last long. I told him I would be home soon to hold him and hopefully he would feel like smiling then. 




Thursday, December 10, 2015

Not an easy evening

Jude's got something going on and we are all guessing as to what it is. If he is awake he is screaming and crying so the only thing we can really do to ease his pain is sedate him. He is doing a bit better this morning but last night was difficult. He just looked and felt miserable. 



Hospice is coming out today and we are going to try to get to the root of the issue. Hopefully he will be feeling better soon. I hate to see him so uncomfortable. 

Wednesday, December 9, 2015

A rough evening, stockings, and lessons.

Jude had a VERY rough evening yesterday. He just cried and screamed for hours and I felt so bad for him. I gave him every medication I could and held him for as long as I could. Holding him seemed to comfort him some. By the time the nurse got there I was a bit frazzled. She immediately took over holding him which means a lot to me. Some nurses are uncomfortable picking up their patients but our nurses never hesitate. 

We have been considering going to 24 hour nursing for some time because it's probably in Jude's best interest. However I am very hesitant on giving up what I feel is the last of my mom time with him. I have 5 hours each day that I get to care for him and comfort him. Giving that up is heart wrenching to me but I understand it might be in his best interest. 

I shopped for stocking stuffers yesterday for my family and as usual it was difficult because of Jude's situation. There isn't much I can buy for him but I know he isn't going to complain. I got him a few little things and lots of love. Today Mike and I went to lunch and we were discussion the situation at hand in our world. How everyone is arguing over religion, refugees, and gun laws. Mike said, "This is why I say Jude is so much more evolved. He doesn't care what color you are, what race you are, what religion, or your sexual preference. The only thing Jude knows is comfort and love. It's why should all aspire to be like Jude." 

True.  


Wednesday, December 2, 2015

Texas Teen and Jude's visit

It's taken me a few days to finally get around to writing this blog. I think I had to get all of my feelings in check regarding the entire weekend and the big trip to Houston. The trip started out eventful because Jude was still not feeling well. I soon realized that transporting him to the hospice house by ourselves was going to be challenging. I also thought it might lead to increased health issues for Jude which I didn't want. So I called Hospice and they set up transportation for him via Med Star to the facility and then back home. Here is a little picture of us coming home. (You can click the photo's to make them larger)




Jude looks a lot weaker to me lately and he is very pale. I have also noticed that his secretions are very thick. He has been rigid and toned out and just having some issues. I am not sure what's going on but I still get a few smiles from him. 

The drive to Houston was a BEAST and sent me into a huge panic attack. I do not like highways Sam I am. I do not like them with rain, I do not like them with wrecks, I do not like the highways any way you have them. It poured on us the entire way there and my poor husband was about to throw me out of the car. Luckily we arrived at the Hilton Post Oak in one piece and we proceeded to greet our friends. It was a rare date night for Mike and myself and we had such big plans which turned into .........going to sleep...lol! We were exhausted and it's rare we don't have nurses or oxygen machines going so we both slept very soundly. The next night we held a cocktail party in our room for everyone that had supported and sponsored Emily for the year as Miss Dallas teen. There were several toasts that were given in her honor and I was in tears feeling blessed. Soon we were off to the prelims to watch the girls compete! Since Emily's city was at the beginning of the event she was one of the first to introduce herself. All week she had mentioned how excited she was that she would get to say Emily Lites - DALLAS! 




 The girls then competed in swimwear and evening gown and Emily truly looked like a princess in her evening gown. The girls are required to do all their own hair and makeup and we were very proud of the job Emily did. TO our great surprise Emily won the photogenic award that night out of 84 girls. 



We were so excited for her and she was thrilled. Emily did phenomenal! She came out of interview saying she gave the best interview she has given. Miss Texas was sitting with us when Emily told us about her interview and she commented that she judged Emily at Dallas and her interview was wonderful. So we went into the next day pretty confident that Emily would finally be called for the top 15. It had been four years of hard work and preparation. So when they began calling the top 15 we listened with great excitement, but then..........then they got to 10 and she hadn't been called. Then 15 and still no Emily. So they announced they had a tie and there were two more spots to fill and our hearts raced just knowing she would be called, but she wasn't. We were broken hearted for her. All that work. 

Emily stood in the back with a big smile and clapped happily for the winner. She always has such grace and poise. At first I was angry because I didn't understand but I reminded myself of several factors. First and foremost although it's a lot of work it's just a pageant and not placing is very much a first world issue. Second, it was a great weekend spent with friends and pageant friends that have turned into family. Third, although she hasn't placed Emily HASN'T given up and that is extremely admirable. Fourth, Texas is the most competitive state with the most contestants.  Finally, my husband pointed out that what is most important is that Emily had fun and she did. So I decided to focus on this excited face when she won photogenic and know it was a good weekend.  





and I think the award was well deserved :)



Emily will always be a winner in my book and someday she will get in that top 15! 

