Jude's rocky weekend

Jude has not had the best weekend. We were able to get out for a bit but I worried about Jude while we were gone. Tonight Jude had a hard time keeping his oxygen up and had very thick secretions. With all his symptoms it seems Jude is fighting a mild case of pneumonia again. Jude is a fighter and has done pretty well out of the hospital. So hopefully he will do alright this time. We have stayed on top of breathing treatments, suctioning, and repositioning. We will see how Jude does tomorrow with Charlotte and I plan on calling the hospice doctor too. Good thing is I just came to bed and I don't hear any alarm with his night nurse. 

A quick little stormy update

I am sorry I haven't blogged in the last few days. I have been fairly busy at work and home. I am also considering building an ark because it will NOT quit storming in TX. It seems mother nature is having some serious mood swings. I am now officially over hearing that we needed the rain because we have far exceeded that and people are losing their property and lives. 

The positive side of things is that Jude has been doing really well lately. He had a rough day and night over the weekend but besides that he has been very alert and happy. His congestion seems to be controlled with the suction or medications. His fever comes back every now and then but again it can be controlled. His color is good, his eyes are bright, and his smile is big. He loves being held right now and is very "talkative". So for right now Jude is thriving outside the hospital scene. 

We will take the positive days! 

Follow up

Mike and Jude made it to the hospital and back! They decided to change Jude's AMT GJ feeding tube out with the MIC Key brand and increased the size. Mike said there was a small complication and that they had issues with the guide wire. However they got it fixed and Jude was okay. 

Jude has been throwing up brown residue at home for about the last week and half. I did call once the boys left and asked the doctor what he thinks it could be. Radiology stated they didn't see anything and the GI doctor told me to call hospice. You know the old you call her no you call him situation. So I put a call into hospice to see if their doctor can evaluate the situation. 

So they are home safe and sound :)

Frustrating end to the weekend.

So this weekend was good but the end wasn't so great. Friday night I guess I got bit by something in my sleep. I woke up on Saturday with this large welt under my skin on my cheek. I thought it was just acne and didn't pay much attention to it until it started swelling terribly. By Saturday night it was up near my eye and my pupil was almost fully dilated. Since I love to panic I had convinced myself I was having a stroke or something. I finally calmed myself down and realized it had to be from the bite and it probably had an infection with it. I had some bacterial antibiotics that had been called in and proceeded to take those. By morning my eye was back to normal but I am still very swollen and my face hurts. 

Sunday just turned into a giant stressball. Our poor nurse isn't feeling well and needed to take off today. The nursing agency called and said they had checked with our normal nurses and no one could fill in and did I know anyone else. WTH? No and that's YOUR job.........really irritated me they even said that! So Mike made plans to stay home today. I couldn't stay home because my co worker is out of the office. Well Jude's feeding tube was becoming clogged again and I had contacted the GI office on Friday about getting it changed. That was a cluster in itself and ended with me saying "I shouldn't have to go through this every time his feeding tube gets clogged". I said it nicely I promise. After that sentence they seemed to be on the ball. Well............it's now completely clogged as of this morning. So we are rushing to try to set up Hospice transport but we don't think they will make it in time. Jude has an 11 am appointment in downtown Fort Worth. That means Mike will be taking Jude alone and although he isn't that worried about traveling with Jude I am. If you remember the last time we transported without another person to suction Jude choked and coded. So I am hunting someone that could ride with him to help. He is leaving around 10 I am sure. 

It seems it never ends. I am not having a pity party but I am frustrated. I can only imagine how Jude feels. 

Dr happy heart and the funky bunch

I went back to the cardiologist yesterday and reluctantly had the echocardiogram. The doctor told me that for what I have been through my heart looks amazingly beautiful. He said there is a little damage but it's nothing he cannot reverse with the medication. YAY! So I am in the clear. I was very fascinated with the sonography portion of the test and went so far to look up what type of schooling it requires. They actually make pretty good money and it's just fascinating! 

Jude is still running an intermittent fever but he is still very smiley. He is also so vocal with me lately and I just love it! Very blessed times with him. 

Nervous mommy!!

