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. 


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

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 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...

How to fall in love without losing herself..
When to try harder...

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...

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

Whom she can trust,
Whom she can't,
And why she shouldn't take it personally...

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

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." 


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! 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.