We are all now back home and trying to catch up on sleep and unpacking. Hopefully Jude will stay well and it will be a healthy happy Christmas. 

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! 

Saturday, October 17, 2015

No nurse equals The sleepies

So on Fridays and Saturdays Jude's night nurse arrives at 9. Last night when she had not shown by ten we knew something was wrong. We couldn't reach her via phone and neither could the nursing agency. To date she still hasn't been heard from. I'm praying she is okay but if she is I am confused. I think we are a good family with a clean house and a beautiful little boy. I would think it would be good to work in our home so to have someone no show confuses me.  The nursing agency has not found a replacement. As much as I love Jude I feel pretty defeated this weekend. I am still working on getting well and just wanted to get good rest but that's not happening. Luckily Allen was here during the day so we did get to catch up from not sleeping last night this morning. 

Jude is doing pretty well but his tummy is still sounding the alarm and his cough is pretty bad. He is currently sleeping which I hope doesn't mean he won't sleep tonight.  I am sitting by his bedside and it will be mommy and Jude time tonight. Emily is in Vermont with her boyfriends family visiting him at college. I am praying she has a safe flight home tomorrow and I know she is having a blast. 

Well have a great weekend everyone. 




Friday, October 16, 2015

Jude's pump

Sorry I have not posted but it seems the children are trying to off their mom. I came down with the sickness they were passing around and it was not an easy one to tackle. Luckily we all seem to be feeling better. However Jude is still running a low grade temp when I get home and he has been rather cranky this week. He has been having tone issues and he just wants to be held. 

Last night while holding him I heard a low pitched alarm go off that sounded like an ambulance. I wasn't sure what it was but since I knew it was to faint to be a real ambulance I started wondering if maybe it was coming from the Balclofen pump is Jude's tummy. Luckily the pump is not full of Baclofen so I knew it wasn't a critical emergency like it could have been. So we turned everything off in the house that could possibly make noise and soon we heard the alarm sounding from Jude's abdomen. So I have a call into neurology to see what their suggestion is but my guess is that Jude will be taking another trip downtown. 

When calling the doctor's office this morning I started getting angry again about the pump. I know it's not their fault and they were just trying to make Jude's life easier, but that is not what happened. Since that pump placement our lives have been in a lot of turmoil and the pain that Jude suffered makes me upset. I took a deep breath before connecting to the nurse and reminded myself the issues from the surgery were just a fluke.  I then calmly explained the alarm was sounding and then answered her questions. She said she wanted to consult with the doctor before advising us which way to turn. 

Wednesday, October 7, 2015

Updates on the situation

Jude is doing better today but Mike's father is not. I have not posted in detail about this but Mike's father had complications from surgery. Just when we thought he was improving there have been a few set backs. I feel for Mike and his family and I can see the stress in my husbands eyes. On top of having a very ill son he now has to face the challenges of helping care for a sick parent. I have been in this situation and making major life changing decisions for someone elderly is taxing. There are financials, living situations, emotional changes, and more that is impacted. So I am standing back watching and praying for everyone involved. I am hoping for improvement but realistically understanding the situation that is developing. Mike's sister has been amazing during this whole situation and that woman deserves about 15 million bubble baths and lots of wine! The good things is Mike's parents have lots of people that love them. 

Jude smiled at me this morning before I left for work which was great to see. He had ran a low grade fever throughout the night but I asked the nurse not to give him anything unless he was uncomfortable. I wanted to fever to do it's job on top of the antibiotic that he had been prescribed. I am hoping that I see even more improvement when I get home today. Emily finally went back to school today and she is on the mend as well! 

As always we appreciate everyone keeping up with our family and all the prayers! 


Tuesday, October 6, 2015

A sick little Jude again


Same song different verse :(. 

So Jude is really sick. About 3am his oxygen levels just wouldn't stay up even at 10 liters so I eventually asked the nurse to just spot check his oxygen levels. His color was decent and he was not in respiratory distress so we just let him sleep. He did have a horrible cough and my understanding is the cough has been pretty consistent throughout the today too. Hospice is on their way to see him again and they are taking him an antibiotic. Emily was diagnosed last night with bacterial bronchitis so I have no doubt that's what Jude has. We just want to make sure his hasn't turned to pneumonia or hope it hasn't already. I have a sneaking suspicion this was brought home from the hospital last week. Although hospitals can provide great care they tend to be laced with germs and infections. 