I have had an overwhelming sense of dread all day today. At one point I felt like I wanted to rush home to Jude because I just felt something was wrong. Rather than running out of the office in some crazy mommy panic I texted Charlotte and not so patiently waited on her reply. She assured me Jude was smiling and happy but he was running a fever again. She gave him some Motrin and this brought his fever back down. I have no idea what the temperature issues are. It's a guessing game with everyone when it comes to Jude and deciphering if he has an infection or if this is a new ongoing symptom. Regardless I have no idea why I am feeling the way I am today but it bothers me. I also keep smelling roses.............is that weird? Wait don't answer that. Oh goodness now I sound crazy but it's true. I don't know if it's a sign, angels, or maybe I have something neurological going on (insert laugh). I really think it's comforting so my guess is it's either my brain playing tricks on me or some type of comfort measure. It's never happened before but I will take it.  

On another note do you remember the blog I wrote about being comfortable with myself? Yeah I saw a picture of myself last night and wanted to crawl in a hole. That blog went out the window, lol! I have accepted I cannot do much in the way of hard work outs with Jude. I am exhausted and I have little time.  However I did order some fresh healthy meals for work and I am going to try to work out each day on lunch at the rec center. This combined with walking the dog should at least get me back to being comfortable again. All this starts on Monday. I have decided not to be to hard on myself if I miss a day. I realize my situation is very different from most peoples and therefore I don't think it's reasonable to hold myself to a certain standard. So maybe that's emotional progress? Anyway, the rec center by my work agreed to allow me to sign up under a resident status again so that's great news. 

We have had HORRIBLE weather lately in Texas. Right now it's raining so hard that many people are once again facing flash floods. Emily is currently driving home from school in it and it makes me very nervous. I am biting my nails until she texts me she is home. I am just one big bundle of worry nerves today aren't I? I need a bubble bath! 

A quick update.

There isn't anything really new to report on Jude. He is still fighting with a smile! He ran a fever on and off the whole weekend and his cough has gotten worse to me. However he still gives you a big bright smile if you talk to him sweetly. 

I just wanted to update quickly. 

Customer Service, Tornado's, and a fever

For those who read my blog that don't know me personally I live in tornado alley. Not Oklahoma tornado alley but still tornado alley. Last night this was about 15 minutes from my house and way to close for comfort. 

I actually snapped this outside my house about four years ago. 

Tornado's FASCINATE me! They scare the living crap out of me but fascinate me. Several of my friends call me weather girl and call for updates during a storm. Some make fun of me (including Emily lol)  but here is what I have learned after being in three various tornado's. They are like the ocean. They are big, vast, and amazing but they deserve our respect! They can wipe out life in a second and you need to be prepared. 

Our electricity went out for a quick period last night and as we were running with flashlights to get the oxygen tanks I decided I would be proactive today. We have the threat of very severe storms again tonight and tomorrow. So I contacted our electric company to ask them to list us as critical for electric since a lot of Jude's life support measures are dependent on electricity. I sent a letter via fax explaining the situation signed it and then cc'd hospice and Jude's doctor. After I faxed the letter it took probably fifteen minutes and I got a call from the electric company. The customer service agent explained that to list Jude as critical they had to have a letter on letterhead signed by the physician or otherwise they wouldn't mark him critical. I get it......people lie all the time, it's sad but they do. However after I hung up the phone and started the process of getting a physician to take the time to send this over I began to think. Sometimes I feel the customer service in our amazing country is lacking. I try so hard at my work to go the extra mile for people. Although I understand why they need the letter I thought about the call itself. If she had said "Ms Ortiz we need physician confirmation to authorize this change so may I have a number to call the doctor?" or "I need to get a letter of confirmation, may I have the number to the hospice company to request one and then I can follow up with you". What a difference I would have felt. I would have been so impressed with her company. Rather than feeling like I have yet another step just to get something accomplished for my son who is fighting so hard. I am not upset so I don't want anyone to think I am. I am merely expressing an opinion on the subject and how the situation made me feel. My husband says I am irrational because I expect people to act like I do. Maybe he is right or maybe society has just gotten so busy in today's world that we have forgotten how to be nice. I feel some businesses have made so many changes to the way they handle customer service that we as a people now lack that personal touch we used to have. I can remember the days with my parents as a child when people would pump our gas for us. There was a time when our groceries were carried out of the grocery store and loaded into our vehicles. These things aren't needed and probably take up to much time but they were so nice. I have clients that tell me all the time they pay a higher premium just for the customer service my office provides. We aren't perfect but we do try. 

Jude was doing well until yesterday at about 3:30pm. Since then he has had some issues including a fever that Charlotte walked into today. We will see how the weekend goes. 

Mothers day drama and Jude's hospice visit

The hospice nurse came by last night to evaluate Jude's condition. He had been very lethargic or sleeping all day. He is sleeping a lot more these days. She said she believes this could be a natural decline in Jude's condition and told me what we will probably be seeing over the next few days or weeks. She said his oxygen levels will most likely start lowering and our new normal (there is that phrase again) will range between 90-95. I asked her about the oxygen/heart monitor and she said eventually we might just decide remove the monitor so it doesn't drive us crazy with alarms. She asked if I was still working and I nodded my head yes to her. She just shook her head and smiled at me. 

Jude's vitals actually look pretty good. His oxygen is running about 95-98. His heart rate is high running between 140-160 but I am assuming that's because his body is working harder. His color is good today and I got a small smile after much coaxing this morning. Charlotte said she was getting him up today to shower and then putting him in the wheelchair. I will be interested to know if he stays awake and happy or if he drifts back off to sleep again. Charlotte mentioned this morning how a year and a half ago Jude's breath sounds would have landed him in the hospital. However today we are just happy to hear air movement in his lungs. 

I dreamt of my children last night pretty vividly. I was chasing Emily and trying to keep her safe. Poor Emily she probably feels like I smother her because I worry so much about her driving and being a young adult. Letting go of one child into the world while trying to let go of one leaving our world is taking a toll. For the first time my dreams of Jude were peaceful. He was laying in his bed and I was talking to him softly telling him that everything will be okay. I dreamt I was stroking his hair and he looked so calm and sweet. I think these dreams were sparked because the hospice nurse was reading over the notes and one of the nurses had written "being held by mom is very effective". She was referencing trying to calm Jude's condition and making him feel better. 

This morning I saw an ad on Facebook from WFAA news. They were asking moms to post their mom moments and tag them at #wfaamoms. I wondered what I would post if I was going to participate. Would I post a great picture of Emily and I on some pageant excursion or one of Jude when he was little and healthy? What if I posted what some moms that are now in a different demographic actually go through? No one wants to see a sick child on a holiday but maybe it would be a reminder to moms to love and appreciate their children a little more that day. It's been a week of reminders with Jude. I walked through the boys aisle at a store and had a flash of emotion involving anger and sadness as I looked around at all the items Jude cannot use.  The mothers day gifts flooding the aisles also made me a bit sad.  These commercialized holidays have a way of stirring emotions. However I am also grateful. I am grateful for this time I have with Jude and that I have an amazingly beautiful and healthy daughter who shares this life with me. So for the moms out there who can no longer hold their babies I am truly thinking of you this week. 

Not the best day

Today wasn't an easy day. We have these days more often lately. It's hard for Mike and I to get out of bed each morning and leave Jude to go to work for the week. I don't mean to sound entitled but there should be something set in the universe that if your child is terminally ill then you become independently wealthy. Okay well how about just enough to pay the bills and eat? Then there are less stressors in your life.

Jude didn't look well again this morning when Mike and I left and we were both focused on his condition when we got to work. Mike ended up leaving work early but I was so busy I toughed the day out. I had a conversation via instant messenger with my cousin this morning and I believe if I share that with you then you can understand the summation of my feelings. 

Sarah: How are you? I had a break and wanted to check in
Me: Frustrated. How is it there? I picked up several things for Hanna I will drop off.
Sarah: Why frustrated?
Me: Hard to explain. Jude was so sick this weekend and I wasn't sure he was going to make it. Then he recovered but now he seems sick again. It's like I don't want him to pass but it's such a roller coaster. I love him dearly and I panic even thinking about losing him. I just wish there was a book that outlined what was going to happen and when. I am so spent.
Sarah: That's totally understandable. It sounds like it's really hard on you to watch and really hard on him. You want his suffering to be over but you don't want to lose him.