So please keep Jude in your thoughts. I will update more when we know more. 

Monday, October 5, 2015

Kids down! Kids down!

Poor Emily has been sick since last week and doesn't seem to be improving. She was seen by a doctor Friday night who prescribed her an antibiotic but with no improvement I believe she was misdiagnosed. So I will be taking her back to the doctor at 3:30 today. 

In addition to Emily being sick Jude isn't feeling well either. I noticed that he was sleeping a very extended period of time yesterday which indicated something was going on. This morning he woke up with a seal like bark and finally coughed up a large amount of congestion. So we have hospice going to visit him today. However if Emily has something viral then that's probably what Jude has and viral just has to take it's time to work it's way out of the body. I did not like the way his cough sounded at all so I am hoping his body can fight this appropriately. 

I was a little frustrated that I would have to leave work early to take Emily to the doctor. It always seems I am leaving early but since I just miss an hour here or there I still haven't exceeded my allotted number of hours for sick days/time off. So then I began to think that it would be nice to just take a day off without anyone sick but I slapped myself for being negative. The kids may be sick but I have wonderful children. I may have to take her to the doctor but I am blessed to live in a country that has great medical care around the corner from my house. I have a car to get me to and from work and the doctor and a nice house for my kids to stay in. I have the means to get their prescriptions, juice filled with vitamin C, and blankets to make them feel better. We are the lucky ones. 


Wednesday, September 30, 2015

A quick little update

So Jude had a terrible day/night on Monday and we were growing concerned there was an infection or something happening due to the tube mishap. We did discover the area around the tube placement was very red. Jude was in so much pain that nothing would control the situation at hand. Hospice came out that day and requested that we give pain medications every few hours to stay on top of the pain so he could rest. This seems to have worked because Charlotte said he is having a much better day today. 

So I have been very busy lately and it is becoming overwhelmingly exhausting. I try to keep work and my personal life separate but sometimes being so busy during the day absolutely wears me out for home. I am also struggling again with people complaining over first world problems. When did so many people become so concerned about designer labels and other materialistic items. When did it become okay to throw a huge hissy fit over those labels? I don't know. I guess to each his own but I find myself a bit frazzled and frustrated today with certain situations. When I hear people complain about such frivilous items I thank the Lord for Jude. He has taught me what's really important in life and to embrace every step of our path together. Jude is a great teacher. 



Monday, September 28, 2015

and the little ambulance goes weeee wooo weee wooo..........

I am just now getting a chance to update from our adventurous week - weekend. Mike and I got to bed rather late on Thursday night only to be awoken by a startling knock at our door around midnight. Our night nurse was upset and said she had accidentally pulled Jude's feeding tube out. Jude has a GJ tube which means a portion of the tube goes into the stomach and the other part into his intestine. As she was putting him back into his bed the port of the tube got snagged on the side of the bed and was ripped out. Jude was screaming, she was upset, and Mike and I just looked at each other. Mike said "Mic key button". I replied "Yes... It should be in his room. You get that I will call 911". Calmly I called 911 and Mike placed a spare button in the hole in Jude's tummy to prevent it from closing up. There was a debate between Mike and myself on whether we should actually transport Jude but I decided it was a go. From a mothers stand point I wanted to make sure he was okay and get the procedure done as soon as possible the next morning. I knew they couldn't replace the tube in the ER since it's an extensive process. I wanted him to get back home as soon as possible. 



The sweet nurse followed behind the ambulance in her car and I knew she was worried. Once we got to the ER they checked to make sure Jude was okay and then the nurse left. Jude and I finally got to a room about 6am. We then got about two hours rest before we were up and going again. The hospital said they had a lot of procedures that day so they were happy we were there early. I actually got to sit in on the procedure with Jude and he was literally an angel. He barely even flinched when they laced the long tube back down his little body. Once we got back into the room he was very happy. I think he was just happy we got to spend some quality time together even though it was in a stressful situation.  



He was such a little trooper. After the procedure we had to obtain medical transport home and that proved to be difficult. We originally had a full medical team with teddy bear transport lined up but there was a critical situation they were rerouted to on care flight. So then I called hospice who helped get Med Star lined up and we finally rolled into our house about 7:30pm on Friday evening. We were very thankful to be back home. When the nurse got there at 9:30 Jude and I both went fast to sleep! 

I did have to add a note to this blog before I closed. Throughout the stay at the hospital I kept hearing "you brought so much stuff" but I would just giggle. The initial time I heard this was with ambulance  that picked Jude up. Mike and I are so well versed at emergency situations that we literally move like a flow chart. One person packs meds, one packs diapers, the parent overnight bag, etc. This is the system you follow to make sure you are well prepared regardless of what situation may pop up. When we initially got into ER room the ambulance crew began to unload Jude from the stretcher. The nurse asked for Jude's medications so I handed her his medication list and explained we brought all his meds as some aren't available from their pharmacy. I explained I had his diapers because his size are not easy to find in the ER and then pulled out some other supplies I knew would be needed. Then turned to the nice EMT and said "This is why we have so much stuff". He just smiled and we wished each other well as he ran off to another case. 

So I told a fib Jude...........one more ouchie IV stick but hopefully no more! 

Wednesday, September 23, 2015

Quick update

Our lives are pretty much marching on the way they normally do. Jude will have good days and bad days. Yesterday evening was not a pleasant one and he was very toned out and upset. I went through several medications, re positioning, and holding him before he was finally comforted. We have a great new night nurse that seems to really care for Jude and she really works with him during the night. Generally when I get up to check on him she is sitting right by his bedside and sometimes even holding him on the couch.

So in regards to the house situation if we don't have a contract on our home by next Friday then we are not going to be able to move to the house we found. There were some stipulations that will just prevent them from selling. I have such mixed feelings. If we don't sell we know we are in a good spot for all of our nurses and the route is one Emily knows well. However buying the fixer upper with the pretty land gave Mike and I something to look forward to. It gave us something to shift our focus to for awhile. I keep saying if it's meant to happen then it will happen. Maybe this weekend we will have someone walk in and give us a cash offer.

It's been an extremely at work so I don't have long. Have a nice day all.


Tuesday, September 15, 2015

A sad little Jude and a heck of a morning

Yesterday evening when I walked into the house form work poor Jude was crying in pain. I felt so bad for him. Charlotte said she had really tried everything and wasn't sure what was bothering Jude. I decided I would pull him out of his bed and hold him for awhile. After 15 minutes he started to calm down and eventually fell asleep in my arms. I sat there watching a movie and held him for awhile so he could sleep. Eventually I tried to move him to his bed so I could get some dinner but he woke up very upset again. It was so sad and so hard to watch him upset with his little bottom lip quivering. We had a new night nurse come and orient with him last night and I felt terrible for her. I explained that she had walked in on a bad night with Jude and we went through everything I would do in the current situation. She was very sweet and pulled him out of the bed and started to hold him. He still kept crying and was turning his head back to look at me so I asked the nurse to review the MARS (medication list) and other information while I held him. The evening continued like this until about 2am when the nurse got Jude to fall asleep.

About 5 we heard Jude retching so I got up to check on him briefly. Mike then checked on him and the nurse informed him Jude had thrown up formula.........no bueno! Jude had a G/J tube and formula should not be in Jude's stomach at all. Last week I noted when he vomited that I also smelled formula but I thought maybe it was a fluke. I should learn to trust myself more when evaluating medical situations with Jude. Sometimes I just don't speak up loud enough. So on my way to work today I called hospice and requested transport to Cooks. While hospice worked on transport I called Cooks to see if I could set an appointment with the doctor. While they tried to get an appointment I worked on getting registration to allow Jude to arrive with Charlotte via a medical release from us. In the midst of this the nursing agency called to get an evaluation of the nurse last night. It's been one huge cluster of a morning. Luckily everything fell into place! Hospice is having a Med Star ambulance pick Jude up at 11:45 to transport he and Charlotte to Cook's. The ambulance will then wait an hour for Jude's procedure and transport them back home. What we will pray for is that there is nothing that would require surgery and that this is an easy fix. I am also praying this was not caused by the same negligence of mistreatment associated to the prior party in question. I am hoping this is a fluke. However the button is rotating and it should not move.

So it's been an adventurous morning combined with more car issues and high frustration levels. Like my friend Paula said "do you ever have a normal morning"...lol!



Monday, September 14, 2015

Weekend update

We didn't have a night nurse on Thursday so Mike took off work Friday so he could care for Jude. We then didn't have a night nurse last night so I stayed up. I have NO idea how I did this for six years because I am exhausted today. When a normal night nurse would go home to sleep we are going into work. However Jude was actually pretty good. He didn't fall asleep until about midnight and then he needed medications at 1am and 5am. He did vomit about 5 something but overall he was very sweet. He really appreciates when someone loves on him and cares for him. He craves human touch and gives you big smiles back. 