EXACTLY.

I wasn't going to share this video but THIS is what we see. This was our Friday night and this is SO hard.

Then he will recover and look as adorable as ever smiling beneath his oxygen mask. This kid can have minimal lung sounds and still smile. 

Then I saw this while I was scrolling through Facebook and I thought HOLY CRAP that's spot on today! It may be negative and over the top but it's fitting. 

So then I began to look for things that would put me in a better mood. This is about Jude not me and I am not going home to a fighting little boy in a pissy mood. Talk about not fair. 

Leibe makes me happy. Talk about unconditional love. Now if I could only train her to run to the store and fetch me a bottle of wine she would be perfect.  

Maui makes me happy which is where I took this awesome photo. I was proud of this shot. 

Emily's win makes me happy and that she will compete in November as Dallas teen! They told all the girls not to cry if you won due to pictures but she couldn't help herself. 

A healthy Jude. A healthy little Jude made me happy............

Cough cough Jude

Last night my husband encouraged me to go to a party my dear friend was hosting for the much anticipated pay per view fight. I am not a huge boxing fan but when I heard my husband say that Jude's situation is enveloping me I decided I should venture out. I went into the bathroom and ran my hand down my very pale and fluffy face but then I packed up the deviled eggs I made and we went to the event. I had fun seeing everyone and it was nice talking to others but my mind was constantly on Jude. I am sure I seemed tired and distracted.

Remember the amazing nurse I mentioned yesterday that scooped Jude out of my arms during the horrible night he had? Well she called in yesterday evening.  I think "the horrible night"  was all just to much for her and I would never judge her for that. I hope she comes back next week but through my blog we have all learned that may not happen. The night was extremely emotional and she knows how sick Jude is, she even told me she was surprised Jude is still fighting. So Carol filled in last night and about midnight she texted me Jude was not having a good evening and she had exhausted all measures I explained we were less than five minutes from home and we would be there soon to help her. After evaluating the medications she gave Jude I decided to hold off on giving him anything else and I picked Jude up like I did the night before and carried him to the couch. I sat and stroked his hair kissing his cheek and told him all would be okay. Slowly he drifted off to sleep and Carol took a deep breath. She said "You are his hero"...........and I said "Oh no...........you don't understand........he is my hero". She just smiled and said "Then it's a perfect fit."  I then laid Jude down in his bed and told Carol I was going to get ready for bed. Then as late as it was I poured myself a large glass of wine and soaked in a hot bath for probably an hour!

Jude looks much better today!! However his situation changes hourly. There are some things that I am noting. Jude is having frequent coughing attacks that he is having a hard time recovering from. His nurses can no longer hear any breath sounds(at all) in his lower lung lobes. When Jude coughs he doesn't get many secretions out which in itself can be a negative situation because his cough is no longer productive. Again there is no time table on Jude and seeing how I got some great smiles today I think he is still fighting his good fight.

Tomorrow I go back to work and on lunch I have decided to start working out again. Maybe it will help my overall demeanor and help my physical well being. Combined with walking the dog each night I might just shed a few pounds and spark a cute trend.

A rough night and all my minutes

Tonight was rough and it's one of those nights that I'm finding it hard to write in my blog so I am forcing myself. Not only is it therapeutic but I know it helps others. I was really looking forward to seeing Jude when I got home from work. As usual the day ended with a plethora of chores including making dinner, a milk run to the store, and walking the dog. Every time I passed Jude I promised him I would hold him tonight while we watched a movie together. He would shoot me a little grin and mouth "hi" but I noticed he still looked pale and tired. Suddenly Jude had one of his coughing fits to the point we were using the suction to pull out bloody mucus and his heart rate plummeted again. We assessed the blood and mike and I both noted it was bright red with a few clots so it shouldn't be internal bleeding. However Jude took a huge nose dive after that incident. He spiked a high fever, his extremities turned cold, and he was gasping for air. After rescue measures I took Jude out of his bed and held him on the couch until he fell asleep. Suddenly Jude began to get stressed again and woke up. The night nurse came through the front door and walked straight into a madhouse. She stepped in and whisked Jude out of my arms trying to rescue the situation. I wasn't sure if I should be grateful or upset but I opted for grateful. When the situation didn't get better I called hospice.

When hospice got there Jude had zero breath sounds in his lungs, had a temp of 103.1, and was gasping. After abuterol, Motrin, morphine, and more Jude calmed down and began breathing easier. I just sat and cried and felt so bad. I tried a glass of wine for my nerves but I was still a quiet crying mess. Both nurses hugged me and I looked at the nicest hospice nurse ever and said "I just want to unplug him from everything. I want to take him to the couch and just hold him and let him sleep but I don't want him to be in pain". She assured me that's an okay feeling and pointed out what was helping him. She said the oxygen helps him breathe and not stress, and the medicines relieve pain, but the monitor is just providing me information. So after Jude had all his treatments and he began to recover the hospice nurse said " I think your mommy wants you". So I scooped Jude up and took him to the couch and quietly Jude smiled at me and then fell asleep. Our sweet weekend nurse then told me she knew Jude has been very sick and she didn't want to alarm me but almost thought they would call her during the week to tell her well Jude had stopped fighting. Then she took Jude from me again and laid him down in his bed as she played "Hosanna" from her phone. She told me to go rest and if Jude wanted her to she would sit in my spot and hold him. Hospice instructed that they not refrain from Motrin, Tylenol, morphine and his other pain relievers. Jude was so uncomfortable and I hated that tonight. Hospice wants him to stay pain free. 

Mike didn't stay in the living room for all of this. At first I felt like the line from
Steel Magnolias that "men are suppose to be made of steel" but I finally got it. Mike knows Jude and he knows he isn't ready to leave us yet as sick and his little body is. I wondered and panicked tonight how I would KNOW because I want all my Jude time ..... I want ALL my damn minutes!!! Mike knows... Mike  gets it. It will just be.....just let it be. 

A scary moment

Jude is up and down. He literally leaves us guessing most of the time. I thought he looked better yesterday when I left for work but when I got home he gave us a huge scare. During the time we didn't have a nurse Jude began coughing pretty frequently. At one point he got so choked up that we were trying to clear him and his heart rate started rapidly falling. He fell all the way from 140 down to the 60's.....but we finally got him cleared and it started rising again. Then his oxygen began falling.......it was an interesting night for sure. His breathing was very labored throughout the night and his alarms went off fairly frequently. I got up to check on him several times and did not want to get out of bed this morning for work. When I finally drug my carcass out of bed I checked on Jude and he looked better. He would turn his head to where ever my voice was and I knew he wanted to be held but I had to leave for work. Due to his crisis issues I didn't hold him on the couch like I normally do the night before I simply held him in his bed. I am sure he was missing our cuddle time. Jude has never had his heart rate dip like that before that I can remember and it scared me! I will see how he does with Charlotte today before I begin forming any new conclusions or assumptions. 

Tonight there is a special wine and chocolate event in my small town. I was suppose to go meet a few of my girlfriends. I was really looking forward to it since I rarely get out and I am hoping I can go. However if Jude conditions worsens I will be home. So it just depends on how the day goes. 

Jude's condition

Jude slept all day yesterday until he finally woke at 9:45 last night. Once he woke up he gave me a little grin. I heard his alarms go off throughout the night but I could tell he always recovered well. This morning he looks better! I am guessing that combining the steroid with the antibiotic made him feel better. 

I say the following line over and over because I struggle with it. I think I struggle with the guilt from it. I love Jude and I always want him with me but I wonder if any other parents with a chronic child sometimes feel guilty for getting their child better only to have them suffer again. Of course I want him well and without pain, but does anyone understand what I am saying? It's like we get them better knowing they will go through all the pain and agony again and again. It's like a merry go round that never stops for them. Jude's lungs do not have the capacity to ever return to normal so it's all about keep him comfortable and well now. However getting him well means he will suffer again. I don't like him suffering but I don't want to lose him! I don't like watching him gasp and retract for air. I don't like his fevers and him moaning in pain. I hate he has to have all these tubes and wires running into his bed and constantly attached to him. He has to get tired of them yet he manages a little smile even in the moments he is so very sick. 