Tonight we have a new nurse that is filling in and I hope she is good! We also have another nurse starting the night shift tomorrow. I am hoping we can find some good reliable people that are sweet to Jude. I loved his nurse Cynthia and she will still fill in PRN at night but she had to adjust her schedule for her children. 

Jude stayed overnight at the hospice house on Saturday so we could show our house. It was a chore getting him up there but he loved it. Nurse Allen went with him and stayed during the days and Cynthia stayed with him at night. Allen said all the nurses just loved him and doted on him and Allen was so impressed with the facility. It was strange not having Jude with us overnight but it did give Mike and I our first night alone together in 5 years. It was needed.

Hopefully it will be a good week! 

Friday, September 11, 2015

Don't ever hurt my child!

I am having issues starting this blog because I am not sure how to word it to protect everyone's privacy. I also don't want to say to much but I did want to say something. We found out someone hurt Jude this week and it breaks my heart. My sweet little boy who does nothing but love people was hurt by someone who obviously has a mean heart. I cried yesterday wondering how someone could be so cruel and still hope that I am wrong but I know I am not. 

Mike took today off and stayed up with Jude last night so I could sleep. It was the first night in a while that Jude didn't have oxygen alarms ringing constantly. For the most part it was quiet and peaceful and I slept fairly well. Mike is tired today but luckily he didn't have to go to work. He is at the house with the great nurse Charlotte who is carefully tending to Jude and giving him extra love. 

I am really going to have to search for my forgiveness button on this one. 

Thursday, September 3, 2015

Stupid first world problems

Yesterday was Jude's 7th birthday. He yet again defied that odds and has made it two years past what the original neurologist predicted. We celebrated the day in a bitter sweet manner. I was very grateful Jude was with us and I held him close to me for a long time last night. He would give me cute smiles and I would snuggle and kiss him taking in the smell of his sweet hair like I always do. However I have to admit I did have a bit of mourning time yesterday too. While at lunch I witnessed several little boys running and playing and I felt a twinge of sadness for Jude and for our family. See ladies.........even after 7 years those feelings still creep back up so know it's normal. Jude is giving the new night nurse a run for her money with his oxygen issues and other problems throughout the night.  I know she is exhausted when we get up in morning. I normally wander out a few times a night to ask how he is and even though he is having issues her responses are always nice. Generally I will get a "wellllllllllllllll he is a bit better now".  

The house situation is growing into a monster. It's been frustrating with all the new guidelines put out by the mortgage industry. So I am not sure what will happen but I keep telling myself it's a first world problem and not to worry about it to much. Lately though the first world problems are beating me down. For instance my check engine light came on today and we are suppose to leave this weekend to Houston. I just had the car checked out so I have no idea what's going on. So I am trying to put together how we are going to get there this weekend. I had Jude set up to stay overnight at the hospice house for the very first time so Mike could go with us. We were also going to bring the dogs. We may just fly or have Jude stay at home with his nurses and a friend. I will figure it out but it looks like we will be taking Mike's car and leaving the dogs behind. 

I need to figure it out today so I am holding off until about 3pm to make any final decision. 

Saturday, August 29, 2015

Keep marching forward

Jude continues to have oxygen issues and bouts where he is crying out in pain. The nurses tell me his lungs "sound good for Jude" but that the lower lobes have little air movement. His witching hour seems to be from 4-11pm and we have to keep medications in him to relieve the pain. Ativan is the saving grace of medications. He is running at about 8 liters of oxygen tonight which is pretty high. Despite all his pain and agitation Jude manages small smiles when he can/

Emily had a few friends over tonight and they went to the movies. She is then having her cousin spend the night. This made me happy because Emily and I had a discussion the other night and she admitted that the reason she doesn't have friends over often is because it's hard to explain Jude's situation. I get it.... At 16 it must be hard to explain alarms and life saving measures to someone that never sees them. She also said I always tell she and her friends to be quiet because of Jude and she is right. I could tell Em to suck it up but well she has sucked up a lot. So I'm glad she brought people over tonight and she's even excited about the potential of moving. I think in a situation like ours you have to give each family member their own individual emotional attention.

I caught Mike and myself almost giddy over house plans for the new place. We have saved pictures, been in Home Depot a million times dreaming, and more. So we ask for prayers that Wednesday our credit is approved and our house sells quickly. On an ironic note we met the people who own the house we like and she said that every family that has lived in that house has had a family member with a disability. She said she prayed she would get a cash offer and that God brought her a story instead and she thinks she likes that better. What a sweet lady!!! Truly a good person. So I don't know if this will work out but I have faith :).