 I guess I will just look at this positive and be so happy that he looks like he is beating yet another illness and this time he did it without ICU! I will have him in my life a little longer and get to kiss his sweet smelling curly hair! Strong boy!  

Jude's update (includes picture that may be disturbing)

I didn't post an update at 4pm yesterday because I was really at a loss for words. I wasn't sure what Jude's status was and I wanted to watch him overnight. To sum it up Jude had a very rough night. I could tell Friday that he was just starting to feel very poorly. I again felt like I was saying over and over "he looks pale".  Then last night he just looked terrible and was having significant breathing issues. This picture is disturbing so I understand if you need to look away. 

I knew the only person that could get Jude feeling better is Charlotte. So before I called hospice out I wanted to see what she could do. To be honest........I kind of felt like this was Jude taking a turn for the worse. I slept for awhile this morning to try to help my pneumonia and I also wanted to give Charlotte time to work with him before I left. When I got up she was giving him a breathing treatment and he was in the shaker vest. She mentioned his lungs didn't sound well and I asked her to call me if he gets worse. She said if he got worse there was no other option but to call me and hospice crisis care. 

So I went to work with Jude on my mind and waited to hear something. About 11am I texted Charlotte and the charge nurse with hospice who had stopped by to see him. I was told Charlotte got him breathing better and he was resting comfortably! She is amazing. They are going to start Jude on a steroid in addition to the antibiotic he is on. I have mentioned that sometimes I feel like we just get him better with modern medications only to put him back through this misery again. However the nurse pointed out that they are comfort measure too and when his body is done it will give up without medications or intervention. I want him comfortable but of course I really would love him completely healthy. Realistically I know that is no longer an option. 

So the question remains on if Jude will get better with Charlotte working with him and the medications or if his little lungs are just tired. We will see how the day goes. 

Mom down! Mom down!

For your second and you freaking kidding me moment I have pneumonia. Not even kidding. Guess they weren't joking when they said this particular strain of highly infectious. I left work today and went by the doctor where I got an x Ray and a prescription for drugs that will fix me quickly. I decided to spare my co workers and head home for the day.  Note to friends and family if you start coughing and feeling poorly just go in! Don't try to remedy it on your own like me. No worries I'll be back to myself soon!

Jude on the other hand doesn't look well at all. His antibiotics have been going about 48 hours now and he looks worse to me. He is sleeping more and his color seemed to rapidly deteriorate last night. I have debated on calling hospice in to see him but we all know Jude can quickly recover. So I think I'm going to wait until his 4pm antibiotic and reevaluate the situation. I will post an update.

Kid down! Kid down!

Ever have one of those moments where you think "you have got to be shitting me" (forgive my language). I was all about that sentence last night as I realized my daughters sickness was just not getting any better. 6-8 weeks ago she went to Care Now and received an antibiotic shot due to what they thought was a sinus infection. Emily is rarely ill so we figured she would quickly recover but she didn't. So then we saw the Doctor on Demand........twice. They originally diagnosed a continued sinus infection and ordered antibiotics and a steroid.  She got better for awhile but then she started showing symptoms again. So then they said they thought it was viral. Per the ER last night they would have diagnosed the exact same thing based on her prior symptoms........but now we have a never ending consistent cough. Emily has walking pneumonia........no I am not kidding. Basically the exact same highly contagious form that Jude had in ICU. I mean really? So she is at home prescribed an antibiotic for respiratory issues, 50 vials of abuterol, and a steroid. If you have called and I have not returned your call you now know why. 

To top it off when I rushed Emily up to the ER our nurse had still not shown for the night. So I get to the ER and my phone keeps going off with the nursing agency calling. I asked my husband to handle it and it turned out the nurses car overheated. Bear in mind that Jude was at home very ill last night. Luckily they got a replacement nurse. We all got in bed about 1:30 or so. I then kept waking up about every hour to check on Emily and peek my head out at Jude. I am tired and I would like to go home early today but that won't happen. 

The good thing is Em was in a good mood and although sick is toughing it out with a smile. 

It's okay to let go

Something has become very apparent to me this week and that's the fact I am not as strong as I used to be. I have always been extremely resilient and I tend to take the lead in stressful situations. However we had a nursing situation come up today and my husband recognized that my stress level has officially overflowed. My guess is that he may have recognized it months ago. Regardless when I mentioned the situation to him he took over without hesitation and even told the agency that they should no longer call me. Then tonight Emily was watching a funny you tube about a mom who could not handle her child being stubborn after his wisdom tooth surgery. She jokingly said "that would be you". I suddenly felt very overwhelmed with a sense of failure because it's obvious I have shown weakness when I needed to be strong. I began obsessing over the fact my child thought I was not good enough but then..... I decided to stop obsessing. 

I halted everything and realized that my life has not been easy and it's okay that for once I just hand everything over to someone else. I realized that I don't always have to live up to what I think people expect me to be. The truth is my true family will love me no matter who I am.  It's okay to allow my husband to be in charge and I promise to not judge the fact he forgot some of Jude's medications tonight, lol. As I held Jude in my arms tonight I felt little pressure to do anything else. The dishes, the laundry, and the messes will be there tomorrow ... but we may not. So it's okay to shut down and let someone else take the load. It's understandable and it will all be okay.... eventually. 

I guess this coincides with the blog I posted about changing who you are due to a tragic situation. Sometimes that change isn't easy but if you pay attention you will realize the change is needed.  If people don't understand you just have to believe that they will at some point.

Jude is pale and sleepy but he is full of smiles so I will consider this a good day! 


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Emily's big win and Jude's fever

I am exhausted but happy. It was an amazing weekend with friends and watching Emily compete. I was able to sip some wine and enjoy great conversation with really good people. Emily and her friends did very well at the pageant. They seemed to truly enjoy their time together and I think it helped relax them all. Emily looked the best she ever has this weekend and radiated with confidence when she was on stage. Emily has struggled a bit in the past with interview so this weekend she said she was just going to have fun and be herself. I am so glad she finally registered that she should just be herself and let her personality shine. When she came out of interview she was just beaming with joy because it went so well.

I have to say that I am very proud of Emily but not just for doing a great job. I am proud of her for not giving up because I would have. She was determined to use each competition she didn't place in and each disappointment to better herself and try again. Due to her determination and hard work she succeeded and reached her goal of being Dallas Teen USA. Now Emily will be sponsored to go to Texas teen in November and obtain her goal of getting in the top 15 and maybe even Texas Teen USA. I say we all road trip!

I think one of the cutest sights this weekend was when we looked up and Emily's cousin Faith that competed with her was bawling because Emily won. She was so happy for her the tears just flowed.

Unfortunately when Emily and I got home Jude didn't look that well to me. He was pale and restless so I took his temp and it was 99.3. I gave him some Motrin and let the night nurse know. I heard Jude's alarms go off throughout the night. I got up about 6am to check on Jude and he was burning up to the touch. I took his temp and under his arm it was 101.7. So I again gave him Motrin but then his heart rate got out of control due to the fever and it spiked to over 200. I got some wet rags and more to try to bring it down and gave him some Morphine. Eventually it went into the 160's so I felt comfortable enough to lay back down for awhile. When I was leaving for work he still had a low grade temp and he looked very pale but he was smiling at me. If he is responsive during a temp that's good. So I know Charlotte will work with him today and I am sure Hospice will go by to check on him and see what they think the course of action should be if any. Hopefully he is feeling better soon.

A hard watch.

I always tell Emily that everyone has a story it's just that some stories are harder than others so be sure to make yours count! 

This is hard to watch but a reminder that when you feel you cannot go on anymore you really can. What courage he has. I question sometimes why children have to suffer and I honestly don't know the answer. However I do know that recognizing courage and bravery in others brings out the positive in yourself. I know Jude cannot speak like Jonathan but I hope people find  inspiration in Jude as I have found in this little boy.